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

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/

Is Gluten Intolerance The Cause of Autoimmune Disease

...There has been proof for many years that the intestine is not the only tissue targeted by the immune reaction to gluten...Now, more recent research reveals that perhaps a vast number of autoimmune diseases may also involve an immune response to dietary gluten...And potentially on and on it goes to include many of the 100s of autoimmune diseases afflicting millions of Americans. Can you now see why gluten has such far-reaching effects that damage other systems of the body?

Dr. Alessio Fasano performed a brilliant study on rats that were genetically predisposed to develop type 1 diabetes...This study was the first time that an autoimmune disease was prevented by blocking intestinal permeability...This study opens a new field of investigation into the relationship between the health of the intestine and the basis of many diseases. Imagine if the “unknown trigger” of autoimmune disease turns out to be gluten and its effect of creating a leaky gut!

A study from Italy showed that the longer gluten sensitive people eat gluten, the more likely they are to develop autoimmune diseases. They found that in childhood celiacs, the prevalence of autoimmune disease rose from a baseline of 5% at age 2 to almost 35% by age 20. Imagine if screening of all children for gluten intolerance resulted in reductions of future autoimmune diseases!

...have their children evaluated for gluten intolerance, especially if there is any incidence of autoimmune disease in their family tree...

...we do see some very exciting reversals in autoimmune disease symptoms once a patient has removed gluten from their diet...

http://www.healthnowmedical.com/blog/2011/07/05/is-gluten-intolerance-the-cause-of-autoimmune-disease/

Leaky Gut

 What is the Leaky Gut Syndrome (LGS)?

Leaky gut syndrome is a term often used in complementary or alternative medicine circles and by the lay public that describes a collection of symptoms believed to be due to what medical researchers call increased intestinal permeability or altered intestinal or gut barrier function. This concept is increasingly recognized as one of the most important problems, if not the most important, in the prevention or development of various diseases such as celiac disease, Crohn's disease and various autoimmune disorders. An intact gut barrier is part of the innate immune system defense mechanism that is important for health and prevention of disease. The intestine is lined with a single layer of epithelial cells, called enterocytes in the small bowel and colonocytes in the large bowel or colon. These epithelial cells constitute the intestinal barrier or defensive wall from what enters our body when we eat.

Can gluten cause leaky gut with or without celiac disease?

Chronic gluten exposure has been shown to activate zonulin resulting in increased intestinal permeability (or leaky gut) even in the absence of celiac disease. ...

http://www.thefooddoc.com/leaky_gut

Study Sheds Light On Gluten Sensitivity - WSJ.com

Very interesting article. Like I keep saying- this information is still very new, but it's real!
http://online.wsj.com/article/SB10001424052748704893604576200393522456636.html

Is gliadin really safe for non‐coeliac individuals?

"The data obtained in this pilot study support the hypothesis that gluten elicits its harmful effect, throughout an IL15 innate immune response, on all the individuals. This innate response is found in both patients with and without CD, although the triggering of an adaptive response is CD specific. We propose that somehow patients with CD need to be DQ2 and also have a lower threshold for triggering an adaptive TH1 response. This lower threshold could be mediated by the higher basal levels of immune mediators, like IFNγ mRNA, found in patients with CD, a defect in the CD permeability or even a higher IL15‐sensitive response under the same stimulus, which might be mediated by a higher density of IL15 receptor in patients with CD."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1954879/?tool=pmcentrez

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.