Several studies identifying link for PBC and Celiac

Celiac and Other Autimmune

"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.

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!

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!

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.

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.

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://www.celiaccentral.org/research-news/Celiac-Disease-Research/134/vobid--2264/

http://en.wikipedia.org/wiki/Gluten_sensitivity

Prevalent Role of Gluten Sensitivity and PBC

57% of patients with acute liver failure have anti-transglutaminase antibodies suggesting a role of gluten sensitivity in primary biliary cirrhosis, and primary biliary cirrhosis is considerably more common in gluten sensitive enteropathy than the normal population


I know it's just wikipedia, just saying it's becoming more common knowledge!
http://en.wikipedia.org/wiki/Primary_biliary_cirrhosis