High Bilirubin (gilbert's Syndrome) Linked To Celiac? And Other Questions

[Pegleg84]

Hello everyone,

I've posted here a few times, as I have been sitting on the fence as to weather I could have celiac or not. A bit of history, for those who will ask: have been suffering mild GI problems for a few years, as well as anemia-like symptoms, depression, etc. In the past year or so these have gotten worse and it has to be either a: increase in food intolerances, like garlic, onions, spicy food, etc; b. celiac; c. something else crazy. I'm only 25.

My mother and sister both have the disease, as well as one aunt on my mom's side, and and aunt and uncle on my father's side. My sister's blood test results were negative, but her biopsy was positive. I have had bloodwork for celiac done twice now and it's come back negative, but I'm still not ruling it out.

In my most recent bloodwork, my liver bilirubin count was up, and was still up when re-tested. Normal's are 2-18. Mine is 29. It is likely the symptom of a more or less benign condition called Gilbert's syndrome, which my mom had for years and years (since she was my age). Now that she's on the gluten free diet, her count had gone back more or less to normal.

I'm wondering if anyone else has heard of a connection between high bilirubin and celiac? Could this be a red flag?

Also, I am suffering GI problems, developing food intolerances, increased irritability and fatigue, constipation, hemhroids, gas, etc.

I am trying to decide whether to a: get scoped asap and see if there is any sign of celiac damage; or go on the gluten-free diet, see if I'm any better, and then do the gluten challenge to confirm? Or I could try eliminating anything else that could be causing problems (spices, etc)?

Anyway, I mostly want to know about the biliruben thing, but any other advice would be of great help.

thanks

Peggy

[ravenwoodglass]

Celiac disease can impact the liver. There are a number of us who have had those issues resolve as your Mom did. You do sound like you could be one of us. The choice to get scoped is really a personal one. Some are not able to stick to the diet without a doctors confirming with a scope. However there is a false negative risk with the scope as with the blood tests and you would need to try the diet after it was done.

It can really complicate matters when the blood tests are negative. By the way did you see the actual test results or were you just told they were negative? There are times when a doctor will see a reading that is a low positive and consider it a negative. Always get actual copies of the lab results.

There are quite a few folks here who have just done the diet, seen good resolution of issues and just gone with it.

[Pegleg84]

thanks,

it's good to know that others have had the same problem.

I'm currently beginning an attempted week without gluten just to see if it makes any difference whatsoever (I'm getting tired of feeling like crap after I eat practically anything), and the next time I see my doctor will demand to a: actually see my blood results and find out what the normals are and b: see about getting an endoscopy done asap. It's probably better to get it done, positive or not, and know that even if I could have the disease, I'd know if damage has been caused yet or not. I'm still young, therefore if I do have celiac, I can prevent all kinds of future problems by going on the diet now.

so, I'll keep you all posted, and see if I can cut down on daily stomach pains this week

[Brainfog]

That is very interesting about the Gilberts syndrome. I have the same syndrome and have just been tested again for celiac. The test results came back neg, but did not see actual test results. I have not gone 100% to the gluten free diet yet but am starting to get more courage. The problem is my lifestyle needs to be changed dramatically.

[jerseyangel]

There is a definate connection for me between my liver and the Celiac. My GI agrees.

Before I was diagnosed, my bilirubin was elevated, and within a few months of going gluten-free, it went back to normal.

Last summer, I was ill quite a bit, and was having trouble putting my finger on exactly what was wrong. Turns out, I had been eating a product that was being made on shared lines with wheat. (the manufacturing practice had changed, it used to be fine)

Co-incidently, at this time my routine bloodwork came back with elevated liver enzymes. A repeat test a week later showed the levels had risen and my bilirubin was up again. I had a battery of tests--ultrasound, endoscopy, liver panels.

Everything came back normal, as did some repeat bloodwork. My GI feels the whole episode was "sprue related".

Some of us just have livers that react to gluten.