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!

It's been a year

So, yesterday made 1 year since I was diagnosed with PBC.  So far so good.  I do have that 'liver pain' sometimes, but all in all I'm doing OK.
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

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

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. 

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!

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!!