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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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

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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.



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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.

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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

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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.

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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.

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    • When you're looking for answers the negative endoscopy may seem like bad news in a funny way, it did for me when the doctor told me, but really as CL said it's good.  Keep working with your doctors.  From what you've said before gluten could still be the problem.  Now you've eliminated celiac you can try removing it from your diet, but it's important that you do it safely. You don't want to cause a problem while trying to fix one. Most people get a lot of B vitamins in particular from gluten foods. So if you make a change to your diet do it with your mom, ideally involve your doctor or a dietician and keep a diary of your symptoms too, sometimes called a food journal. You may still have found your answer, don't panic and don't lose heart. Best of luck Matt 
    • BoliviaB, DH rash can occur in Celiac's who reindtroduce wheat/gluten after a break from gluten. However I want to go/see that the parasite route has also been exhausted. The fever's (for most Celiac's anyway) are not typically but low grade inflammation is. I had annual bronchitis issues and ear aches that went away after stopping gluten. You did not say if your were a native Bolivian or not but if you are you  probably know about Chagas disease carried by the Kissing Bug. A blood test will confirm that the Chagas parasite's were killed with your AB's round. Though many AB's rounds can be as long as 2 months . . . not just two weeks for complete control. I wonder if you have Chagas (possibly) and it is causing you colon problems.  GI problems can be a sign of advanced Chagas complications. If you are having your blood drawn again it should be (re)checked. In the US (since it is not endemic) as it is in Bolivia people typically find out if they have it (Chagas) by giving blood. Chagas is considered a Neglected Tropical Disease (NTD) in the US but in Bolivia it should be ruled out as a possible cause of your fever(s) and GI problems. https://www.cdc.gov/parasites/chagas/disease.html quoting "a dilated esophagus or colon, leading to difficulties with eating or passing stool" can be a sign of chagas. if you hadn't mentioned parasites in your regimen I might not of mentioned it.  And in the UK if they didn't know your country of origin or your home country they might not of think to ask about it since it is a Neglected Tropical Disease and therefore had no reason to suspect Chagas to test your blood for it. I was only aware of it because it has begun to show up in Texas and CNN run an article about it a couple of years ago. http://www.cnn.com/2015/11/24/health/kissing-bugs-chagas-disease/index.html  If you have an outdoor dog --- dog's can also contract Chagase disease from the bite of the Kissing Bug much like in the US dog's can get heart worm from a mosquito bite. The CDC (the US health agency) says most people are assymptomatic but GI problems can be a severe sign of undiagnosed Chagas in about 30% of the population. quoting again "In people who have suppressed immune systems (for example, due to AIDS or chemotherapy), Chagas disease can reactivate with parasites found in the circulating blood. This occurrence can potentially cause severe disease." . . (NCGS and/or undiagnosed Celiac Disease (my words) could certaintly complicate someone's response to the Chagas parasite). This might be higher in Bolivia. . . and probably is since Chagas is endemic to Bolivia. The good news a blood test can help you find out if undidangosed Celiac or undiagnosed Chagas is causing your problems or if it is a complicated mix of the two. **** this is not medical advice but it explains your fevers' better than Celiac (usuallY) but the rash defiantly could be a DH reaction to gluten. I hope this is helpful. 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God, ETA: Here is the FAQ link from the CDC on Blood Screening for Chagas disease in the US.  https://www.cdc.gov/parasites/chagas/gen_info/screening.html Again I hope this helpful.    
    • Thank you for posting. Your honesty and openness is refreshing. My son is five years old and experiences the same as you, to include hallucinations, insomnia and stereotypies to name a few. His symptoms are all neuro psychological. Have you looked into trying a mild blood pressure med to control the accidental glutening? We were prescribed clonodine. It's not something to take all the time, just if you need to take the anxiety and insomnia levels down. I have only given it to my son during one episode and the first time I gave it to him he said, "finally!" and then fell asleep. He had been suffering from insomnia, anxiety, intrusive and dark thoughts for days. He needed the sleep. (Side note:  a lot of meds are made with lactose so you should always ask for dairy free and of course gluten free when filling a prescription). So my son responds very negatively to the following foods which are considered by some to be cross reactive to gluten.  Rye Barley Spelt Wheat Oats  Buckwheat Sorghum Millet Amaranth Quinoa Corn Rice Potato Hemp Teff Soy Milk (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein and whole milk) Chocolate Yeast Coffee (instant, latte, espresso, imported) Sesame Tapioca (a.k.a. cassava or yucca) Eggs   Our best bet has been to only eat fresh fruits, vegetables, grass fed meat and gluten free nuts. I highly recommend trying an AIP diet.  After a glutening I may give him one or two methylated B12 supplements. Have read studies involving the use of B9 in psychiatric disorders, but haven't tried it. Let me know if you want to chat or have any questions. I've been dealing with this for about two years now. We can probably learn from each other.    P.s. Just discovered recently that he reacts the same way to coconut as he would to gluten. Eliminated and now we're normal again. If you start feeling like you can't climb out of it then look very closely at your diet. Food logs are easier to make if you're eating very limited whole foods. You can slowly add things back. 
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    • That is good news!  No celiac disease!   I would follow your doctor’s advice.  Consider adding in more veggies and fruit into your diet.  You can trial a gluten-free diet now that testing is over.  That might help.   Did they rule anything else out?  I would encourage you to obtain all your lab results and medical records.  It is a very good thing to maintain!  
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