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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.

Scared Of What Colonoscopy Might Find
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5 posts in this topic

I'm having a colonoscopy on Friday, and I'm getting worried that something else is really wrong, in addition to the gluten problem. I'm not worried about the procedure itself, just the results. My previous doctors never referred me to a GI when the daily diarrhea, insomnia, and SI joint pain started as a teenager (22 years ago), telling me that this was just "normal for me" and that occasional blood in my stool wasn't a cause for concern as long as it was bright red, because it was probably just irritation from toilet paper and would only be a problem if I became anemic. I regret not pressing harder for a colonoscopy when I had my endoscopy last year, but I was so glad to finally have a doctor who agreed to celiac testing that I didn't want to push my luck, and she said it wasn't necessary at the time because I'd already had such a good response to a gluten-free diet. Then my celiac tests were negative (after an awful gluten challenge that might not have been long enough), and both of us were very surprised. But the diarrhea went away within a week of eliminating gluten and stayed away all year, plus my neuro, balance/coordination, and skin problems also improved hugely over the next few months. So I thought I'd found the underlying problem despite no definite diagnosis, and for the past year I have been pretty content to wait patiently and see what else clears up with time.

However, six weeks ago the diarrhea came back with a vengeance. My colon is so swollen that, er, it's hard to get even very loose stool out. I feel mildly nauseous all the time, and my SI joint pain and insomnia returned. No visible blood. I cook most of my food myself, from unprocessed ingredients, and I triple-checked all condiments, vitamins, and toiletries. I really don't see how this could be a gluten reaction - except that it did start around the same time my daughter had a resurgence of her celiac symptoms, which coincided with possible exposure to minuscule amounts of inhaled gluten for several weeks (but this seems more likely to be a coincidence: see http://www.celiac.com/gluten-free/topic/107965-mulching-straw-a-concern/ ). Anyhow, my daughter improved again shortly after that while my diarrhea is still going strong weeks later...which is why I'm worried that something unrelated is really wrong in there.

For those of you who had colonoscopies, were they able to tell you right away whether everything looked okay? Do they automatically do biopsies, or only if they spot visual problems? I'll certainly request biopsies when I see the doctor before the procedure, but she assured me that she'd do "plenty" of biopsies during my endoscopy last year, and I later found out that she only took four. And can they even do the colonoscopy if your colon is really swollen? I just want a clear diagnosis once and for all...but I am scared they're going to find something seriously wrong (and not correctable by diet) in the lower end...

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Hi Beanie.  Turn your thinking around.  You FINALLY will find out if there is a serious problem "down there"  It is always better to know, then you can take appropriate actions.  Keep a positive attitude going and try to relax some.  This really is a good thing!!

 

Good Luck.

 

Colleen

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Thanks, Colleen. I know you are right - there's nothing to be gained by worrying about it, and I'll have the results soon enough.

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Yes, me too.  I have one scheduled in July.  We just discovered blood in stool.  I might have really freaked about it, but found out my problem use to be worse before my diagnosis.  I believe it was about the time we did our sheet rock mudding project.  I remember blaming the new low flow toilet for my problems.  Learned this week that tar like stool shouldn't be ignored!  Live and learn and let your family know.

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When you say "blood in stool" do you mean bright red blood that's clinging to the stool or coloring the toilet water? Or do you mean black stool that indicates bleeding higher up that's completely mixing w/ stool and turning it black? The first is common and often blamed on things like internal hemorrhoids while the other shows the need for more study to find the cause. Like the others have said... knowing is what's important!

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      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
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      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
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