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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.

Help...gf But Getting Worse
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4 posts in this topic

Hi everyone,

I'm not officially diagnosed; my gastro doesn't think celiac disease as only the anti-gliadin was high, but my enterolab results were very very high so I went gluten free (and casein free) on Saturday.

Already, I am feeling much much clearer in my head (the "fog" has lifted) and my ears have cleared up, but my stools are getting worse. (sorry for the descriptiveness) I didn't really have stool symptoms before, maybe they were a little soft, pale, and floaty, but not a big deal. But now, they are almost like D and this has been in the days since I quit gluten and casein. Does anyone know what's going on? Why would I be getting worse? I would appreciate your stories/advice/theories. Thanks so much.

--Laura in CT

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It sounds like in some ways you're getting better, but the diarrhea of course is not a good sign. That could be a reaction to your change in eating habits, though, which is common. Are you losing weight or feeling worse in other ways? Have you had a colonoscopy? If the diarrhea is a problem for you a colonoscopy and an endoscopy to check for damage to the small intestine is a good idea. Change doctors if you have to, to get this stuff done. I went gluten-free 9 months ago after my diagnosis, and I felt absolutely terrible on this diet for months. I stuck with it, though, and eventually it did get better. The incredible change in my usual eating habits just didn't sit well with my system at first. This could be what's happening to you, but I'd ask the doctor. Perhaps your symptoms are being caused by something else like Colitis or Crohn's, and that's why a positive eating change did help somewhat but not completely. Anytime you change eating habits, your body is going to react, so this may be just temporary!

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are you eating anything as substitutes for gluten-filled foods that could exacerbate the problem? are you taking any different supplements?

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For the first 2-4 weeks I went gluten free, I felt worse than ever. My nutritionist says it was my body detoxifying. I was only eating potatos, rice, carrots and apples. But when I finally started healing, boy did it feel good. Nothing actually hurt. Processed foods made me sick right away again when I added them back in.......even though they say gluten free. I hope you feel better soon so you know you're doing the right thing.

Blessings,

Lily

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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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