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!

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!

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!

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.

	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!

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.

PBC Familial Clusters Involve Mother-Daughter Pairs

Whether coeliac disease leads to severe liver disease and failure is the subject of ongoing debate. Patients with chronic liver disease have been found to have a higher prevalence of coeliac disease than the general population. A study of 327 patients with 'chronic liver disease' from Sweden found the prevalence of coeliac disease was increased at least 15-fold. Patients with severe liver disease were investigated in a study from Finland. In those considered for liver transplant for gross liver disease, coeliac disease was found in four and on a gluten-free diet a dramatic response ensued in the three compliant patients and in the fourth, a poorly compliant patient, a partial response followed. A related study of 185 Finnish patients who underwent liver transplantation found eight had adult coeliac disease; four to 10 times the expected prevalence. Seven of the eight adult coeliac disease patients were non-compliant long term. The liver biopsies showed a number of pathologies; autoimmune hepatitis (one), primary biliary cirrhosis (two), steatosis, primary biliary cirrhosis (one), primary sclerosing cholangitis (one), congenital liver fibrosis (one), chronic active hepatitis (one), secondary sclerosing cholangitis following cholecystectomy (one).

There are, moreover, numerous reports of a link to primary biliary cirrhosis with evidence of improvement on a gluten-free diet, leading to the recommendation that all patients with primary biliary cirrhosis be screened for coeliac disease.

There is evidence for links between coeliac disease, often silent, and a wide variety of liver diseases particularly a mild silent hepatitis and primary biliary cirrhosis.

http://www.medscape.com/viewarticle/500797_3

And if anyone doubts my worry for Zoe:

...data suggest that first-degree relatives of PBC patients have an increased risk of developing the disease. Most often, these familial clusters involve mother-daughter pairs, which is consistent with the female preponderance of the disease...

I am justified to worry!

http://www.hindawi.com/journals/ad/2011/189585/

Some Pet Peeves

So I've been reading various PBC support group sites and there are a few things that bug me.  But before that, I do want to preface this with the fact that overall I think these groups are awesome! And I am so thankful for having this disease in this day in age.  I feel like people that had this before the internet/infomation age were probably very misinformed and just felt totally lost...

OK, my pet peeves.  First, it's sort of a mixed one- MOST of the people on these boards are over 50 women.  There are some exceptions, but by and large, that's what's there.  I feel kind of out of place.  Like why the heck do I have this thing?!?!?! I'm too young! But it's mixed, because the few ladies I've talked to, make me feel better - like a mom or grandma looking out for you, so that's nice.

My other pet peeve is a little slogan most sites tend to have.  Something like "PBC doesn't have to be a death sentence".  So, ok.  Yes it MAY not kill you, but just because it doesn't directly kill you doesn't mean your quality of life is worth a darn.  In one breath they say it may not kill you and in the next they talk about all the aches, pains and disabilities caused by PBC.  So many people end up going on disability due to the extreme fatigue, joint pain, liver pain, etc...NOT SOMETHING I'M LOOKING FORWARD TO...And MOST of them all end up developing multiple autoimmune diseases.  Like PBC is the gateway autoimmune disease! :(

And then a post I read keeps playing over and over in my head - "My mom just died of PBC and now I've been diagnosed with it..." UGH! I don't want this to be my and Zoe's story!!!!!!

But I'm doing everything I can to prevent for Zoe and to heal me!  I WILL!!! ;) I will keep telling myself: I will beat this! I will have a long and happy life with my kid! I will help her to stay healthy through lifestyle and nutrition choices!  I WILL!!

A little update

So, I was thinking I haven't done an update in a while...

First, I don't know if it's just being a mom (Zoe has had a couple nights of not wanting to sleep well), or if it's the PBC, but I am TIRED! Dog tired.  Like my ears start ringing I'm trying so hard to stay coherent tired.  Reminds me of early pregnancy! Ugh.  And also, just like early pregnancy, I have been pretty much constantly nauseous the last week or so.  Last Thursday I was actually sick all night, but even besides that I just have this background noise of mild, but annoying nausea.  I find if I (just like pregnancy) eat a little at a time at nearly a constant drip, that helps a little.  But that's hard to keep up with.  I hope this isn't my life now - comatose tired and on the verge of throwing up all the time?? Doesn't sound fun.

AND I am not super 'itchy' yet (a common thing with PBC), but I am 'prickly' all over.  Hard to describe but my skin feels like it's SUPER dry or 'prickly' or something and about to itch all the time, but not itchy yet, with occasional true itchiness?? Hard to say but it's my hands, arms, feet, face, neck, belly, chest....Almost all over. 

AND my eyes are having issues.  Like I'm blinking imaginary 'goop' out of them.  There's nothing there, but it sometimes takes a blink or two to see things clearly.  May just be due to the being tired part, who knows!

I'll go in a week or so to get my Liver Function Tests done again to see if the Ursodiol is helping lower my numbers at all.  Hoping we see some improvement!

Think that's about all for now.

Not the best news but could be worse I guess

It could always be worse...I just gotta remember that.

So I found out yesterday that I am in Stage 2 of Primary Biliary Cirrhosis...Ugh.  There are 4 stages, I was hoping for stage 1 (Or Zero- That would mean no damage at all yet, but I knew that'd be asking for too much...).

• Stage one: Inflammation and/or abnormal connective tissue confined to the portal areas
• Stage two: Inflammation and/or fibrosis confined to portal and periportal areas
• Stage three: Bridging fibrosis
• Stage four: Cirrhosis

{Warning: Medical jargon coming!}

Histologic stage — PBC is classified histologically into four stages.

As noted above, the natural history of PBC involves histologic progression along these stages, although treatment with UDCA may slow disease progression.

{Pre-UDCA [The Medicine I take]}
In a study involving 916 biopsy specimens from 222 patients followed in the pre-UDCA era, cirrhosis developed within four years in 31 and 50 percent who presented initially with stage I or II disease, respectively
The presence of cirrhosis (stage IV), is associated with a worse prognosis and identifies a group of patients at risk for development of complications related to cirrhosis including variceal bleeding and development of hepatocellular carcinoma. In a study of 256 patients seen in the pre-UDCA era, 31 percent developed esophageal varices during a median of 5.6 years of follow-up. One- and three-year survival rates were 83 and 59 percent, respectively, after the development of varices.

{With UDCA}
In another study, the presence of ductopenia {"refers to the associated reduction in the number of intrahepatic bile ducts, a process that ultimately leads to cholestasis"[bile not flowing and destroying liver]}on a baseline liver biopsy predicted histologic progression despite UDCA


In a trial of 180 patients at one medical center, UDCA led to a significant decrease in the plasma levels of aminotransferases, alkaline phosphatase, and bilirubin. Although there were also fewer deaths in the treatment arm, there was no improvement in fatigue, pruritus, liver histology, or referral for liver transplantation. In a follow-up report in which treatment had been continued for a total of three years, UDCA was associated with a significant reduction in the risk of death and need for transplantation

Similar findings were noted in a multicenter Canadian study of 222 patients. The active therapy group had lower plasma levels of the aminotransferases, alkaline phosphatase, bilirubin, IgM, and cholesterol. Fatigue, pruritus, and the rates of liver transplantation and death were unchanged. There was, however, a beneficial effect on liver histology as manifested by decreased progression of periportal hepatocellular ballooning and bile duct loss.

_________________________________________

{Random interesting tidbit I found.  Sucks it's still coming back to bite me after 4 years quit!}

Cigarette smoking — An association between PBC and cigarette smoking has been suggested in epidemiologic studies. At least two studies also suggested that cigarette smoking is associated with more advanced fibrosis stage. In one of the studies, never-smokers were significantly less likely to have advanced fibrosis (METAVIR fibrosis score of 3 or 4) than patients who had smoked in the past or were current smokers (16 versus 33 percent). For each pack-year increase in smoking, there was a 5 percent increase in the likelihood of advanced fibrosis.

_______________________________________



So Anyway, what now?  Now I get more tests! Yay! I have to get blood work drawn in 2 weeks, 3 months and 6 months.  Then see the doctor again.  Hopefully we'll see a downward trend of the numbers and can assume the meds (and diet changes) are helping.  Depending on how it's going, at some point I'll get another liver biopsy to see what stage I'm in then. 

My hope is that the meds slow down the progression and my diet changes help to start sealing my gut and EVENTUALLY (I'm talking several years here), I MIGHT see some reversal of this.  And then after even more time, maybe I'll actually beat this disease.  I mean I know it's supposedly 'incurable', but I have already met people that have cured their Auto Immune disease and read about lots more by doing what I'm doing.  So my hopes are high. 

I'm just going to stay on top of this and see where it goes.


________________________________________

Now I also know to stress even more to Zoe to not smoke (which of course I would already, but here's even another reason) and to eat right.  I really don't want my little girl to get this ("familial clustering of autoimmunity has long been recognized"  "Inheriting certain genes can make it more likely to get an autoimmune disease. But a combination of genes and other factors may trigger the disease to start"). And it's not just PBC I have to worry about- "Children {and anyone} with one autoimmune disease tend to run a higher risk of developing another"- Which is what has happened to me- I got lichen sclerosis first (AI disease) and now PBC...What next??


Heredity: A child inherits certain genes from her parents that make her susceptible to a particular disease.

Environmental factors: The disease doesn’t actually reveal itself until it’s “triggered” by something.

Hormonal factors: Given that many autoimmune diseases tend to affect adolescent girls and young women, the presence or amount of certain naturally occurring hormones in the body may also play a role in when these illnesses come to the fore.

So this is how it could have happened with me:
I am predisposed to get an AI; I eat Gluten all my life; I cause holes in the gut and gluten travels around my body; My immune system attacks the Gluten; Then I get my Sphincter of Oddi Dysfunction attacks; That 'triggered' my immune system some how to get confused and start attacking my body giving me LS and PBC

[" When the immune system attacks the gluten protein it can confuse other bodily proteins for gluten due to their similar molecular structure. The term used to describe this phenomenon is “cross-reactivity”.  This cross reactivity is the cause of the immune system attacking “self”. It believes it’s attacking a toxin, in this case gluten. In some cases the trigger to attack self can be an infection"]

Of course, there's no way to know if I've had the PBC before the LS and just didn't know about it - the LS just makes itself KNOWN!  Maybe it was the time I tried the Depo Shots that triggered it, or the hormonal changes from quitting smoking or being pregnant, or the stress of a kindey stone or gall stone, or that really high fever I had that one time- Just making a point, that there's really no way to determine the 'trigger', could be anything, which is why it's so important for me to try to prevent the leaky gut in the first place for Zoe!


Ugh.  Just sucks to know I have probably passed the genes on to Zoe to develop AI disease(s). 

Welcome to the world! You're beautiful! Smart! Funny! And, oh yea, here's a little something extra...

Great job mommy!


________________________________

Sources:
UpToDate.com Unfortuantely, my trial is almost over! :(
ChildrensHospital.org
WomensHealth.gov
ncbi.nlm.nih.gov

Some videos concerning gluten and our health

So there are tons of things to find that will talk about gluten and how it negatively impacts our health.  I find more stuff all the time.

Here's a different mode.  Instead of giving more articles to read (which I will soon anyway :).  Here are some videos to watch/listen to.  Good info...I'm sure I'll find more soon.  They are all over the place. 


Video 1
Video 2
Video 3

A TED MED Presentation

TGIF

Thank Goodness it's Friday! Seriously, I'm just tired this week.  I've had a couple nights of bad sleep, plus a couple of nights that I didn't get to bed on time, plus the liver biopsy- adds up to a tired momma!

This weekend Zoe and I are going to Rylee's 1st birthday! We'll get to see family that we haven't seen in a while.  That will be super fun. But then we'll have to come back early Sunday so I can be sure to have baking, etc done so Zoe has all her replacement food for school.  I already made fig balls last night, so she can have those during the week for a snack, but I'll make applesauce/carrot muffins as well and maybe a loaf of bread if time permits.  So far she's been really liking her gluten free food.  This morning she asked for a gluten free bar for us to share.  Such a cute and smart kid- just when you think she's not paying attention! Honestly, before all this she really didn't have much to do with bread or most things that contain gluten- but now she's loving her gluten free muffin and waffles and such.  And the few things she liked that had gluten I've found ways to make it myself or a good substitute and she's happy.  Like we already talked about the birthday cake at Rylee's party will not be 'safe' for our body.  So instead we are bringing our homemade marshmallows and fig balls for our treats.  She was hopping around excited about that!  So, yea, I think she will fair just fine.

Monday is my appointment with the thyroid surgeon.  I guess it's just a meeting and then I have to go back for the actual biopsy?  I don't know.  He's supposed to get all my records in advance, so maybe he'll do the biopsy at the same time.  If it's like the other thyroid biopsies I've had, there's not much to it.  Just numb the throat and jab it a few times with an open needle (just fills it up with thyroid tissue).  uncomfortable, but not a huge deal and done in a minute.  So...Hoping it's all done at once.  Would be nice to reduce the time off from work I'm taking.  I REALLY don't want to lose this job!

Then Wednesday is my follow up with Dr Sperling (gastro).  I will find out what stage I'm in with the PBC.  Hoping for stage 1!!!! We'll see.  And HOPEFULLY I find out what else is going on.  Not that I want something else to be there, but, given my numbers, there IS something else and I am just about sick of tests! So I'm really hoping the biospy gave them enough information to say what else it is...

Think that's it for the Friday update. :) Hope everyone has a great weekend!

Tomorrow is my liver biopsy

Well, tomorrow is the day.  Fun stuff.  My dad is coming in to town drive me home from there since I guess I'll be loopy :)

Life is kind of crazy right now.

I have had so many appointments, and am still so new at work- I really hope it's not looking bad for me.  I mean they are nice about it all, but I just hope this isn't messing up things for me for the long haul. I could see myself staying here a while if they'll have me!

I finished my last research paper for the semester on Saturday and I already got my grade- an A! So I should for sure have an A for the semester! Yay!

And Zoe stayed the night away from me for the first time EVER, since conception! It was stressful for me, but I hear she did just fine.  That's good to hear.  I think I'm more sad about it than I should be.  Just missing the way things were.  She told me she's forgetting how we used to spend all our days together.
:( Makes me sad to think all the time I devoted to her won't even be a memory for her.  But still worth it for me.  I think it'll make a difference in her character- even if she doesn't remember it.  Hopefully I can still be a good enough mommy, in the few hours a week that I get, that she remembers that...

Just taking one day at a time...

Had my CT scan today

First of all. That barium stuff is gross. I had to drink THREE doses this morning! Yuck. Talk about nauseating. Plus I had to get the contrast in an IV. Fun. Should have results in a day or two.
This whole day has just been crazy. Zoe got sick on the drive in. All. Over. Her. Carseat. Again. Ugh. So I cleaned her up and brought her in the appt with me. Then Tom came and got her. They're hanging out together today. Tom also took the carseat for me. Gonna just trash it. She puked all over it a few weeks ago. I sprayed and washed it as best I can, but the cloth doesn't remove so now after 2 episodes I guess it's just time for a new one.
It's a big decision tho, so I'm having trouble figuring out which one to get. I want one that goes as high as possible on weight with the harness. The traffic in Austin is scary. I want her well protected for as long as possible. I'll probably end up going with a Britax. They are expensive, but I think the material removes on all and is machine washable. And they have some of the highest weights with the harness. So now just where to find a good one in Austin. I see places on line to order, but I need one today!

It's a never ending list with me...

Some statistics and information I gathered

I guess I just can't get too much information...Not so sure that's a good thing.

Here are some random tidbits about PBC:

The prevalence of PBC in families with one affected member is estimated to be 1000 times greater than that in the general population. The disease primarily affects women.  {So think I'm worried about my daughter? Hell yea...}


The average age of patients undergoing liver transplantation for PBC is in the range of 53 to 55 years (mean age of diagnosis is 39).

{The part about "debilitating bone fractures" sounds fun?!}
In addition to considering the MELD score and Mayo model, we suggest that patients with PBC be referred for transplantation evaluation if one or more of the following is present:
•The plasma bilirubin concentration is greater than 5 mg/dL and is increasing
•The serum albumin concentration is below 2.8 g/dL (28 g/L) and is decreasing
•Signs of decompensation or portal hypertension develop, such as ascites, variceal bleeding, coagulopathy malnutrition, or encephalopathy
•The patient has intractable pruritus
•The patient has recurrent, debilitating, nontraumatic bone fractures


{Oh goody, liver transplant doesn't even fix it anyway!}
Recurrence of PBC in the transplanted liver — It is now generally accepted that PBC can recur following liver transplantation.
In a report of 421 patients from Pittsburgh, PA, recurrent PBC was observed in 8 percent of patients after five years, and 22 percent after 10 years [11]. Higher rates were described in a series of 400 patients from Birmingham, England, where recurrence was observed in 18 percent at five years and 30 percent at 10 years [9]. A later report from the same group involving 485 patients found a recurrence rate of 23 percent during a median follow-up of 79 months.


Primary biliary cirrhosis remains one of the top five indications for liver transplantation in the USA. Survival rates of patients and grafts after liver transplantation are reported to approach 92% and 85% at 1-year and 5-year intervals, respectively.137 Fatigue and pruritus usually resolve, with metabolic bone disease improving after transient worsening in the first 6–12 months after liver
transplantation.

{Thankfully I'm asymptomatic right now, so I guess I have 16 years?! Nice to know when my timer will ding...}
Generally, the median survival duration from the time of diagnosis is 7.5 years for patients who are symptomatic and 16 years for patients who are asymptomatic.

{I like how it says 'delays' ugh}
Reports suggest that UDCA delays the need for transplantation or delays death.

{FINALLY, something that actually sounds positive! Lets hope I'm responsive to the UDCA treatment!!!}
Patients who achieve biochemical response to UDCA after 1 year of treatment reportedly have a similar survival rate to the matched control population, and this observation might be used to identify the population of nonresponders who will require alternative or additional treatments

{Or not...}
Liver transplantation appears to be the only life-saving procedure.
15-20 mg/kg of UDCA (ursodiol) provided best out come.

{My sources, along with a trial UpToDate membership...}
http://emedicine.medscape.com/article/171117-overview
http://www.med.upenn.edu/gastro/documents/LancetPBC.pdf



So honestly, I'm being a little sarcastic with my comments.  I mean, all the data does sound super bleak, BUT I've also been doing a lot of research on autoimmune diseases as a whole for a while now because I was trying to control my lichen sclerosis...SO, I've found that there is A LOT of evidence pointing toward grains (specifically the protein in grains known as gluten) causing 'leaky gut' which is then associated with causing all the auto immune diseases.  I will post PLENTY of references on that as time goes on.  But for now, I just wanted to say I'm not feeling nearly as negative as my comments sound.  I actually have very good hopes for my grain free diet and increased vitamins to help me cure or at the very least, slow down progression.  That along with my UDCA treatment will hopefully give me a normal life...

Looking forward to my appointment tomorrow!  Need to find out where I stand and get started on the treatment!  I have a kid that needs me to stick around a good long while! :)

Waiting is so hard to do

Most of the weekend I had my niece, Gia, so I didn't have to think much about what's going on. But since she left I've been left up to my own devices. I'm just trying to stay busy. Zoe and I planted some more seeds in the garden. We are growing a good variety of fruits and veggies this year. Zoe is already looking forward to the harvest :)


So now I'll just try to focus on getting ready for the week. My parents are coming in for the specialist appointment on Tuesday. So we should have a good couple of days hanging out. 


Oh and joy, because I don't have enough to think about and deal with- my fairly new fridge now leaking water in the floor. So I'll need to call for warranty work. I'm sure that'll be another huge pain to get fixed. Ugh. 


At least I have so many things going on, I can't dwell on any one particular suck item of my life. 


Instead I will focus on Zoe and work and school. And try to forget the rest...good luck to me! LOL