Due to the fact that I have multiple AI conditions, and the idea I have behind my blog is to help all those with AI concerns, I have created a new blog that I will strive to keep updated with not only PBC, but all AI information I get. I also plan to add a recipes section, as many often ask for various ideas.
Please take a look at the new Wellness in Autoimmunity: Trying to Create Health by Improving Nutrition Goals - WATCHING blog. Start watching what you put in your body, so that you may gain better health. I hope it's helpful!!
Wednesday, March 4, 2015
Saturday, February 7, 2015
New year, Renewed Commitment
I haven't updated in awhile. I only see the liver doctor once a year now, but that might be changing. I'll find out Tuesday. I only get my blood work done every 3 months, though I only did it twice last year. It was a super busy year, and I just didn't do as well as I'd hoped.
I've still remained 100% grain free of course, but some of my other good habits of working out and morning green drinks got inconsistent. I've also been eating more sugar and legumes that I did before. All these things combined, and my numbers are up, my symptoms are worse, and I have new symptoms now of joint pain, extremely dry mouth and eyes. Not good. So back to research I went. I knew I had to step up my game in order to fight this.
So, I've decided to go to the complete AutoImmune Protocol (AIP). It's pretty strict, but I'm not ok with dying sooner than I have to, I have a family that I'd like to see grow up/old. I am engaged to be married soon and he and I have decided to do this together. He already ate a fairly strict diet, much like I do, so the change isn't exceptionally hard on him (except not having spicy food), but I will say he is an exceptional man for doing it. In fact, our whole house is AIP complaint for all meals. We have 3 girls aged 6,8 and 9 and they will not be getting separate meals.
Grains are out completely, but we do allow them some nuts, seeds, chocolate and dairy in limited quantities for their school lunches and for treats.
Today completes the first week of the AIP for us.
The first couple of days without any coffee, sugar or chocolate were actually much worse than I would have thought they would have been. Usually the worst addiction is wheat. Many people don’t know this, but wheat can cross the blood brain barrier like opiates (heroine, morphine, oxycodone). This is part of why it is so addictive. And it can cause actual, physically painful withdrawal symptoms when taken out of your diet. But I did that 3 years ago, and it honestly wasn’t that bad for me. I also have a pancreas problem, Not AI, that caused me to have to eat very low carb for a long time. So I haven’t eaten many wheat products for 16 years now (minus a short stent of thinking fresh, homemade whole wheat bread made the difference from the highly processed kind a few years ago, which it does not).
Those first few days I felt so tired, had headaches and generally felt like I’d been hit by a truck. I hadn’t expected much of anything because I didn’t think this was such a HUGE change from our normal eating, so this was a bit tough for me to accept. After about the 3rd day I started feeling better. I actually made it to the gym this week too, which is pretty amazing. Today I’m feeling pretty good as far as the diet change goes. My hip and knees still hurt, but it is slightly less than it was.
I don’t expect miracles in just 1 week.
Generally the diet is fine. Not having any chocolate or coffee is really the worst of it for me, but choosing life over coffee is an easy choice. Our daughters haven’t really even noticed much of a change, I think, except that we've all talked about it. We never had bread or any grains at a meal anyway. Just now there’s also no dairy or legumes as well. Those are 2 things we probably used fairly commonly. Today was the first weekend morning breakfast to make. We can’t have eggs, so instead we made homemade turkey sausage and sweet potato hash. Turned out pretty good, but I think the girls would have preferred my grain free waffles or an omelet…Maybe in a few months.
Besides hopefully fixing, or at least preventing further damage of my liver, this diet has had some really cool side effects too. My fiancé and I actually get to cook together now, not him cook and I bake. We’re doing it together. And it makes us feel closer. This ‘thing’ we’re doing together, for us. I REALLY like that.
So it’s been a week. I’m feeling better from the initial drag, but we probably have many more weeks to go before other things improve, but I’m in it to win it - WE’RE in it to win it! :)
For all the people I know with AI, and for those I haven’t met yet- I plan to continue to update the progress of things. There needs to be a better solution to AI diseases. Taking a pill to (marginally) manage symptoms, and even cause worse side effects is just no way to live. We exist, having moments of less pain where we can enjoy life, but that’s not enough. I actually want to FEEL better, to GET better. With the AIP and other lifestyle changes, I hope to accomplish that.
=========
For those that don’t know what the AIP is, the short list.
Don’t eat:
* Grains
* Pseudo grains
* Legumes
* Nuts
* Seeds
* Sugars (including honey, maple syrup and artificial sweeteners)
* Dairy
* Night shades (here's a good list http://www.thepaleomom.com/2013/08/what-are-nightshades.html)
* Eggs
Do enjoy:
* Meat
* Seafood
* Sea vegetables
* Green leafy vegetables
* Cruciferous vegetables
* Fruit
* Gourds (squash, pumpkin, etc)
* Sweet potatoes
* Alliums (onions, garlic, shallots, etc)
* Spices as long as it doesn’t fall into a category above
* Coconut
We also have a green, blended drink ever morning with:
* Frozen fruit
* spinach
* kale
* carrots
* cucumber
* lime
* aloe cut from a plant
* aloe juice
* coconut water
* parsley
* avocado
* ACV
* Milk Thistle Extract
With the right fruit, the smoothie is delicious.
And for those interested, besides my liver meds, these are the supplements I take (some are for AI in general, some are due to my liver disease specifically):
Fat soluble vitamins / and because my liver doesn’t process them: A, C, D, E, K and Calcium/Magnesium
Gut healing: Probiotics, Digestive enzymes, L-Glutamine, NAC, Betaine HCL +Pepsin, slippery elm
For SIBO / Yeast overgrowth in the gut: Anti-microbial, Caprylic Acid
L-lysine
Krill Oil
Biotin (my liver meds make my hair fall out)
Some Good Resources:
http://www.AmyMyersMD.com
http://www.GlutenFreeSociety.org
http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol
Wheat Belly Book by William Davis, MD
I've still remained 100% grain free of course, but some of my other good habits of working out and morning green drinks got inconsistent. I've also been eating more sugar and legumes that I did before. All these things combined, and my numbers are up, my symptoms are worse, and I have new symptoms now of joint pain, extremely dry mouth and eyes. Not good. So back to research I went. I knew I had to step up my game in order to fight this.
So, I've decided to go to the complete AutoImmune Protocol (AIP). It's pretty strict, but I'm not ok with dying sooner than I have to, I have a family that I'd like to see grow up/old. I am engaged to be married soon and he and I have decided to do this together. He already ate a fairly strict diet, much like I do, so the change isn't exceptionally hard on him (except not having spicy food), but I will say he is an exceptional man for doing it. In fact, our whole house is AIP complaint for all meals. We have 3 girls aged 6,8 and 9 and they will not be getting separate meals.
Grains are out completely, but we do allow them some nuts, seeds, chocolate and dairy in limited quantities for their school lunches and for treats.
Today completes the first week of the AIP for us.
The first couple of days without any coffee, sugar or chocolate were actually much worse than I would have thought they would have been. Usually the worst addiction is wheat. Many people don’t know this, but wheat can cross the blood brain barrier like opiates (heroine, morphine, oxycodone). This is part of why it is so addictive. And it can cause actual, physically painful withdrawal symptoms when taken out of your diet. But I did that 3 years ago, and it honestly wasn’t that bad for me. I also have a pancreas problem, Not AI, that caused me to have to eat very low carb for a long time. So I haven’t eaten many wheat products for 16 years now (minus a short stent of thinking fresh, homemade whole wheat bread made the difference from the highly processed kind a few years ago, which it does not).
Those first few days I felt so tired, had headaches and generally felt like I’d been hit by a truck. I hadn’t expected much of anything because I didn’t think this was such a HUGE change from our normal eating, so this was a bit tough for me to accept. After about the 3rd day I started feeling better. I actually made it to the gym this week too, which is pretty amazing. Today I’m feeling pretty good as far as the diet change goes. My hip and knees still hurt, but it is slightly less than it was.
I don’t expect miracles in just 1 week.
Generally the diet is fine. Not having any chocolate or coffee is really the worst of it for me, but choosing life over coffee is an easy choice. Our daughters haven’t really even noticed much of a change, I think, except that we've all talked about it. We never had bread or any grains at a meal anyway. Just now there’s also no dairy or legumes as well. Those are 2 things we probably used fairly commonly. Today was the first weekend morning breakfast to make. We can’t have eggs, so instead we made homemade turkey sausage and sweet potato hash. Turned out pretty good, but I think the girls would have preferred my grain free waffles or an omelet…Maybe in a few months.
Besides hopefully fixing, or at least preventing further damage of my liver, this diet has had some really cool side effects too. My fiancé and I actually get to cook together now, not him cook and I bake. We’re doing it together. And it makes us feel closer. This ‘thing’ we’re doing together, for us. I REALLY like that.
So it’s been a week. I’m feeling better from the initial drag, but we probably have many more weeks to go before other things improve, but I’m in it to win it - WE’RE in it to win it! :)
For all the people I know with AI, and for those I haven’t met yet- I plan to continue to update the progress of things. There needs to be a better solution to AI diseases. Taking a pill to (marginally) manage symptoms, and even cause worse side effects is just no way to live. We exist, having moments of less pain where we can enjoy life, but that’s not enough. I actually want to FEEL better, to GET better. With the AIP and other lifestyle changes, I hope to accomplish that.
=========
For those that don’t know what the AIP is, the short list.
Don’t eat:
* Grains
* Pseudo grains
* Legumes
* Nuts
* Seeds
* Sugars (including honey, maple syrup and artificial sweeteners)
* Dairy
* Night shades (here's a good list http://www.thepaleomom.com/2013/08/what-are-nightshades.html)
* Eggs
Do enjoy:
* Meat
* Seafood
* Sea vegetables
* Green leafy vegetables
* Cruciferous vegetables
* Fruit
* Gourds (squash, pumpkin, etc)
* Sweet potatoes
* Alliums (onions, garlic, shallots, etc)
* Spices as long as it doesn’t fall into a category above
* Coconut
We also have a green, blended drink ever morning with:
* Frozen fruit
* spinach
* kale
* carrots
* cucumber
* lime
* aloe cut from a plant
* aloe juice
* coconut water
* parsley
* avocado
* ACV
* Milk Thistle Extract
With the right fruit, the smoothie is delicious.
And for those interested, besides my liver meds, these are the supplements I take (some are for AI in general, some are due to my liver disease specifically):
Fat soluble vitamins / and because my liver doesn’t process them: A, C, D, E, K and Calcium/Magnesium
Gut healing: Probiotics, Digestive enzymes, L-Glutamine, NAC, Betaine HCL +Pepsin, slippery elm
For SIBO / Yeast overgrowth in the gut: Anti-microbial, Caprylic Acid
L-lysine
Krill Oil
Biotin (my liver meds make my hair fall out)
Some Good Resources:
http://www.AmyMyersMD.com
http://www.GlutenFreeSociety.org
http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol
Wheat Belly Book by William Davis, MD
Friday, October 18, 2013
Latest update as of October 18, 2013
Well, I had my appointment with my Gastroenterologist today. I've been working really hard on improving the health of my liver and my overall health, but I found out my numbers were a little bit of a mixed bag this time. My ALT and AST numbers were a little different, but little enough that it might just be natural fluctuation. But my ALP was up by about 30. This isn't so good. I think a reason for this is how much I've been tapering the Urso. I really, really hate being on meds- meds that have no end in sight. And they also make my hair fall out by the HANDFUL every washing. So I've been tapering at a pretty good rate to try to balance liver health and the rest. I may have pushed that a bit far recently, so I'll need to bring that back to a level that pushes my liver in the right direction. It's been nice actually seeing hair growing back! But I take liver over hair...So I need to work on the balance.
All this has me thinking, I trial and error a lot here as a way of trying to get myself into optimum health. I do this because I feel like I'm forced to take control of it myself. Most mainstream doctors are all about meds and treating illness, NOT about creating health. There's a big difference in those mentalities and I haven't felt like I could really find a provider that would embrace health- unless it was a 'hippy' that other people wouldn't respect their suggestions. I would, since I don't think it it takes a piece of paper with MD on it to really understand the human body and how to help- It takes experience and a DESIRE to understand. But when you try to plead your case to others, if the person giving the advice doesn't have those two little letters, some people tend to dismiss them. I do have a few resources that I trust, but honestly I want someone local that I can trust and that I can AFFORD! So I'm researching. Looking for my guide in this journey :) I know I will find them, in this of all towns I'm sure...
So before I put up the numbers, I wanted to note the additional numbers I have. First I added albumin as I have found it is a very good indicator of liver health. I am in range with this one, but I'd like to work on lowering it since I'm really BARELY in range. Also, I added protein, it's good, but just keeping it here for tracking. Also, I added Bili Direct just as another indicator for bili. And the PT is the Prothrombin Time- this is the time it takes to clot. As the liver gets sicker, the time to clot takes longer and longer. So far I've only been getting this checked occasionally, but I've included it to show that my PT is good.
Actually, everything except the ALP is in range. This is definitely good. But I am going to focus on trying to get everything better. I'm hoping my Guide will have some good ideas for me.
I hope everyone has a great weekend! I'll update again soon!
All this has me thinking, I trial and error a lot here as a way of trying to get myself into optimum health. I do this because I feel like I'm forced to take control of it myself. Most mainstream doctors are all about meds and treating illness, NOT about creating health. There's a big difference in those mentalities and I haven't felt like I could really find a provider that would embrace health- unless it was a 'hippy' that other people wouldn't respect their suggestions. I would, since I don't think it it takes a piece of paper with MD on it to really understand the human body and how to help- It takes experience and a DESIRE to understand. But when you try to plead your case to others, if the person giving the advice doesn't have those two little letters, some people tend to dismiss them. I do have a few resources that I trust, but honestly I want someone local that I can trust and that I can AFFORD! So I'm researching. Looking for my guide in this journey :) I know I will find them, in this of all towns I'm sure...
So before I put up the numbers, I wanted to note the additional numbers I have. First I added albumin as I have found it is a very good indicator of liver health. I am in range with this one, but I'd like to work on lowering it since I'm really BARELY in range. Also, I added protein, it's good, but just keeping it here for tracking. Also, I added Bili Direct just as another indicator for bili. And the PT is the Prothrombin Time- this is the time it takes to clot. As the liver gets sicker, the time to clot takes longer and longer. So far I've only been getting this checked occasionally, but I've included it to show that my PT is good.
Actually, everything except the ALP is in range. This is definitely good. But I am going to focus on trying to get everything better. I'm hoping my Guide will have some good ideas for me.
| Date | AST | ALT | ALP | Bili total | Bili direct | Albumin | Protein | PT | |
| Normal | 5–35 | 7–56 | 30–132 | 0.1–1.3 | 0–0.3 | 2.9–5 | 6–8.4 | 9.6–12.8 | |
| 2/20/2012 | 235 | 389 | 937 | 1.7 | - | 4.6 | 8.2 | ||
| 3/6/2012 | 142 | 253 | 633 | 1.1 | 0.3 | 4.4 | 7.4 | 10.9 | |
| 4/16/2012 | 59 | 101 | 194 | 1 | 0.3 | 4.4 | 7.3 | ||
| 5/14/2012 | 36 | 56 | 160 | 1 | - | 4.3 | 7.2 | ||
| 7/6/2012 | 31 | 42 | 163 | 1.2 | 0.3 | 4.3 | 6.9 | ||
| 10/2/2012 | 58 | 113 | 221 | 1.4 | 0.3 | 4.5 | 7.4 | ||
| 1/31/2013 | 47 | 72 | 201 | 0.9 | 0.2 | 4.5 | 7.4 | ||
| 4/30/2013 | 36 | 44 | 188 | 1.2 | 0.3 | 4.2 | 7 | ||
| 7/30/2013 | 36 | 36 | 185 | 1.1 | 0.3 | 4.3 | 7 | ||
| 10/16/2013 | 32 | 39 | 214 | 0.8 | 0.2 | 4.4 | 7.2 | 10.8 |
I hope everyone has a great weekend! I'll update again soon!
Wednesday, September 18, 2013
My routine as of 09/18/2013
I said I would post this last week, sorry for it being late! I've had people ask what I'm doing to help with my liver and overall health and I decided to write a post about it.
What I do is always evolving. With new information everyday, I always see room for improvement. And the fact is, I'm trying to fix something that's broken, so it's kind of trial and error for me. Prevention is the key!!! This is why I try so hard with my daughter to prevent her from getting to this damaged point. She's very susceptible to my diseases and to Celiac (see previous posts), so I'm really trying to teach her young what's safe for our bodies....
For now, I can say what I've been doing, but I worked up to these things. I began with research. I had a skin autoimmune disease (lichen sclerosis). The ONLY thing my doctor told me to do was use this steroid ointment that in fact caused as many problems as it supposedly helped. So I was searching for another way to actually HELP. Then I was suddenly diagnosed with Stage 2 Primary Biliary Cirrhosis (PBC)- another auto immune disease, this time of the liver. And I was also having other skin issues- turns out to be Eczema (suspected to also be AI). All these combined along with major fatigue, I was feeling lost and out of control. Not controlling your own body down right stinks and I felt like it was falling apart around me.
But I took my health into my own hands. Many of the 'mainstream' doctors just prescribe a pill that doesn't actually fix anything. Just lessens symptoms, but may cause other problems - but there's a pill for that as well...And so it goes. But read my earlier posts on this blog and you will find link after link to studies that show it doesn't have to be this way. There are doctors out there of both western and eastern medicine that agree that pills are not the answer. Even highly esteemed graduates of top ivy league universities with an MD know that pills are not the answer. It's not just a 'hippy' thing anymore. It's becoming more and more mainstream, I would guess it won't be long before this way of life is not just for those 'radical' people.
Sadly, even once the information reaches the masses, there are, and will, still be people that poo-poo it. "It's not scientific because it's not a pill, a man-made chemical. There's no way that NATURE can possibly fix this, or prevent it. There's no way that eating 'heart healthy' grains is bad for you! It's just not possible that my family doctor doesn't know what's best for me. It's ridiculous to think that INCURABLE diseases are cured with a healthy lifestyle! It just doesn't make any sense, and that way of life is too restrictive for me. I want to be able to eat pizza, Eggo Waffles and Chips Ahoy cookies! Just make a pill that fixes it so I can have my cake and eat it too."
It doesn't work like that. That old saying 'You are what you eat' is so true. If you put junk, chemicals and poison into your body- you will pay the price eventually. Maybe you won't get liver disease or celiac. Maybe instead it will slowly hit you over time and you will have dementia in your old age. Or maybe it will hit you as lupus, or rheumatoid arthritis, or diabetes or any of the other nearly 200 AI diseases out there. There are studies that have shown major improvement and even CURING of these diseases. I've talked to a girl here in my city that CURED herself of lupus after years of suffering by making lifestyle changes similar to what I do. It can be done, but it does take commitment. This is the sticking point for many. People have flat out told me they'd rather eat how they want and just pay the price later. And if that's how you feel, then so be it, but make that choice with complete and full information and DO NOT force your choices on another person. People partially don't change their lifestyle due to way it would 'appear' or the way people might talk about them and their extremist way. Those people make me sick. Choosing to eat healthfully is a good thing, no matter what. Influencing your children to eat healthfully is a good thing, no matter what.
So what am I doing exactly? And is it helping?
First, I think it is helping A LOT. I am not so tired anymore and I am busier and more active than I've ever been. I'm happier than I've been in so many years. My outlook is positive and I believe I will be the healthiest I've ever been in the next couple of years- despite liver disease. (And yes, even depression, anger issues and all sorts of mood issues have a strong link to your diet). My liver tests are much better than they were and even my skin conditions RARELY have flare ups now. Life is definitely better. I virtually KNOW that I will not leave my daughter at a young age. I am not worried that I cannot actively participate in life. I know that I am a healthy and active mother and partner and I will continue this way for as long as I make it happen. The key is to keep working hard on this.
"We cannot solve our problems with the same thinking we used when we created them"
----Albert Einstein
My Routine:
Every morning I make a green drink. It comes out to about 24oz or so. I blend some combination of the following (all organic):
Big handful of baby spinach or baby kale
carrot
cucumber
avocado
aloe vera (juice or freshly cut inner leaf)
whole lime (skin and all!)
banana
frozen berries or peaches (something frozen)
Alcohol Free Milk Thistle extract (very important for the liver)
fresh cilantro or parsley
I also eat an apple nearly everyday- very good for the liver.
I eat A LOT of salad (much of the same veggies in the drink)- sometimes even 2 in a day in addition to the drink. Squeeze an orange for 'dressing' and get some extra vitamin C. Fresh fruit and vegetables have to be the primary focus of the meals. What I've read is that many times AI diseases trigger or are aggravated by vitamin or mineral deficiency- so this is where all the whole, raw foods come into play.
Favorite salad right now:
Baby spinach
avocado
tomato
uncured prosciutto
orange slices and some squeezed for 'dressing'
sometimes add one or two:
kiwi
dried cranberries
alfalfa sprouts
carrot shreds
nuts
Also, for veggies I cook, they are still very crisp. Fresh asparagus just to the point of turning bright green is still very crunchy and the taste has developed. Same for fresh broccoli or green beans. Over cooked veggies lose so much nutrition. Also, I don't steam or boil- all the vitamins are lost in the water. I have waterless cooking pots (really any pot with a tight fitting lid will work). Heat on low, no seasonings needed or oils or anything. Just cook till color develops. Try not to check too often, as natural moisture escapes every time the lid is opened.
I try to be sure my meat and eggs are pasture raised, wild caught, grass-fed: whatever is appropriate for that species. Corn fed, factory farmed meat is not healthy. It goes back to 'you are what you eat'- if the animals are eating poorly, so will their meat and eggs provide poor nutrition.
Of course, it's not about being perfect. Most people stick with an 80/20 rule. I am probably more like 90/10- While I'm 100% no grains, I do have sugar and other not completely healthy options sometimes...I do make occasional fun treats for my daughter (all grain free of course, but not necessarily super healthy- still healthier than the packaged junk tho!). Having no fun will lead to wanting of the 'bad' stuff....Can't have that! You can eat healthy and still have a treat that is reasonably within limits. We do go out to eat sometimes, just try to minimize the damage with good choices.
We absolutely eat no grains. We limit potatoes, but do have a sweet potato occasionally and very rarely gold/yellow potatoes. We limit refined sugar. No sodas. VERY LIMITED juices. Very limited soy. We eat some legumes, but not all that much (though we do have peanut butter fairly regularly). Limited dairy (though my daughter tends to have cheese and milk).
I have been told it's too expensive to eat like this, but it's really not. I get very few items in the inner aisles of the grocery store. Not buying all those bags and boxes of "food", really opens up the budget for more fresh, whole foods. Which is what most of my basket ends up being.
Of course food is only 1 aspect of health. We also need to build a strong body. So I do some hard workouts every week- like kickboxing, weightlifting, etc. I also do pilates or yoga regularly to help with flexibility and building the core. Running is great cardio that I incorporate on a regular basis. But also, I find places to work in a few minutes here and there. I bring extra shoes (I normally wear high heels at work) so I can get up and run the stairs a few times throughout the day. I work on the 4th floor, so this can add up. Also, our parking garage is 6 stories- that's 12 flights of stairs each way. I try to do that 3 times a week, 3 trips each time (36 up and 36 down). It only takes a few minutes each time, but it definitely seems to make a difference on my cardio performance. Stairs are like jumping rope- you get a lot of bang for your buck time wise, but it requires less coordination!
I know it seems counter-intuitive, but forcing yourself to get up and exercise INCREASES your energy. AI diseases are so good at zapping our energy, finding ways to increase it is so important. And when you feel better, it is easier to keep going. Objects in motion tend to stay in motion...
I also take a lot of vitamins. My liver doctor helped to work out the doses; PBC especially makes it hard to absorb fat soluble vitamins (A,D,E, and K), so those need to be taken in larger doses. I also take a lot of Vitamin C and B vitamins. Additionally PBC puts me at risk of osteoporosis, so I take a lot of calcium. Lastly, I take Alpha Lipoic Acid, slowly increasing over time. ALA has actually cured AI liver disease in previous studies! And I'm also taking Urso...For now. I will continue to take it until I can have a solid history of my liver being healthy. I'm only 1.5 years into this PBC journey, so it will take more time. The good thing is that I only take it about 75% of the time now and already I have some hair regrowth! And my liver numbers continue to improve.
I'm a single mom of a 4 yr old, going to grad school, working full time, have an active social life and I have 3 AI diseases; yet I feel better than I have in years. I really, really believe so many people could control or cure their chronic illnesses if they just had the right information and then put it to use. It makes me so sad when I see people suffering and taking pill after pill and not getting any better. I'm not against medicine, there are definitely times it's needed (especially for acute situations), but chronic diseases are not cured with a pill. If they were, they wouldn't be chronic. They are managed, some better than others, but no pill will cure a chronic illness.
I hope I've helped those that have asked for my info. Of course, I'm just one person and I'm not a doctor. Talk to your doctor. Get second and third opinions. Go to alternative medicine doctors. Read all the studies. Take what I say with a grain of salt, make an informed choice that's right for you. I can only just say what's working for me. If you want more details, please message or comment. I'll be happy to share!
What I do is always evolving. With new information everyday, I always see room for improvement. And the fact is, I'm trying to fix something that's broken, so it's kind of trial and error for me. Prevention is the key!!! This is why I try so hard with my daughter to prevent her from getting to this damaged point. She's very susceptible to my diseases and to Celiac (see previous posts), so I'm really trying to teach her young what's safe for our bodies....
For now, I can say what I've been doing, but I worked up to these things. I began with research. I had a skin autoimmune disease (lichen sclerosis). The ONLY thing my doctor told me to do was use this steroid ointment that in fact caused as many problems as it supposedly helped. So I was searching for another way to actually HELP. Then I was suddenly diagnosed with Stage 2 Primary Biliary Cirrhosis (PBC)- another auto immune disease, this time of the liver. And I was also having other skin issues- turns out to be Eczema (suspected to also be AI). All these combined along with major fatigue, I was feeling lost and out of control. Not controlling your own body down right stinks and I felt like it was falling apart around me.
But I took my health into my own hands. Many of the 'mainstream' doctors just prescribe a pill that doesn't actually fix anything. Just lessens symptoms, but may cause other problems - but there's a pill for that as well...And so it goes. But read my earlier posts on this blog and you will find link after link to studies that show it doesn't have to be this way. There are doctors out there of both western and eastern medicine that agree that pills are not the answer. Even highly esteemed graduates of top ivy league universities with an MD know that pills are not the answer. It's not just a 'hippy' thing anymore. It's becoming more and more mainstream, I would guess it won't be long before this way of life is not just for those 'radical' people.
Sadly, even once the information reaches the masses, there are, and will, still be people that poo-poo it. "It's not scientific because it's not a pill, a man-made chemical. There's no way that NATURE can possibly fix this, or prevent it. There's no way that eating 'heart healthy' grains is bad for you! It's just not possible that my family doctor doesn't know what's best for me. It's ridiculous to think that INCURABLE diseases are cured with a healthy lifestyle! It just doesn't make any sense, and that way of life is too restrictive for me. I want to be able to eat pizza, Eggo Waffles and Chips Ahoy cookies! Just make a pill that fixes it so I can have my cake and eat it too."
It doesn't work like that. That old saying 'You are what you eat' is so true. If you put junk, chemicals and poison into your body- you will pay the price eventually. Maybe you won't get liver disease or celiac. Maybe instead it will slowly hit you over time and you will have dementia in your old age. Or maybe it will hit you as lupus, or rheumatoid arthritis, or diabetes or any of the other nearly 200 AI diseases out there. There are studies that have shown major improvement and even CURING of these diseases. I've talked to a girl here in my city that CURED herself of lupus after years of suffering by making lifestyle changes similar to what I do. It can be done, but it does take commitment. This is the sticking point for many. People have flat out told me they'd rather eat how they want and just pay the price later. And if that's how you feel, then so be it, but make that choice with complete and full information and DO NOT force your choices on another person. People partially don't change their lifestyle due to way it would 'appear' or the way people might talk about them and their extremist way. Those people make me sick. Choosing to eat healthfully is a good thing, no matter what. Influencing your children to eat healthfully is a good thing, no matter what.
So what am I doing exactly? And is it helping?
First, I think it is helping A LOT. I am not so tired anymore and I am busier and more active than I've ever been. I'm happier than I've been in so many years. My outlook is positive and I believe I will be the healthiest I've ever been in the next couple of years- despite liver disease. (And yes, even depression, anger issues and all sorts of mood issues have a strong link to your diet). My liver tests are much better than they were and even my skin conditions RARELY have flare ups now. Life is definitely better. I virtually KNOW that I will not leave my daughter at a young age. I am not worried that I cannot actively participate in life. I know that I am a healthy and active mother and partner and I will continue this way for as long as I make it happen. The key is to keep working hard on this.
"We cannot solve our problems with the same thinking we used when we created them"
----Albert Einstein
My Routine:
Every morning I make a green drink. It comes out to about 24oz or so. I blend some combination of the following (all organic):
Big handful of baby spinach or baby kale
carrot
cucumber
avocado
aloe vera (juice or freshly cut inner leaf)
whole lime (skin and all!)
banana
frozen berries or peaches (something frozen)
Alcohol Free Milk Thistle extract (very important for the liver)
fresh cilantro or parsley
I also eat an apple nearly everyday- very good for the liver.
I eat A LOT of salad (much of the same veggies in the drink)- sometimes even 2 in a day in addition to the drink. Squeeze an orange for 'dressing' and get some extra vitamin C. Fresh fruit and vegetables have to be the primary focus of the meals. What I've read is that many times AI diseases trigger or are aggravated by vitamin or mineral deficiency- so this is where all the whole, raw foods come into play.
Favorite salad right now:
Baby spinach
avocado
tomato
uncured prosciutto
orange slices and some squeezed for 'dressing'
sometimes add one or two:
kiwi
dried cranberries
alfalfa sprouts
carrot shreds
nuts
Also, for veggies I cook, they are still very crisp. Fresh asparagus just to the point of turning bright green is still very crunchy and the taste has developed. Same for fresh broccoli or green beans. Over cooked veggies lose so much nutrition. Also, I don't steam or boil- all the vitamins are lost in the water. I have waterless cooking pots (really any pot with a tight fitting lid will work). Heat on low, no seasonings needed or oils or anything. Just cook till color develops. Try not to check too often, as natural moisture escapes every time the lid is opened.
I try to be sure my meat and eggs are pasture raised, wild caught, grass-fed: whatever is appropriate for that species. Corn fed, factory farmed meat is not healthy. It goes back to 'you are what you eat'- if the animals are eating poorly, so will their meat and eggs provide poor nutrition.
Of course, it's not about being perfect. Most people stick with an 80/20 rule. I am probably more like 90/10- While I'm 100% no grains, I do have sugar and other not completely healthy options sometimes...I do make occasional fun treats for my daughter (all grain free of course, but not necessarily super healthy- still healthier than the packaged junk tho!). Having no fun will lead to wanting of the 'bad' stuff....Can't have that! You can eat healthy and still have a treat that is reasonably within limits. We do go out to eat sometimes, just try to minimize the damage with good choices.
We absolutely eat no grains. We limit potatoes, but do have a sweet potato occasionally and very rarely gold/yellow potatoes. We limit refined sugar. No sodas. VERY LIMITED juices. Very limited soy. We eat some legumes, but not all that much (though we do have peanut butter fairly regularly). Limited dairy (though my daughter tends to have cheese and milk).
I have been told it's too expensive to eat like this, but it's really not. I get very few items in the inner aisles of the grocery store. Not buying all those bags and boxes of "food", really opens up the budget for more fresh, whole foods. Which is what most of my basket ends up being.
Of course food is only 1 aspect of health. We also need to build a strong body. So I do some hard workouts every week- like kickboxing, weightlifting, etc. I also do pilates or yoga regularly to help with flexibility and building the core. Running is great cardio that I incorporate on a regular basis. But also, I find places to work in a few minutes here and there. I bring extra shoes (I normally wear high heels at work) so I can get up and run the stairs a few times throughout the day. I work on the 4th floor, so this can add up. Also, our parking garage is 6 stories- that's 12 flights of stairs each way. I try to do that 3 times a week, 3 trips each time (36 up and 36 down). It only takes a few minutes each time, but it definitely seems to make a difference on my cardio performance. Stairs are like jumping rope- you get a lot of bang for your buck time wise, but it requires less coordination!
I know it seems counter-intuitive, but forcing yourself to get up and exercise INCREASES your energy. AI diseases are so good at zapping our energy, finding ways to increase it is so important. And when you feel better, it is easier to keep going. Objects in motion tend to stay in motion...
I also take a lot of vitamins. My liver doctor helped to work out the doses; PBC especially makes it hard to absorb fat soluble vitamins (A,D,E, and K), so those need to be taken in larger doses. I also take a lot of Vitamin C and B vitamins. Additionally PBC puts me at risk of osteoporosis, so I take a lot of calcium. Lastly, I take Alpha Lipoic Acid, slowly increasing over time. ALA has actually cured AI liver disease in previous studies! And I'm also taking Urso...For now. I will continue to take it until I can have a solid history of my liver being healthy. I'm only 1.5 years into this PBC journey, so it will take more time. The good thing is that I only take it about 75% of the time now and already I have some hair regrowth! And my liver numbers continue to improve.
I'm a single mom of a 4 yr old, going to grad school, working full time, have an active social life and I have 3 AI diseases; yet I feel better than I have in years. I really, really believe so many people could control or cure their chronic illnesses if they just had the right information and then put it to use. It makes me so sad when I see people suffering and taking pill after pill and not getting any better. I'm not against medicine, there are definitely times it's needed (especially for acute situations), but chronic diseases are not cured with a pill. If they were, they wouldn't be chronic. They are managed, some better than others, but no pill will cure a chronic illness.
I hope I've helped those that have asked for my info. Of course, I'm just one person and I'm not a doctor. Talk to your doctor. Get second and third opinions. Go to alternative medicine doctors. Read all the studies. Take what I say with a grain of salt, make an informed choice that's right for you. I can only just say what's working for me. If you want more details, please message or comment. I'll be happy to share!
Friday, August 2, 2013
New Numbers as of July 30, 2013
I had my blood drawn Tuesday. My numbers are looking even a bit better than last time!
Here's all the stats:
DATE Bilirubin ALP AST ALT
Normal .1-1.3 30-132 5-35 7-56
2/20/2012 1.7 937 235 389 Initial
3/6/2012 ?? 633 142 253 Almost 3 wks gluten free
4/16/2012 1 194 59 101 Gluten Free and Ursodiol
5/14/2012 1 160 36 56 Gluten Free and Ursodiol
7/6/2012 1.2 163 31 42 Gluten Free and Ursodiol
10/3/2012 1.4 221 58 113 Gluten Free and Ursodiol
01/31/2013 .9 201 47 72 Gluten Free and Ursodiol
04/30/2013 1.2 188 36 44 GF, Urso, Consistent green drinks&exercise
07/30/2013 1.1 185 36 36 GF, Urso, Consistent green drinks&exercise
So my numbers are pretty stable, slightly better. I've also added in some Alpha Lipoic Acid and Milk Thistle- both are supposed to help support liver function. I've been slowly incorporating, now that I see things are going well, I will start increasing the amount.
I also found out that the best indicators of liver health are albumin, bilirubin and prothrombin time (PT). I haven't been tracking exactly my albumin, but I do know on 2/2012 it was 4.6, on 5/14/12 it was 4.3 and this time is was 4.3 - Under 5 is good. So I'm good on that regard.
They didn't do the PT this time, but will next time and I know a previous time it was acceptable, but don't know the number.
My bilirubin is within normal range, but I'd really like to get it lower.
So I'm still working. I will always be working on this. Even when everything looks normal, I will be working to keep it that way. I won't ever have a time that I can just forget about this, but I am trying to get better about not 'worrying' about it. I am doing all that I know and continually trying to learn more. I will be armed with more information as time goes on.
I will never take for granted that I know all there is to know about this.
I will never take for granted my health.
I will never take for granted Zoe's health.
As my daughter she has a huge risk for this. Even if it's not prevented, this way of life will be beneficial for her. She will understand what is good for you and what isn't. She will know what it will take to keep herself healthy. She will have to make that decision for herself, but I will do my best to help her and to make it as painless as possible to maintain this sort of life.
Honestly, eating whole, fresh, unprocessed food and staying fit are technically good advice for everyone! So I hope even those without PBC can pull something of use from my journey as well.
Have a wonderful weekend everyone!
Here's all the stats:
DATE Bilirubin ALP AST ALT
Normal .1-1.3 30-132 5-35 7-56
2/20/2012 1.7 937 235 389 Initial
3/6/2012 ?? 633 142 253 Almost 3 wks gluten free
4/16/2012 1 194 59 101 Gluten Free and Ursodiol
5/14/2012 1 160 36 56 Gluten Free and Ursodiol
7/6/2012 1.2 163 31 42 Gluten Free and Ursodiol
10/3/2012 1.4 221 58 113 Gluten Free and Ursodiol
01/31/2013 .9 201 47 72 Gluten Free and Ursodiol
04/30/2013 1.2 188 36 44 GF, Urso, Consistent green drinks&exercise
07/30/2013 1.1 185 36 36 GF, Urso, Consistent green drinks&exercise
So my numbers are pretty stable, slightly better. I've also added in some Alpha Lipoic Acid and Milk Thistle- both are supposed to help support liver function. I've been slowly incorporating, now that I see things are going well, I will start increasing the amount.
I also found out that the best indicators of liver health are albumin, bilirubin and prothrombin time (PT). I haven't been tracking exactly my albumin, but I do know on 2/2012 it was 4.6, on 5/14/12 it was 4.3 and this time is was 4.3 - Under 5 is good. So I'm good on that regard.
They didn't do the PT this time, but will next time and I know a previous time it was acceptable, but don't know the number.
My bilirubin is within normal range, but I'd really like to get it lower.
So I'm still working. I will always be working on this. Even when everything looks normal, I will be working to keep it that way. I won't ever have a time that I can just forget about this, but I am trying to get better about not 'worrying' about it. I am doing all that I know and continually trying to learn more. I will be armed with more information as time goes on.
I will never take for granted that I know all there is to know about this.
I will never take for granted my health.
I will never take for granted Zoe's health.
As my daughter she has a huge risk for this. Even if it's not prevented, this way of life will be beneficial for her. She will understand what is good for you and what isn't. She will know what it will take to keep herself healthy. She will have to make that decision for herself, but I will do my best to help her and to make it as painless as possible to maintain this sort of life.
Honestly, eating whole, fresh, unprocessed food and staying fit are technically good advice for everyone! So I hope even those without PBC can pull something of use from my journey as well.
Have a wonderful weekend everyone!
Wednesday, May 1, 2013
New Bloowork numbers as of May 1, 2013
I had my blood drawn yesterday. My numbers are looking better!
Here's all the stats:
DATE Bilirubin ALP AST ALT
Normal .1-1.3 30-132 5-35 7-56
2/20/2012 1.7 937 235 389 Initial
3/6/2012 ?? 633 142 253 Almost 3 wks gluten free
4/16/2012 1 194 59 101 Gluten Free and Ursodiol
5/14/2012 1 160 36 56 Gluten Free and Ursodiol
7/6/2012 1.2 163 31 42 Gluten Free and Ursodiol
10/3/2012 1.4 221 58 113 Gluten Free and Ursodiol
01/31/2013 0.9 201 47 72 Gluten Free and Ursodiol
04/30/2013 1.2 188 36 44 GF, Urso, Consistent green drinks&exercise
Only the ALP is really out of normal range! (I know AST is one off, but that's pretty close). I feel like it is really getting better! I'm super happy about this. Maybe next time they'll all be normal- or at least the ALP could be closer and the rest in normal.
I am truly feeling like grain free, all the fruit/veggies, whole unprocessed foods, exercise and of course lots of love and support from Zoe and all my family and friends has made a huge difference. I feel like my story is going so differently from so many on the support boards. I want to scream it from the rooftops of how to help heal yourself. Not only are my numbers better, but I FEEL better. A friend told me my skin looks so healthy, I look rested and I have such a happy disposition. And it's true. I feel so good, it is amazing.
Zoe is so supportive too, she's amazing especially only being 4. She loves to help me exercise and does yoga with me. She's also really into picking the healthier foods and deciding what we should have for dinner. Its' really an awesome thing when such a little person wants to double up on veggies, that she prefers fresh/frozen that has been steamed instead of canned or slathered in unhealthy oils, that she loves to help grow our own food and that she will usually give just about anything at least a try. I hope these habits (and more) will help her grow into an adult that can make the right decisions for her health. So many adults let their childhood attachment to junk food rule their decisions, while they disregard their deteriorating health and body. Especially in her case, her decisions will have such an impact on her health. All I can do is give her the tools in her arsenal to help her, it will be up to her to make the choice of health.
In so many ways I am feeling very lucky. If my ex hadn't decided to leave, I wouldn't have started a new job and I wouldn't have gone to the doctor for just a check up (at the suggestion of my new co-worker) and found out I was stage 2 PBC. I probably wouldn't have found out until it was too late to turn it around because I wouldn't have gone until I was feeling REALLY bad. If I hadn't had another autoimmune condition first, I wouldn't have already started the research that led me to find the grain connection that is helping to heal all my AI diseases. And that dominoed into REALLY working toward overall health. Not focusing on weightloss or superficial goals, but real, true health. From all that I am clearly making huge changes inside and out. I'm looking great, but more importantly, I feel TONS better, I have more energy and my attitude toward life is so positive. I was so distressed at the beginning of all this, mostly because I was so worried about Zoe growing up in a split home, but she's doing good so far and bottom line: A split family is FAR better than watching your mom's health slowly fall apart and ultimately losing her when you're a teenager- which is ENTIRELY possible had it not been caught until my liver was too far gone.
I will forever be thankful for the luck I've had. I got a new chance at a longer, happy life to share with my daughter. I can definitely not be anything but ecstatic about that!
I hope everyone is having a great month!
Here's all the stats:
DATE Bilirubin ALP AST ALT
Normal .1-1.3 30-132 5-35 7-56
2/20/2012 1.7 937 235 389 Initial
3/6/2012 ?? 633 142 253 Almost 3 wks gluten free
4/16/2012 1 194 59 101 Gluten Free and Ursodiol
5/14/2012 1 160 36 56 Gluten Free and Ursodiol
7/6/2012 1.2 163 31 42 Gluten Free and Ursodiol
10/3/2012 1.4 221 58 113 Gluten Free and Ursodiol
01/31/2013 0.9 201 47 72 Gluten Free and Ursodiol
04/30/2013 1.2 188 36 44 GF, Urso, Consistent green drinks&exercise
Only the ALP is really out of normal range! (I know AST is one off, but that's pretty close). I feel like it is really getting better! I'm super happy about this. Maybe next time they'll all be normal- or at least the ALP could be closer and the rest in normal.
I am truly feeling like grain free, all the fruit/veggies, whole unprocessed foods, exercise and of course lots of love and support from Zoe and all my family and friends has made a huge difference. I feel like my story is going so differently from so many on the support boards. I want to scream it from the rooftops of how to help heal yourself. Not only are my numbers better, but I FEEL better. A friend told me my skin looks so healthy, I look rested and I have such a happy disposition. And it's true. I feel so good, it is amazing.
Zoe is so supportive too, she's amazing especially only being 4. She loves to help me exercise and does yoga with me. She's also really into picking the healthier foods and deciding what we should have for dinner. Its' really an awesome thing when such a little person wants to double up on veggies, that she prefers fresh/frozen that has been steamed instead of canned or slathered in unhealthy oils, that she loves to help grow our own food and that she will usually give just about anything at least a try. I hope these habits (and more) will help her grow into an adult that can make the right decisions for her health. So many adults let their childhood attachment to junk food rule their decisions, while they disregard their deteriorating health and body. Especially in her case, her decisions will have such an impact on her health. All I can do is give her the tools in her arsenal to help her, it will be up to her to make the choice of health.
In so many ways I am feeling very lucky. If my ex hadn't decided to leave, I wouldn't have started a new job and I wouldn't have gone to the doctor for just a check up (at the suggestion of my new co-worker) and found out I was stage 2 PBC. I probably wouldn't have found out until it was too late to turn it around because I wouldn't have gone until I was feeling REALLY bad. If I hadn't had another autoimmune condition first, I wouldn't have already started the research that led me to find the grain connection that is helping to heal all my AI diseases. And that dominoed into REALLY working toward overall health. Not focusing on weightloss or superficial goals, but real, true health. From all that I am clearly making huge changes inside and out. I'm looking great, but more importantly, I feel TONS better, I have more energy and my attitude toward life is so positive. I was so distressed at the beginning of all this, mostly because I was so worried about Zoe growing up in a split home, but she's doing good so far and bottom line: A split family is FAR better than watching your mom's health slowly fall apart and ultimately losing her when you're a teenager- which is ENTIRELY possible had it not been caught until my liver was too far gone.
I will forever be thankful for the luck I've had. I got a new chance at a longer, happy life to share with my daughter. I can definitely not be anything but ecstatic about that!
I hope everyone is having a great month!
Sunday, March 3, 2013
It's been a year
I am tired somewhat - especially on days I don't have my green drink.
My hair is still falling out so fast I have no idea how I have any left on my head. It's crazy thin now. I am pretty sure it's the meds, though my liver doctor said he's never heard of that being a side effect, but on the PBC support boards EVERYONE says that Urso has their hair falling out pretty badly. My most recent trick has been to curl it. It makes it look so much more full that way. It's been a fun thing to do with Zoe too. She likes to have curled hair like mommy, so we wear curlers together at bed time. And man, her hair looks super awesome curled. Love it!
I am doing everything I have found (either through my own research or from the multiple doctors I've talked to about this) to help my liver heal and my immune system stop attacking it:
I take a huge green drink every morning that contains tons of veggies and fruit - Always a combination of lemon/lime, kale/spinach, cucumber, carrots, banana, celery, frozen berries, tomatoes, milk thistle, aloe vera juice - Things that are supposed to help in liver repair / support. I also eat an apple a few times a week - the pectin is supposed to also support liver function.
I take all the fat soluble vitamins - ADEK - plus calcium and extra C. My liver doctor said with liver disease it's tough to absorb enough vitamins. And Osteoporosis is a common side effect of liver disease. So I take everything he told me plus the extra C since that helps with immune function as well.
I am 100% strict on grain free - this is to hopefully help my immune system so that the attack might stop.
Of course no alcohol. Super minimal coffee and soda (Like 1 coffee a week and maybe 1 soda every couple/few weeks). But I added in lots of green tea, as that's supposed to be good for the body.
I've been working out 5 or 6 days a weeks. Besides overall health, exercising is another way to get toxins moving - this may be helpful for my liver in multiple ways. Plus it does help increase energy levels.
And tons and tons of water to help flush things out as well.
I REFUSE for liver disease to be the death of me. I will live to be old and play with my grandkids. I was diagnosed at 34 - average time to death from diagnosis is 16 years - This. Will. Not. Be. My. Story. I will live well past 50. I will see Zoe grow to an adult and I will be there for her through it all - AND I will be in good health - NOT bedridden or on disability.
A positive attitude is, IMO, just as big a part of all this as any of the other steps I'm taking. And I have a very good outlook on this and on life in general. Life is what you make of it! I was talking to a friend about how someone had a good attitude about a bad situation and he said "You have the best attitude about things of anyone I've ever met! Life hands you lemons and you say screw the lemonade, I'm making lemon cake!" I said "Grain free of course!" :)
I hope you are able to make lemon cake out of your basket of lemons. If not, at least try finding one thing about your situation that's good. If you focus on the good, the bad will just become a small part of your life and eventually you will start to notice it less and less.
In order to carry a positive action, we must develop here a positive vision.
----Dalai lama
Friday, February 1, 2013
Update 02/01/2013
Not much has been going on on the PBC front the last couple months, but since the last update Zoe and I have been very busy otherwise.
We sold our old house, bought a new house, moved and celebrated her birthday and Christmas. It's been super stressful, but rewarding at the same time.
I got my liver numbers tested again yesterday. If you recall last time my numbers had gone up significantly from the time before. This time the numbers are lower than last time, but still not low enough.
What I've been doing right:
Diligently eating grain free
Drinking a large, nutritionally dense green drink every morning
Exercising regularly
What I need to improve on:
I think I've been drinking too much coffee so I've just given up coffee completely and replaced with green tea
I think I should try to limit sugar and salt intake more- both cause inflammation and may be contributing to higher numbers
I've not been diligent about taking my vitamins - need to get better at that.
What I plan on adding:
I've gotten some information regarding naturally improving liver function so I plan to implement some. I've already implemented specific foods that help with the liver (like lemons/limes, avocados, apples, green tea, etc) as often as possible, but I also plan on slowly incorporating things like milk thistle and other herbs and foods that are known to support the liver.
I really want to get this in check and hopefully lower or completely quit my urso. It causes other problems that I am non too thrilled with. I've also been having liver pain pretty often, which the urso does nothing to help. I'm hoping these natural methods will provide these means.
I will get my numbers checked again at the end of April. Fingers crossed they get better!
Bilirubin ALP AST ALT
Normal .1-1.3 30-132 5-35 7-56
2/20/2012 1.7 937 235 389 Initial
3/6/2012 ?? 633 142 253 Almost 3 wks gluten free
4/16/2012 1 194 59 101 Gluten Free and Ursodiol
5/14/2012 1 160 36 56 Gluten Free and Ursodiol
7/6/2012 1.2 163 31 42 Gluten Free and Ursodiol
10/3/2012 1.4 221 58 113 Gluten Free and Ursodiol
01/31/2013 0.9 201 47 72 Gluten Free and Ursodiol
We sold our old house, bought a new house, moved and celebrated her birthday and Christmas. It's been super stressful, but rewarding at the same time.
I got my liver numbers tested again yesterday. If you recall last time my numbers had gone up significantly from the time before. This time the numbers are lower than last time, but still not low enough.
What I've been doing right:
Diligently eating grain free
Drinking a large, nutritionally dense green drink every morning
Exercising regularly
What I need to improve on:
I think I've been drinking too much coffee so I've just given up coffee completely and replaced with green tea
I think I should try to limit sugar and salt intake more- both cause inflammation and may be contributing to higher numbers
I've not been diligent about taking my vitamins - need to get better at that.
What I plan on adding:
I've gotten some information regarding naturally improving liver function so I plan to implement some. I've already implemented specific foods that help with the liver (like lemons/limes, avocados, apples, green tea, etc) as often as possible, but I also plan on slowly incorporating things like milk thistle and other herbs and foods that are known to support the liver.
I really want to get this in check and hopefully lower or completely quit my urso. It causes other problems that I am non too thrilled with. I've also been having liver pain pretty often, which the urso does nothing to help. I'm hoping these natural methods will provide these means.
I will get my numbers checked again at the end of April. Fingers crossed they get better!
Bilirubin ALP AST ALT
Normal .1-1.3 30-132 5-35 7-56
2/20/2012 1.7 937 235 389 Initial
3/6/2012 ?? 633 142 253 Almost 3 wks gluten free
4/16/2012 1 194 59 101 Gluten Free and Ursodiol
5/14/2012 1 160 36 56 Gluten Free and Ursodiol
7/6/2012 1.2 163 31 42 Gluten Free and Ursodiol
10/3/2012 1.4 221 58 113 Gluten Free and Ursodiol
01/31/2013 0.9 201 47 72 Gluten Free and Ursodiol
Friday, November 23, 2012
A Happy PBC Friendly Thanksgiving
Thanksgiving has been my favorite holiday for as long as I can remember. The food. The family. The food :)
The problem this year is that it's my first with PBC and living gluten free- grain free. I've been thinking about how to make actual good replacements for thanksgiving. Not just good enough, but really good.
Problem 1- stuffing. I have been working on my bread recipe anyway, but stuffing makes a whole new challenge. The bread has to taste good AND be strong enough to not just turn to mush when mixed with seasonings and broth. I made the perfect recipe! The loaf is my own creation sort of mixing a few recipes. It has coconut/garbanzo/cashew/almond flours and it is really great.
Problem 2- gravy. I searched and searched and really didn't like any of the suggestions. So I ended up just going with reduce-reduce-reduce and adding about a 1/2 tsp of guar gum. It was fantastic.
Problem 3- candied yams. One of my turkey day favorites. I ended up making them from scratch and they were BETTER than the traditional! Even my sister who hates sweet potatoes actually loved these! Yay! Total win!
Problem 4- fruit / ambrosia salad. This is normally drained canned fruit, marshmallows, cool whip- all of which have corn in them. And nuts and coconut. I ended up making homemade marshmallows for this and the yams (which everyone loved so much the whole batch is gone already!). And homemade whipped cream (another hit everyone liked better than the premade stuff). And we found the canned fruits not in corn syrup.
My favorite foods at thanksgiving were saved! It was so good, I honestly can't tell I even had to eat differently. Even Zoe ate a really good sized plate of everything. So that says a lot.
And honestly the homemade stuff tastes better and is really so easy it doesn't make sense to have purchased it premade in the first place.
I hope everyone had a great day!
Recipes
Marshmallows
1/2 cup cold water
2 packets gelatin
1/2 cup water
2 cups sugar
2 tbl honey
1/4 tsp salt
1/2 cup sugar
1 tsp vanilla
Blend 1/2 cup sugar into powdered sugar in a blender/bullet/food processor until a fine powder.
Coat a glass pan with oil very lightly, Then sprinkle a small amount of powdered sugar and coat bottom and sides. Put rest of powdered sugar in a sealed bowl.
Whisk together 1/2 cup water and gelatin set aside.
Put 1/2 cup water, 2 cups sugar, salt and honey in a sauce pan. Clip a candy thermometer onto the pan. Put on high. Mix thoroughly. Mix often until mixture is dissolved then stop mixing and don't mix again. Take a wet pastry brush and brush down the inside walls of the pan to wash down any sugar crystals (or a very wet paper towel will also work).
Once a temp of 238 degrees is reached take off the heat.
Turn the mixer on in the gelatin slowly start pouring hot mixture in on medium.
Increase to high. Mix until mixture is just warm. Add in vanilla just before done.
Pour into coated pan.
Cover or place in a cool oven to prevent fuzz from sticking to the top.
Let cool for 4 or more hours or overnight.
After cool and firm, dust top with powdered sugar use a knife coated in powdered sugar and slice into desired size squares.
Roll squares in powdered sugar. Place in sealed bowl. Will keep for 2 plus weeks.
Whipped cream
3/4 cup whipping cream
1 tbl sugar
1/4 tsp vanilla
Run sugar through the blender to turn into powdered sugar.
Whip cream on high with hand mixer. When it is about halfway firm. Add vanilla and sugar. Continue whipping till firm.
Candied sweet potatoes
4 sweet potatoes
3/4 cup brown sugar
3/4 cup butter
Generous sprinkle cinnamon
Sprinkle nutmeg
Small Sprinkle Salt
Homemade marshmallows
Peel and dice to bite size, sweet potatoes
Boil till slightly soft
Sauté other ingredients except marshmallow
Drain potatoes
mix with sauce bake covered at 400 for about 15-20 minutes.
Stir slightly mashing some to thicken the sauce.
Add marshmallows bake uncovered for a couple of minutes.
All purpose bread
1/4 cup coconut flour
1/4 cup garbanzo flour
3/4 cup almond flour
3/4 cup cashew flour
3/4 teaspoon of baking soda
1/2 tsp cream of tartar
1/2 teaspoon of sea salt
6 eggs
1/2 tablespoon of apple cider vinegar
1 cup of yogurt
1/4 cup butter, melted
1/4 cup honey
Preheat convection oven to 300.
Lightly oil loaf pan.
Sift together dry ingredients.
Whip eggs with hand mixer then mix in all other wet ingredients.
Using a hand mixer, Mix together thoroughly until completely smooth. Pour into pan. Bake for 1 hour to 1 hour 15 minutes.
Let cool for ten minutes then turn out of pan and let finish cooling. Slice when cool.
Friday, October 26, 2012
PBC update October 26, 2012
First I just want to share a really good video that talks about gluten and children. This is actually part 2 of a series. Part 1 is more focused on infancy. It's very informative. It gets a little static-y, but it's still good info.
On my front, I have been having quite a bit of liver pain lately. I don't know whats up with that. It's not debilitating or anything, but it's random sharp pains that are sometimes quite frequent.
Man I am just so sad for Zoe. The thought that she'll get this, or celiac or some other auto immune disease is just so frustrating. There's just so many complications with these diseases, in addition to the disease itself.
High risk of damage and/or cancer to just about every organ in the body.
Osteoporosis: I have to get a bone scan done every 2 years because people with auto immune diseases are at a very high risk of severe bone loss.
Chronic pain in just about any part of your body.
The list goes on and on and there is no cure for any of it. This diet helps to slow progress or may even help to prevent future damage, but there is no cure. There is no fix. Once the immune system is triggered, there is no going back. What's done is done. That is what makes me the saddest for Zoe. When she is 15, 20, 30 - however old she might be when triggered- how will we look at her and say to her that we knew and didn't TRY to prevent? I will be able to look at her. I am doing everything in my power and I will continue to do so as long as there is breath in my body. But not everyone in her life cares about this, and there's where the problem lies. Prevention? Ha. Is there a guarantee it will prevent? No? Oh, then I will not try.
That is equivalent to:
Does a seatbelt guarantee I will survive a car crash? No? Then I won't wear it. ::In fact, my mom was in an accident before seatbelts were mandatory and had she been wearing it, she would have been decapitated. But does she wear one now? Yes. Should we all wear one? Yes. Why? Because, MOST of the time, they are helpful, but no, there are no guarantees.
Does sunblock guarantee I will not get skin cancer? No? Then I won't wear it. ::In fact, lots of people get cancerous spots even if they diligently wear sun block, yet we do it anyway because there is a CHANCE it could help, or at least lessen the severity.
Does doing my best at whatever I am doing guarantee I will be successful? No? Then I won't even try. ::In fact, we FAIL most of the time, and success usually only comes after MANY failures.
Perfection and guarantees are not feasible in this life in most instances. We all live by odds and chances. The only thing that almost always guarantees failure is NOT DOING ANYTHING AT ALL. Other than that, it is left up to chances and odds. We can, and should, do things to put the odds in our favor, but there is never a guarantee.
Not trying to help Zoe not get sick just because YOU have sentimental value to a particular food is down right irresponsible. She DESERVES a happy, healthy life. She DESERVES the chance to not have to worry about when her liver will fail or if she will have severe bone loss before she is even middle aged or any other of the myriad of problems that can come with this. She DESERVES the chance to not have to worry about whether or not she will grow old. She DESERVES the chance to look at food with the attitude of it being sustenance, instead of addiction or sentimentality. She DESERVES our commitment to her health.
Sure, just eating the regular birthday cake at a party is easier. Maybe getting to eat crackers and cookies off the shelf is easier, and some might label as fun memories. BUT she has already demonstrated that she truly loves the gluten free, homemade, non-junk food version of many of those foods, with which she can have fun memories just as easily. Yes, she likes some of the regular versions too, but why not just go with the version that is safer for her??
She didn't ask for this, I didn't ask for this FOR her, it just is. And honestly, it's a fine and easy thing to change the way we eat in this way. It's really not hard at all. MUCH easier that breaking the addiction to stupid junk food. And DEFINITELY much easier than fighting a disease. No there is no guarantee that the disease will not trigger EVEN with the diet changes now, but there is a CHANCE. Having a chance is worth it. Doing something is better than just throwing caution to the wind and not caring till you are sick. In this day and age, that's like saying: "I'll worry about watching my cholesterol AFTER I have my heart attack" "I'll worry about being morbidly obese AFTER I have caused permanent damage to my joints and I have diabetes" "I'll worry about wearing a helmet AFTER I have my motorcycle accident", so on and so forth. It's insane and archaic. Once upon a time those were things that people did, but in today's world we know so much more and it's plain ridiculous to ignore valuable information like this. And, honestly, if something does trigger, at least she wouldn't have that emotional connection with things she can't eat...
But, unfortunately, this IS what people who 'care' for her think. This IS the method they are using. "Enjoy life and eat like you haven't a care in the world! Worry about it when you are diagnosed with an incurable disease that will cause you to eat this way anyway. Oh yea, and I KNEW you had a very good risk this would happen and I chose to feed you lies and junk food because I cared too much about MY food issues to see how my choices could affect you".
Yea, that's how it's going. And I try very hard to stop worrying about it. I try hard to convince myself that at least she's not eating that stuff when she's with me, but that's like saying "Well if I put sunblock on her, all that sun she's getting when she's not with me won't cause her cancer" "Well if I make her wear a helmet, those times that she's not wearing one will be canceled out", etc. It doesn't work that way. But I still try my best, if for no other reason than to TRY to help shape her view of what is safe and what isn't for her. Or maybe, just maybe, it might SLOWDOWN the time till something is triggered. Maybe she'll get a few extra years until this cannot be ignored. It will be harder for her then. She will have addictions and emotional connections with things she will have to give up. She will have irreparable damage to contend with. She will have to come to terms with having a completely different way of life, as opposed to just continuing on in the way she had been.
Think about it - If you got diagnosed with a disease and the treatment was to eat a particular diet, and that's what you already do, you will probably think "Ok, that's cool, I'm used to it". OR if it is a complete overhaul you'll probably focus instead on what you CAN'T have "I have to give up THAT? I cant' have THAT anymore??!". Big difference of perspective and we have all heard the saying "A situation is 10% the situation and 90% how we react to it".
Well, anyway, that's not something I can prevent. I can be sad for her, but ultimately it will just be something she will have to deal with. People can either make it harder or easier on her. I can only do what I can do...
Ugh, I always get so passionate about this. I can't help it - she's such an awesome person, I want the very best for her.
It's Friday! Have a great weekend! I get to spend it with Zoe so that makes me happy!
Wednesday, October 3, 2012
Hit a snag and other updates
Well, I'm a bit bummed. My numbers have gone up. I've been really good. Absolutely zero gluten, low sugar, no alcohol (of course). Just all really fresh, whole food. But I'm not giving up. It's just a set back, but it's not the end of the world.
OK the numbers. For a consolidated place to look I'm going to put them all here.
So, for some reason my numbers are a lot higher than they were in July. This is disconcerting. I was really expecting to go in and see everything in the normal range.
I will just have to work harder. I will not be beat by this. It just needs to motivate me more. I have been trying to get back to working out (before my pinky toe issues), I think maybe that might help? I don't know, but it's worth a try.
16 years. That's the average length of time from diagnosis to death. 16 years. I don't like that idea. I'd be 50, Zoe 19. Nope. I don't accept that. No teenager should have to even consider losing a parent already.
AND it makes me work that much harder for preventing for Zoe. What if this doesn't cure me but only just extends the time? It makes me double up my efforts for Zoe. If it can't be cured, prevention must be of the utmost importance. And PBC, per the info from my doctor, tends to hit the second generation younger than the first (and remember, mother / daughter pairs are the most common familial pairs for this- AND she has a 1,000 fold chance of getting this because she's my kid). So if it hits her younger, what will it be? I was 34. 30? Younger? And with 16 years? No, I don't like this. Prevention is the key. Just as it is in so many things, it is especially in this case.
Plus she has the genes for Celiac disease. I just have Gluten Intolerance. PBC is even more common with those with Celiac disease. The odds are stacking up against her and none of these things have a cure. Just a treatment in which gluten is removed and meds taken- so why not remove the gluten now - if it will have to go anyway, why not take that chance that it might even prevent these diseases from triggering? I don't have a problem with that. If there were something out there to do that is completely safe and could prevent a particular disease, I think someone would be crazy not to try it. I mean, it's not painful or dangerous. We actually eat healthier than just about everyone I know- so what's not to like about it??
It's hard though. I'm not the only person with Zoe. She has influence from many other people, and some of those people don't see the value in prevention- Instead taking the "we'll think about this after she gets sick, until then she should just have fun and eat whatever she wants", but I know in my heart waiting until she's sick will be such a harder road to climb. It's not fair to have her get diagnosed even younger than me and then have to worry about not even making it to mid-life??
Not eating a piece of toast or a gummy bear seems a lot easier than facing your mortality in your 30's.
Not having that cookie or pasta seems a lot easier that being addicted to it and then being told you can never have it again.
Not having that cake or cracker seems a lot easier than being told you will most likely get a liver transplant in the coming years, and then you have a very good chance of that one being destroyed too because this disease is in your Immune System, not your liver - the liver is just the victim.
Choosing to eat whole, fresh foods like meat, fruits, veggies, seeds and nuts seems a lot easier than finding out you have intestinal cancer from your Celiac disease (which commonly happens along with various liver diseases, thyroid disease, RA, type 1 diabetes, etc, etc).
Call me crazy, but those all seem like easier things. I have perfected the gluten free alternatives to just about anything you can normally get - and I make them even better with less sugar, whole foods and minimal processing. I've learned more about cooking from scratch than I ever knew and I can say- it makes complete sense. No wonder we're all so sick - the crud in the boxes and bags in the store is just appalling.
Anyway, enough of that for now. On a good note- Zoe's dad and I toured a school today and have decided we really like it. It's Montessori style learning, which seems like it might be right up Zoe's alley. They foster learning with each of the kids at their own pace. And since Zoe always seems so far ahead, this will be great for keeping her engaged. It's a small school, which feels like a good thing. It's very clean and they do all kinds of extra things like dance, spanish, music, trips to the library and to the nursing home. All things we think will be really good for Zoe. They even have times that the parents get to be involved in various school activities, so this seems like it will be great for all of us. She will start in a couple of weeks. Costs an arm and a leg to get it started, but after that the price isn't too much more than I'm paying now. So that's a good thing! Some places that also seemed really good were $1200+ a month. I just can't afford that right now. Hopefully by the time she's completed this school (it goes through first grade) there will be another option within the budget for her. We'll have to cross that bridge when we get to it, but for now we think she will really like this school.
One last item to mention- Friday is my divorce mediation. It's not something I'm looking forward to, that's for sure, but it will be good just to get this all done. For the longest time I just wanted to believe it wasn't going to happen, that some how things would heal, but I know that's not true. I know it's not possible. Once someone has decided, they have decided I guess. But I guess it's been long enough now that I have accepted it - for me anyway, I'm still having trouble with it for Zoe to have to grow up this way. But I AM ready for it just to be done, one way or the other. Living in limbo stinks. I don't want to be divorced, but I think I hate being 'separated' even more - it's just hard to be in-between...Like balancing on a wire 10 stories up, any wrong move will send you crashing down. Yea, I'm ready just to get to the other side - even if it's not the side I wanted. I always say, things happen for a reason, just the way they were supposed to. So I've already found many reasons to be thankful my life has gone down this unexpected path. I try not to focus on the negatives, and just think about those positives. I know it will be tough for Zoe, but I just keep trying to help her see the good things about her life - not to minimize her feelings about the bad things, but just to help her see there are lots of good things too. She and I both benefit from this attitude!
Well, I think that about covers it for now!
OK the numbers. For a consolidated place to look I'm going to put them all here.
| Bilirubin | ALP | AST | ALT | ||
| Normal | .1-1.3 | 30-132 | 5-35 | 7-56 | |
| 2/20/2012 | 1.7 | 937 | 235 | 389 | Initial |
| 3/6/2012 | ?? | 633 | 142 | 253 | Almost 3 wks gluten free |
| 4/16/2012 | 1 | 194 | 59 | 101 | Gluten Free and Ursodiol |
| 5/14/2012 | 1 | 160 | 36 | 56 | Gluten Free and Ursodiol |
| 7/6/2012 | 1.2 | 163 | 31 | 42 | Gluten Free and Ursodiol |
| 10/3/2012 | 1.4 | 221 | 58 | 113 | Gluten Free and Ursodiol |
So, for some reason my numbers are a lot higher than they were in July. This is disconcerting. I was really expecting to go in and see everything in the normal range.
I will just have to work harder. I will not be beat by this. It just needs to motivate me more. I have been trying to get back to working out (before my pinky toe issues), I think maybe that might help? I don't know, but it's worth a try.
16 years. That's the average length of time from diagnosis to death. 16 years. I don't like that idea. I'd be 50, Zoe 19. Nope. I don't accept that. No teenager should have to even consider losing a parent already.
AND it makes me work that much harder for preventing for Zoe. What if this doesn't cure me but only just extends the time? It makes me double up my efforts for Zoe. If it can't be cured, prevention must be of the utmost importance. And PBC, per the info from my doctor, tends to hit the second generation younger than the first (and remember, mother / daughter pairs are the most common familial pairs for this- AND she has a 1,000 fold chance of getting this because she's my kid). So if it hits her younger, what will it be? I was 34. 30? Younger? And with 16 years? No, I don't like this. Prevention is the key. Just as it is in so many things, it is especially in this case.
Plus she has the genes for Celiac disease. I just have Gluten Intolerance. PBC is even more common with those with Celiac disease. The odds are stacking up against her and none of these things have a cure. Just a treatment in which gluten is removed and meds taken- so why not remove the gluten now - if it will have to go anyway, why not take that chance that it might even prevent these diseases from triggering? I don't have a problem with that. If there were something out there to do that is completely safe and could prevent a particular disease, I think someone would be crazy not to try it. I mean, it's not painful or dangerous. We actually eat healthier than just about everyone I know- so what's not to like about it??
It's hard though. I'm not the only person with Zoe. She has influence from many other people, and some of those people don't see the value in prevention- Instead taking the "we'll think about this after she gets sick, until then she should just have fun and eat whatever she wants", but I know in my heart waiting until she's sick will be such a harder road to climb. It's not fair to have her get diagnosed even younger than me and then have to worry about not even making it to mid-life??
Not eating a piece of toast or a gummy bear seems a lot easier than facing your mortality in your 30's.
Not having that cookie or pasta seems a lot easier that being addicted to it and then being told you can never have it again.
Not having that cake or cracker seems a lot easier than being told you will most likely get a liver transplant in the coming years, and then you have a very good chance of that one being destroyed too because this disease is in your Immune System, not your liver - the liver is just the victim.
Choosing to eat whole, fresh foods like meat, fruits, veggies, seeds and nuts seems a lot easier than finding out you have intestinal cancer from your Celiac disease (which commonly happens along with various liver diseases, thyroid disease, RA, type 1 diabetes, etc, etc).
Call me crazy, but those all seem like easier things. I have perfected the gluten free alternatives to just about anything you can normally get - and I make them even better with less sugar, whole foods and minimal processing. I've learned more about cooking from scratch than I ever knew and I can say- it makes complete sense. No wonder we're all so sick - the crud in the boxes and bags in the store is just appalling.
Anyway, enough of that for now. On a good note- Zoe's dad and I toured a school today and have decided we really like it. It's Montessori style learning, which seems like it might be right up Zoe's alley. They foster learning with each of the kids at their own pace. And since Zoe always seems so far ahead, this will be great for keeping her engaged. It's a small school, which feels like a good thing. It's very clean and they do all kinds of extra things like dance, spanish, music, trips to the library and to the nursing home. All things we think will be really good for Zoe. They even have times that the parents get to be involved in various school activities, so this seems like it will be great for all of us. She will start in a couple of weeks. Costs an arm and a leg to get it started, but after that the price isn't too much more than I'm paying now. So that's a good thing! Some places that also seemed really good were $1200+ a month. I just can't afford that right now. Hopefully by the time she's completed this school (it goes through first grade) there will be another option within the budget for her. We'll have to cross that bridge when we get to it, but for now we think she will really like this school.
One last item to mention- Friday is my divorce mediation. It's not something I'm looking forward to, that's for sure, but it will be good just to get this all done. For the longest time I just wanted to believe it wasn't going to happen, that some how things would heal, but I know that's not true. I know it's not possible. Once someone has decided, they have decided I guess. But I guess it's been long enough now that I have accepted it - for me anyway, I'm still having trouble with it for Zoe to have to grow up this way. But I AM ready for it just to be done, one way or the other. Living in limbo stinks. I don't want to be divorced, but I think I hate being 'separated' even more - it's just hard to be in-between...Like balancing on a wire 10 stories up, any wrong move will send you crashing down. Yea, I'm ready just to get to the other side - even if it's not the side I wanted. I always say, things happen for a reason, just the way they were supposed to. So I've already found many reasons to be thankful my life has gone down this unexpected path. I try not to focus on the negatives, and just think about those positives. I know it will be tough for Zoe, but I just keep trying to help her see the good things about her life - not to minimize her feelings about the bad things, but just to help her see there are lots of good things too. She and I both benefit from this attitude!
Well, I think that about covers it for now!
Wednesday, May 16, 2012
Really Good News and Info!
I recently went to my primary care doctor and had some bloodwork done to test the gluten stuff. Turns out I am now diagnosed Gluten Intolerant, not Celiac Disease, and she stressed that I must stay on a gluten free diet to help heal my liver and skin autoimmune diseases (Wow! I'm not crazy, imagine that!). And she said, honestly that I may have Celiac Disease, but we only did a 2 week gluten challenge - which may not have been enough to get the celiac antibodies back. But I couldn't handle anymore than the 2 weeks. I was really feeling cruddy - I didn't think I felt so bad before, but either it was more noticeable after being gone, or maybe it was legitimately worse since it was gone then reintroduced. But all my skin conditions had horrible flareups, I was EXHAUSTED, super depressed, my heartburn / reflux returned and I was so bloated my pants were too tight! I was so happy to just stop that.
She also agreed that keeping Zoe off gluten, as much as possible, is a good idea. She, in general, said it's best for really everyone to avoid the types of foods that contain gluten (processed, packaged foods, breads, junk food, etc). She said since I'm gluten intolerant, it means that I don't have to be AS vigilant as celiac - like I shouldn't worry SO much about cross contamination or whatever, but she said I very much need to keep gluten out as a whole. And for Zoe, she said keeping MOST of her diet with the whole, real foods that I've been doing is best. But for me not to stress if someone 'glutens' her once in a while - the fact that she's eating right most of the time will probably protect her.
So all very good news!
And she did another LFT to see if the 2 week challenge affected my liver. I am happy to say that my numbers are still down!
1 month ago (4/16):
Bilirubin 1.0
ALP 194
AST 59
ALT 101
5/14 (Everything is down a little more, but I'm guessing it was down further than this and the challenge probably brought it up a bit, but it's still good! And honestly, maybe I didn't eat enough gluten - it just made me feel so bad, I just couldn't - so I only ate 2 slices of whole wheat toast each morning - well that one time I had a small Schlotzsky's for lunch - just kind of a final farewell!)
Bilirubin 1.0
ALP 160
AST 36
ALT 56
Bili is normal, ALP is only 30 points from normal, AST and ALT are both 1 away from being normal! So this is all VERY good.
As a side note- My doctor actually told me I am doing everything right and she believes I might actually COMPLETELY heal my liver! Officially there is no cure for PBC, but she said given my numbers and the relief I have from my other autoimmune/skin conditions, she believes I can definitely BEAT THIS!
It is just beyond words to hear this coming from her!
Hope everyone is having a great week!!
Monday, April 30, 2012
Several studies identifying link for PBC and Celiac
"There is, however, growing evidence that the loss of the intestinal barrier function typical of celiac disease could be responsible of the onset of other autoimmune disease."
"Celiac disease is, however, a unique example of autoimmunity, since early serological diagnosis and dietary treatment can revert the autoimmune process and can prevent its severe, sometimes life-threatening complications. Therefore, the common wisdom among experts in the field supports the notion that individuals affected by celiac disease should be treated, irrespective of the presence of symptoms and/or associated conditions. "
OK, even the "Celiac Disease for Dummies" Book says "PBC is the most common of the serious liver diseases found in people with celiac disease". Ugh seriously? Why did our odds have to go that way??
PBC and Celiac
Liver Damage and Celiac
So let's see here- Zoe has both Celiac genes, plus the huge probability of getting PBC, plus there is apparently a big connection with Celiac and PBC in the first place AND Celiac, with or without PBC has been shown to cause liver damage?!?!? OMG! Her poor liver is doomed if we don't take action!
Another article stating the link
Another Study with PBC & Celiac
"An association between primary biliary cirrhosis (PBC) and coeliac disease now seems well established."
"There may be a correlation between the duration of exposure to gluten and the risk of developing autoimmune disease."
" In both diseases there is a female preponderance but this is much more noticeable in PBC. "
So yea, getting gluten out now may be really helpful in preventing not only Celiac, but also PBC.
Saturday, April 28, 2012
Our Genetic Testing Results
I've been meaning to update for a few days, but on-call has been really busy.
I got the results from the genetic testing I ordered for Zoe and me.
They tested 4 genes. HLA-DQ1, HLA-DQ2, HLA-DQ3 and HLA-DQ8.
HLA-DQ1 and HLA-DQ3 are the 'gluten sensitivity' genes.
HLA-DQ2 and HLA-DQ8 are the 'celiac' genes.
I have HLA-DQ1 and HLA-DQ8. So one of each.
Unfortunately, Zoe has HLA-DQ2 and HLA-DQ8, both the celiac genes.
Having the genes doesn't guarantee that she will get celiac, but if she gets the right environmental trigger- she is predisposed to get it. To put it another way- you are 99% likely NOT to get it if you don't have these genes (nothing is ever 100%, and there are certainly more than just these 2 genes are work, but these are the only 2 they know about so far). With only HLA-DQ8, you have a small chance of getting it. With only HLA-DQ2 your chance is a lot bigger as this is the gene primarily associated with celiac. If you have both, HLA-DQ2 and HLA-DQ8, you chances are very, very good.
Of course, there's always a chance that it doesn't get triggered. The primary trigger for celiac is gluten. And the treatment for celiac is living gluten free. So this information has confirmed that not eating gluten is the right thing to do. Even if the trigger ends up being an illness or a bad reaction to meds, and she still becomes celiac- At least she'll already be used to not eating gluten so it's not a huge life changer.
It's so strange how sometimes in life you start going down a path that you had no idea how much you really should be going that way. I mean, I had started researching gluten and autoimmune diseases just days before I was diagnosed with PBC. Then I found out how much of a chance Zoe has of also getting this, and decided to take us both completely gluten free- and now the genetic testing comes back that she has the 'celiac genes'. That seems like someone was pushing us that direction for some reason - Call it whatever you want, Guardian Angel, Fate, whatever- It's like it was preparing us to accept this change so that it would be easier. Or whatever, I'm not a philosopher, just saying it is really crazy how it has all worked out.
I was pretty sad after I found out she had these genes. As if worrying about her getting PBC wasn't bad enough, knowing that her risk of celiac is so high is just another worry to add to the stack. (Plus once you have 1 autoimmune disease, it tends to have a domino effect, I've already got 2. I just don't want her quality of life to be affected). But then I started thinking about it- we're actually pretty lucky. To know this stuff when she's only 3?! To get to possibly prevent or lessen something like this for her is a chance few get. So, always looking for the silver lining, this is actually a good thing to have found out already.
I was reading an article recently on genetic testing. They don't know everything yet, but what they do know should be put to good use. And genetics just need a cheek swab, totally non-invasive. So there is a thought circulating the medical industry to run the testing for known diseases (like celiac) on newborns. It can be so beneficial to know in advance if someone will be prone to getting a disease. In some cases they can prevent, in others they will just know to start yearly testing at an early age because early intervention can improve quality of life. Very interesting.
Anyway, that's it for now. Hope everyone is having a great weekend!
I got the results from the genetic testing I ordered for Zoe and me.
They tested 4 genes. HLA-DQ1, HLA-DQ2, HLA-DQ3 and HLA-DQ8.
HLA-DQ1 and HLA-DQ3 are the 'gluten sensitivity' genes.
HLA-DQ2 and HLA-DQ8 are the 'celiac' genes.
I have HLA-DQ1 and HLA-DQ8. So one of each.
Unfortunately, Zoe has HLA-DQ2 and HLA-DQ8, both the celiac genes.
Having the genes doesn't guarantee that she will get celiac, but if she gets the right environmental trigger- she is predisposed to get it. To put it another way- you are 99% likely NOT to get it if you don't have these genes (nothing is ever 100%, and there are certainly more than just these 2 genes are work, but these are the only 2 they know about so far). With only HLA-DQ8, you have a small chance of getting it. With only HLA-DQ2 your chance is a lot bigger as this is the gene primarily associated with celiac. If you have both, HLA-DQ2 and HLA-DQ8, you chances are very, very good.
Of course, there's always a chance that it doesn't get triggered. The primary trigger for celiac is gluten. And the treatment for celiac is living gluten free. So this information has confirmed that not eating gluten is the right thing to do. Even if the trigger ends up being an illness or a bad reaction to meds, and she still becomes celiac- At least she'll already be used to not eating gluten so it's not a huge life changer.
It's so strange how sometimes in life you start going down a path that you had no idea how much you really should be going that way. I mean, I had started researching gluten and autoimmune diseases just days before I was diagnosed with PBC. Then I found out how much of a chance Zoe has of also getting this, and decided to take us both completely gluten free- and now the genetic testing comes back that she has the 'celiac genes'. That seems like someone was pushing us that direction for some reason - Call it whatever you want, Guardian Angel, Fate, whatever- It's like it was preparing us to accept this change so that it would be easier. Or whatever, I'm not a philosopher, just saying it is really crazy how it has all worked out.
I was pretty sad after I found out she had these genes. As if worrying about her getting PBC wasn't bad enough, knowing that her risk of celiac is so high is just another worry to add to the stack. (Plus once you have 1 autoimmune disease, it tends to have a domino effect, I've already got 2. I just don't want her quality of life to be affected). But then I started thinking about it- we're actually pretty lucky. To know this stuff when she's only 3?! To get to possibly prevent or lessen something like this for her is a chance few get. So, always looking for the silver lining, this is actually a good thing to have found out already.
I was reading an article recently on genetic testing. They don't know everything yet, but what they do know should be put to good use. And genetics just need a cheek swab, totally non-invasive. So there is a thought circulating the medical industry to run the testing for known diseases (like celiac) on newborns. It can be so beneficial to know in advance if someone will be prone to getting a disease. In some cases they can prevent, in others they will just know to start yearly testing at an early age because early intervention can improve quality of life. Very interesting.
Anyway, that's it for now. Hope everyone is having a great weekend!
Thursday, April 19, 2012
Oh Wow! Great news!
OK, so I had my liver panel done again. Wow! That's all I can say. Ok here's the history so far.
Normal ranges (for reference):
Bilirubin .1-1.3
ALP 30-132
AST 5-35
ALT 7-56
My initial numbers 2/20:
Bilirubin 1.7
ALP 937
AST 235
ALT 389
I was already going toward a gluten free diet due to my lichen sclerosis, but upon finding this out, I immediately went to a true gluten free diet. I was told on 2/21 that I needed an AMA test and I had already known that that test was for PBC and so that day I went strictly gluten free.
I forgot on 3/06 I had my LFTs done again by my Gastro dr. This was only 2 weeks after going true gluten free! So I just got those numbers.
Numbers on 3/06:
Bilirubin (I didn't get this number)
ALP 633 (Over 300 points in 2 weeks BEFORE meds!)
AST 142
ALT 253
Those are all BEFORE I started the Ursodiol! Just changing my diet. OMG! I didn't even realize I had made that much of an impact already!
The next set of numbers is about 6 weeks of meds and 8 weeks of gluten free.
Numbers on 4/16:
Bilirubin 1.0 (NORMAL!)
ALP 194 (OMG! Almost normal! After being over 900!! Amazing)
AST 59
ALT 101
So you can see how I might be excited! My numbers have dropped so significantly it's hard to believe!
This really cements my belief in the diet changes I've made. I know the meds are completely necessary, especially since I'm already stage 2. But maybe, just maybe, with my diet helping so much and with the meds, my liver can keep up with the damage my immune system is causing. At least till my body heals from the previous gluten damage and then I can HOPE that my immune system 'forgets' about the invader and stops attacking my liver! (That's what the plan is anyway, and I have read about this already happening for people for all kinds of auto immune diseases).
So I'm supposed to have blood work done again around June 1st then again around September 1st. Then I'm supposed to go for follow up. I bet it will be good as long as I stay commited to this!
Yay!
Normal ranges (for reference):
Bilirubin .1-1.3
ALP 30-132
AST 5-35
ALT 7-56
My initial numbers 2/20:
Bilirubin 1.7
ALP 937
AST 235
ALT 389
I was already going toward a gluten free diet due to my lichen sclerosis, but upon finding this out, I immediately went to a true gluten free diet. I was told on 2/21 that I needed an AMA test and I had already known that that test was for PBC and so that day I went strictly gluten free.
I forgot on 3/06 I had my LFTs done again by my Gastro dr. This was only 2 weeks after going true gluten free! So I just got those numbers.
Numbers on 3/06:
Bilirubin (I didn't get this number)
ALP 633 (Over 300 points in 2 weeks BEFORE meds!)
AST 142
ALT 253
Those are all BEFORE I started the Ursodiol! Just changing my diet. OMG! I didn't even realize I had made that much of an impact already!
The next set of numbers is about 6 weeks of meds and 8 weeks of gluten free.
Numbers on 4/16:
Bilirubin 1.0 (NORMAL!)
ALP 194 (OMG! Almost normal! After being over 900!! Amazing)
AST 59
ALT 101
So you can see how I might be excited! My numbers have dropped so significantly it's hard to believe!
This really cements my belief in the diet changes I've made. I know the meds are completely necessary, especially since I'm already stage 2. But maybe, just maybe, with my diet helping so much and with the meds, my liver can keep up with the damage my immune system is causing. At least till my body heals from the previous gluten damage and then I can HOPE that my immune system 'forgets' about the invader and stops attacking my liver! (That's what the plan is anyway, and I have read about this already happening for people for all kinds of auto immune diseases).
So I'm supposed to have blood work done again around June 1st then again around September 1st. Then I'm supposed to go for follow up. I bet it will be good as long as I stay commited to this!
Yay!
Thursday, April 12, 2012
PBC and Gluten Sensitivity
Here is an Article talking about PBC and gluten Sensitivity. Mentions that there are more than 200 studies already linking gluten sensitivity and liver disease...
Children and Gluten Videos
Here are 2 good videos about gluten and children.
The First Video is more about what is gluten sensitivity and the [For all those absolutists: Not every child/person has all or any of these symptoms, and not all of these symptoms are exclusively caused by gluten] possible symptoms children can have when exposed (Makes me extra happy Zoe was breastfed, never had infant cereal, mostly fed fruit/veggies! But I think my eating gluten is what maybe caused her colic...And since removing gluten, whenever she does get a good bit, she usually gets diarrhea/very soft stools and she asks me to rub her belly while she tries to go because her tummy hurts...).
The Second Video is about how to help them and others get to be truly gluten free, genetic testing and some of the consequences, etc.
They are kind of long, but if you have time, it's worth a listen.
The First Video is more about what is gluten sensitivity and the [For all those absolutists: Not every child/person has all or any of these symptoms, and not all of these symptoms are exclusively caused by gluten] possible symptoms children can have when exposed (Makes me extra happy Zoe was breastfed, never had infant cereal, mostly fed fruit/veggies! But I think my eating gluten is what maybe caused her colic...And since removing gluten, whenever she does get a good bit, she usually gets diarrhea/very soft stools and she asks me to rub her belly while she tries to go because her tummy hurts...).
The Second Video is about how to help them and others get to be truly gluten free, genetic testing and some of the consequences, etc.
They are kind of long, but if you have time, it's worth a listen.
Tuesday, April 10, 2012
Gluten Sensitivity and Celiac
“Celiac disease and gluten sensitivity are subsets of gluten intolerance"
There is some debate whether a celiac is more likely to contract autoimmune disease than a gluten sensitive patient, but the jury is still out. I can only state that clinically I have seen many patients with autoimmune disease who were gluten sensitive.
http://www.celiaccentral.org/research-news/Celiac-Disease-Research/134/vobid--2264/
http://en.wikipedia.org/wiki/Gluten_sensitivity
There is some debate whether a celiac is more likely to contract autoimmune disease than a gluten sensitive patient, but the jury is still out. I can only state that clinically I have seen many patients with autoimmune disease who were gluten sensitive.
We also know that gluten, in sensitive individuals, extends its negative effects far beyond the gastrointestinal tract. Cellular & Molecular Life Sciences 2005 reported: “celiac disease has also been termed gluten sensitive enteropathy because the small intestine is the main target of injury; however, the clinical manifestations are extremely diverse, suggesting the disorder is in fact a multi-systemic disorder.”
Hepatology Journal 2007 found: “liver blood test abnormalities affect patients with classical celiac disease or may be the sole presentation of atypical celiac disease.” “A gluten free diet leads to normalization of the blood in 75% to 95% of patients with celiac disease, usually within a year of adherence to the diet.” “Even more, celiac disease was found to be associated with an 8-fold increased risk of death from liver cirrhosis.”
http://en.wikipedia.org/wiki/Gluten_sensitivity
Subscribe to:
Posts (Atom)