Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

High Bilirubin (gilbert's Syndrome) Linked To Celiac? And Other Questions
0

5 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,910
    • Total Posts
      919,605
  • Topics

  • Posts

    • Are M&Ms Gluten Free?
      Olivia....what country are you located in?  I just bought a bag of regular M&M's from the vending machine at work. They are the milk chocolate ones and it is a 1.69 oz. bag.  The allergy warning states: Contains milk and soy. May contain peanuts.  The "best before" date on it is for April of 2017 so this is a recent bag.  
    • New to this gluten-free life
      Getting a diagnosis like celiac an be overwhelming because it's so complex and there's a lot to learn. If you're unhappy with your doctor, switching to a new one and/or getting a second opinion are options. It's really important to find someone you feel comfortable with who listens to your concerns. That being said, as you're preparing for your next appointment, take time to write down any questions that come up as you go about your day beginning to manage your condition and track any symptoms you're experiencing. Did your doctor discuss lifestyle changes and treatment options with you? Here are some examples of things to ask: What tests do I need? What treatment options are available? Should I take nutritional supplements? Are there any dietary restrictions that I need to follow? How will I learn which foods contain gluten? Should I see a dietitian? Can you recommend nutritionists who work with celiac patients? The Celiac Foundation is another resource. Their website has lots of information and resources. There's also the Celiac Support Association – they have local chapters, or the National Foundation for Celiac Awarenes. And check out magazines like Gluten-Free Living, Delight Gluten-Free and Living Without.  
    • Kidney disease question
      Icelandgirl and I often remark, "There's always something [to be worried about]"! Whilst  is obviously important to have all these tests and there is good reason to check them (one reads that very occasionally doctors miss something) it has done my health anxiety absolutely no favours having blood test after blood test!    
    • Celiac Night Vision
      On 4th June I posted on the ehealth vision forum under the title seasonal night vision scotomas, but there were no replies. I have just had my eyes tested by an optometrist. Acuity is 20/25. She did field testing and Topcon tomography and did not find anything alarming for my age. However in dim lighting against a light background I can sometimes see a round slightly greenish area about 20 degrees across with lateral extensions to the blind spots. Shutting the eyes suddenly makes it a light area. The scotomas occur within this area. I can also see those intriguing blue arcs of the retina with both eyes (though they always look violet to me). Trying to identify what causes migraine, scotomas and possible celiac symptoms is notoriously difficult which is why there are no good papers on how to do it. I continue to keep a daily record of foods, symptoms and anything else which seems relevant listing what is being avoided and highlighting possible clues. notme! - we are eating tomatoes and potatoes this year! Good luck to other celiac detectives!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,956
    • Most Online
      1,763

    Newest Member
    Sass
    Joined