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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New Drug For Celiac Disease? Would You Take It?
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10 posts in this topic

When we were at the GI for a follow-up visit this week, there were signs up asking for adult volunteers for Phase III clinical trials for a new drug that will soon be on the market for patients with celiac disease. The drug will supposedly break down gluten and protect patients from damage. I have a pretty good understanding of the drug trial processes and steps, and it will be a very long time (10+ years) before a pediatric version becomes available, assuming the adult form proves to be safe.

I'm interested in knowing if you would take such a drug? Are any of you entering the phase III clinical trials? I would like to hear updates as people begin taking the drug!

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No. These are for formally diagnosed celiacs. They don't acknowledge gluten intolerance. Secondly, it's insane to ask people who don't have problems with willingly complying with a gluten free diet, to further risk their health and continue to create severe auto-immune damage, because a trial would mean that some testers would be getting a placebo, not the drug, and secondly, there is no guarantee the drug would work. I also think that the drug is going to encourage bad behaviors, because of human nature, there are going to be a lot of people who are deliberately then eating gluten anyway, and expecting this drug to "protect" them, just as there are people who just eat way too much junk and fast food in any other category, then expect various statins and diet weight loss pills and hypertensive meds and diabetes meds to "protect" them from the consequences.

Trying to use drugs to make up for the lack of diagnostics and contaminated food supply is doing it backwards, in my opinion.

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I would consider it as a safety net when dining out or at social gatherings. I would not knowingly ingest gluten even with a drug.

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After reading through these blogs for the last week, it seems to me that many people have ongoing issues that the gluten-free diet is not fully addressing. If the pill reduced zonulin production or otherwise aided in healing the leaky gut, I would be quite tempted to sign myself up as a guinea pig. Of course, it's not my choice since I'm not the one who is sick, but I will definitely be watching for research and developments.

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I would absolutely try a drug. I would love to be able to eat whatever I wanted again. I am a foodie, and this restrictive life long diet sucks. As I understand it, the IL-15 drug trials were fast tracked due to the sheer volume of people affected by celiac. I am hopefull they pass clinical trials, and is fast tracked to fda approval. If so, I will be travelling to the US to get some! I would give anything for a croissant... ;)

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I would! Only because of my lifestyle. When I'm home in my own country eating gluten isn't necessary. When I'm overseas, it's sometimes unavoidable. And only because I have other medical conditions that further restrict my diet to a paleo type diet (but no fruit for me). When I'm in a 3rd world country and all that's available in a village are some pastries filled with meat...that pill would help. Otherwise I eat from my "prohibitive" meat sources I've smuggled over the border. Sometimes my stash gets confiscated, but I always risk it because I've been caught too many times in small villages and no food source. So, bring it on!!

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I might try it if trials turned out alright for occasional eating out for celebrations (eg: christmas dinner CC...had to avoid it this year) or going on a trip. But I'm pretty skeptical about many drugs not just for efficacy but side-effects too. Particularly with a drug like this I'd be concerned it'd be geared to break down gliadin only or something and so wouldn't work for barley or oats. And I'm also off dairy and and many others have issues with corn and soy and then there's some foods that are supposed to be gluten free but people still react to as if they had gluten. I can't imagine this drug being anywhere near good enough for me to feel safe while on it.

If there's drugs out there that are designed to stop the immune reaction that would also have it's own issues, like the fact that my peripheral neuropathy isn't apparently caused by the same type of T cells that damaged my intestines and of course if a drug were more general in reducing an immune reaction there's always the worry about other infections.

I don't want to be in trials.

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I would take a proven drug in a heart beat... but I would not participate in a drug test.

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I agree with Cavernio. Drugs have side-effects and some are not identified until they've been on the market for a while. That and I am so sensitive to medications, I think being on a gluten-free diet would be a healthier, more natural approach until the medication is proven safe long-term. It's great though that companies are working on a solution though and I really hope it turns out well!

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I agree with the safety net option for nights out or on vacation but not for everyday, not too big on taking pills.

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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