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Elevated Bilirubin Count Warning Sign Of Celiac? (gilbert's Syndrome)


Pegleg84

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Pegleg84 Collaborator

Hello all,

well, I've tried to stop stressing about the possibility of having celiac for a bit, but I just got my most recent blood test results back and my liver bilirubin count is still high. Normals are 2-18, but mine is currently 29. There is no real danger caused by this elevation of bilirubin, but could it possibly a sign or symptom of celiac disease? The reason why I suspect this is because my mother, who was diagnosed with celiac over a year ago, had elevated bilirubin counts since she was my age (early 20's). Our doctor has always said that it was a mild form of a rare condition called Gilbert's sydrome (which when severe can cause jaundice), which is hereditary. Anyway, now that she is on an gluten free diet, my mother's bilirubin counts have gone down more or less to normal, suggesting a link to celiac disease.

now, of course we have mentioned this possibility to our doctor and he thinks it's coincidence (though he's not overly informed about celiac), but it is yet another sign that I could be the next on the list of family members with celiac.

If anyone has any information about this possible link, I would love to know.

For those who are bound to ask. Both my mother and my only sister both have the disease. It's on both my mother and father's side of the family, I have so far tested negative in 2 successive IgA,IgG blood tests, but am nevertheless suffering increasing gastrointestrinal problems, including stomach pains, bloating, hemrhoids (fun fun), and all kinds of other possibly related stuff.

as always, any help and information is greatly appreciated.


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mimommy Contributor
Hello all,

well, I've tried to stop stressing about the possibility of having celiac for a bit, but I just got my most recent blood test results back and my liver bilirubin count is still high. Normals are 2-18, but mine is currently 29. There is no real danger caused by this elevation of bilirubin, but could it possibly a sign or symptom of celiac disease? The reason why I suspect this is because my mother, who was diagnosed with celiac over a year ago, had elevated bilirubin counts since she was my age (early 20's). Our doctor has always said that it was a mild form of a rare condition called Gilbert's sydrome (which when severe can cause jaundice), which is hereditary. Anyway, now that she is on an gluten free diet, my mother's bilirubin counts have gone down more or less to normal, suggesting a link to celiac disease.

now, of course we have mentioned this possibility to our doctor and he thinks it's coincidence (though he's not overly informed about celiac), but it is yet another sign that I could be the next on the list of family members with celiac.

If anyone has any information about this possible link, I would love to know.

For those who are bound to ask. Both my mother and my only sister both have the disease. It's on both my mother and father's side of the family, I have so far tested negative in 2 successive IgA,IgG blood tests, but am nevertheless suffering increasing gastrointestrinal problems, including stomach pains, bloating, hemrhoids (fun fun), and all kinds of other possibly related stuff.

as always, any help and information is greatly appreciated.

Hello. I just wanted to say that my 8 year old daughter's liver enzymes were drastically elevated prior to diagnosis (total bilirubin 1.1 w/ o.o-o.7 range, ALT 715 w/ 24-49 range, AST 303 w/ 15-37 range). My child was negative for all hepatitis screenings. All numbers have returned to normal with gluten free diet. Below is a link to read over suggesting the celiac/liver disease connection--scroll down to the pdf page for hepatitis. I call celiac the "Equal Opportunity Destroyer".

Open Original Shared Link

Gen Rookie
Hello all,

well, I've tried to stop stressing about the possibility of having celiac for a bit, but I just got my most recent blood test results back and my liver bilirubin count is still high. Normals are 2-18, but mine is currently 29. There is no real danger caused by this elevation of bilirubin, but could it possibly a sign or symptom of celiac disease? The reason why I suspect this is because my mother, who was diagnosed with celiac over a year ago, had elevated bilirubin counts since she was my age (early 20's). Our doctor has always said that it was a mild form of a rare condition called Gilbert's sydrome (which when severe can cause jaundice), which is hereditary. Anyway, now that she is on an gluten free diet, my mother's bilirubin counts have gone down more or less to normal, suggesting a link to celiac disease.

now, of course we have mentioned this possibility to our doctor and he thinks it's coincidence (though he's not overly informed about celiac), but it is yet another sign that I could be the next on the list of family members with celiac.

If anyone has any information about this possible link, I would love to know.

For those who are bound to ask. Both my mother and my only sister both have the disease. It's on both my mother and father's side of the family, I have so far tested negative in 2 successive IgA,IgG blood tests, but am nevertheless suffering increasing gastrointestrinal problems, including stomach pains, bloating, hemrhoids (fun fun), and all kinds of other possibly related stuff.

as always, any help and information is greatly appreciated.

I am still getting used to this whole glutten thing so I can't advise you too much on that. That being said elavated billirubin levels can be a problem. Having been through that with my mother. There is a little known probable autoimune disease called Primary Billalilary Chirrosis (PBC). It too is like celiacs in that it is often undiagnosed or misdiagosed for years. It took my mom about 15 years to get a definative diagosis. There also appears to be a link between celiac's and even thyroid disease. Oh and one of the symtoms is incessant itching. You need to see a hepatoligist who knows something about this disease to rule it out.

Please don't let the word cirrosis scare you is isn't caused by drinking or exteral factors. It's an autoimune response to something unknown.

Good luck.

eringopaint Newbie

I have had a high bilirubin count for years, and doctors always ignored it since it wasn't dangerously high. I am due for blood test soon to see if my vitamin D level has returned to normal (it was very low) so I am anxious to see what the bilirubin will look like now that I am gluten-free.

I went gluten free last April but it took about 3 months to start to see real positive changes... it is well worth the effort. really. I pretty much blame all my medical problems on celiac - as I was undiagnosed for 30 yrs and now am seeing so many problems disappear.

Yes, thyroid disease is linked to celiac - have that too.

good luck.

erin

  • 3 weeks later...
pmn Newbie

If any of you find out your results and any possible connexion between the two I would really like to know! I've been experiencing a slew of Coeliac-like symptoms for a couple of years now with no other explanation, and I have also been diagnosed with Gilbert's (my last 2 rounds of blood work showed levels in the 40s and 50s). I had a requisition for IgA IgG blood tests in November, but unfortunately moved to the other side of the country before I could get it done, and haven't followed up with a doctor since moving.

  • 5 weeks later...
Voss Newbie

I have celiac and are intolerant to salicylates, histamine, etc.

I found this research yesterday in my own quest for answers as how this is all related.

While googling more I also found this topic, so I registered to post this:

Gilbert's syndrome is caused by approximately 70%-75% reduced glucuronidation activity of the enzyme Uridine-diphosphate-glucuronosyltransferase isoform 1A1 (UGT1A1).

Open Original Shared Link

Open Original Shared Link

Deficient UDP-glucuronosyltransferase detoxification enzyme activity in the small intestinal mucosa of patients with coeliac disease.

Department of Gastroenterology, Radboud University Medical Center Nijmegen, Nijmegen, the Netherlands

Background Small intestinal malignancies in humans are rare; however, patients with coeliac disease have a relatively high risk for such tumours. Intestinal UDP-glucuronosyltransferases are phase II drug metabolism enzymes also involved in the detoxification of ingested toxins and carcinogens. As many toxins and carcinogens are ingested via food, the human gastrointestinal tract not only has an important role in the uptake of essential nutrients, but also acts as a first barrier against such harmful constituents of the food. Therefore, the gastrointestinal mucosa contains high levels of detoxification enzymes such as cytochromes-P450, glutathione S-transferases and UDP-glucuronosyltransferases.

Aim To compare the UDP-glucuronosyltransferase detoxification capacity in small intestinal mucosa of patients with coeliac disease vs. that in normal controls.

Methods We assessed UDP-glucuronosyltransferase enzyme activities towards 4-methylumbelliferone in small intestinal biopsies of patients with coeliac disease (n = 22) and age- and sex-matched controls (n = 27).

Results Small intestinal UDP-glucuronosyltransferase enzyme activity in controls was significantly higher than in patients with coeliac disease: 0.55

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      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
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      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
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      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
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