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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? - 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Endoscopy Un-Results And Mysterious Vanishing Pains
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Question One:

I had an endoscopy/colonoscopy on the 12th after 8 weeks of re-glutening myself. They said to expect test results back in a week. The day after my procedure I received an email that said:

Results of your upper endoscopy biopsies: Normal small bowel, Gastritis.

The tissue removed from your small bowel during your procedure is normal showing no signs of infection or

cancer.

Results of your colonoscopy biopsies: Normal colon, Normal terminal ileum.

Normal colon. The tissue removed was normal showing no signs of infection, inflammation or cancer.

Normal terminal ileum. The tissue removed was normal showing no signs of infection, inflammation or cancer.

followed by instructions to set up a follow-up appointment and a short description of Gastritis. She was specifically checking for celiac as well as Crohn's and H. Pylori, but I don't see mention of any of those, not even in a "showed no signs of sprue etc." way. I haven't heard a peep from them since, and it's taking awhile to get the appointment set up. I've been obsessively checking the mail and my inbox every day, hoping for another letter, but then today it finally dawned on me that maybe that was all they're sending. Does that look like a typical final report? If it is, it's a horribly disappointing and anti-climactic one.

Question Two:

Jumping back in time to my gluten challenge. Despite the fact that I knew I was probably going to suffer I was super excited to indulge in wheaty things again, and I didn't let little things like balanced meals get in the way of it. I don't think I so much as looked at a fruit or vegetable the entire last leg of it.

It was the worst 8 weeks of my life. Among other things, my muscles constantly ached like I had done a triathlon the day before, I developed horrible sciatica that left me bedridden when it would flare up, I was constipated and nauseous at all times, I was so exhausted I could barely walk up the stairs and I spent the entire last four weeks curled up in my bed. It also triggered my anxiety and depression horribly and gave me such bad derealization I was having trouble differentiating between dreams and real life and had started to actually believe I was a ghost. Thankfully it started to lessen the day after I went back to gluten lite (I'm still in the process of transitioning to totally gluten free) and I'm now almost back to my normal level of brain fog. Plus it lead to a lot of really bad morbid poetry that I will *cherish forever* so I can't really say I regret it.

But anyway, back to the point of this- which is that during the challenge the thing that I didn't have was the lower right abdominal pain that had been one of my main complaints. I had basically everything but that. But now that I'm back off the gluten I have it again! What?? I am completely baffled. The only thing new that I'm eating is fruits and vegetables (and gluten-free bread products), but I'm still being pretty junk-foody and barely eating any fruits/veggies- certainly not enough that I would suspect fructose issues, plus I was eating like a cup of honey a day during the challenge. But I don't know what else to think, apart from oh bother, my body wants me dead.

Advice or comments on either question would be greatly appreciated, thank you!

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It certainly doesn't sound like they were looking for celiac in your endoscopy. Was that your understanding of what this was all about? Since you were glutening, I presume so and you said she was looking for it. Really unusual not to mention it. You need to clarify with the doctor if they in fact looked for celiac. There was obviously inflammation there if they found gastritis; inflammation is uaually one of the first signs of celiac disease.

Ask for copies of the report from the pathologist so you can see for yourself. Many doctors will just summarize without letting you see for yourself. It would be really frustrating to think they didn't take celiac samples. I just realized that I really don't know if you find celiac if you are not looking for it. I hope one of our more knowledgeable testing methods people will answer this question. One study I found seems to indicate that you have to look for it:

http://www.ncbi.nlm.nih.gov/pubmed/18979585

During endoscopy, multiple biopsies (1 bulb and 4 distal duodenum samples) were taken. Anti-endomysium antibodies were evaluated by immunofluorescence method, anti-human tissue-transglutaminase antibodies by an enzyme-linked immunosorbent assay or radioimmunoassay.

But I may be wrong on this because many of our posters have been diagnosed quite by accident.

As for question No. Two, it is pretty obvious that you react badly to gluten and shouldn't eat it, celiac or not. You may be one of the non-celiac gluten intolerants who have most of the same symptoms as celiacs but apparently not the intestinal damage. As far as the lower right abdominal pain, while this seems a mystery it could possibly be attributed to your body trying to deal with the unfamiliar starches we tend to eat when we are eating substitute grains. During your transition to a gluten free diet, it is generally best to eat whole foods only and hold off on the gluten free substitutes until you have had a chance to adjust. You say you are still eating junk-foody so this may mean a lot of these types of foods. Whole foods means meat, fish, chicken, fruits, vegetables, nuts, seeds, good quality oils like olive, avocado, coconut, and avoid dairy at first -- you can challenge it later once you get a diet established that you do not react to. If you seem to have a problem with a food, eliminate it for now and eat only the foods your body does not object to. You may not have any additional intolerances, but you also may.

This transitional eating time will last a month or two. If you continue to have digestive problems, you should probably do an elimination diet to try to discover what other foods are bothering you. I know I found many foods once I got rid of the gluten overload that were causing me problems.

Give this a try and see how you fare. Keep in touch and let us know how you are doing.

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It certainly doesn't sound like they were looking for celiac in your endoscopy. Was that your understanding of what this was all about?

...

As far as the lower right abdominal pain, while this seems a mystery it could possibly be attributed to your body trying to deal with the unfamiliar starches we tend to eat when we are eating substitute grains. During your transition to a gluten free diet, it is generally best to eat whole foods only and hold off on the gluten free substitutes until you have had a chance to adjust. You say you are still eating junk-foody so this may mean a lot of these types of foods. Whole foods means meat, fish, chicken, fruits, vegetables, nuts, seeds, good quality oils like olive, avocado, coconut, and avoid dairy at first -- you can challenge it later once you get a diet established that you do not react to.

...

She said she was going to look for celiac during my initial appointment and was the one who told me to go back to gluten for a bit. We also discussed it very briefly before the endoscopy itself and I saw "celiac" written on the chart before the procedure. But it really is weird and slightly worrying that it's not in the report at all.

As for the pain, I've previously gone on long stretches where I was eating really well- all wholesome home-cooked dishes of gluten-free whole grains and vegetables and lean meats, no processed foods or junky things and I still had the pain then. I was gluten-lite then too and I always just figured all my issues were related to the same thing which I thought for sure was gluten, but it seems that although most of my issues are linked to it the LRQ pain is not...or at least doesn't appear to be. I started eating dairy again during the challenge but I stopped again a week after the endoscopy because it makes my stomach grumpy.

I will definitely be cutting gluten completely out of my life for good after all this though. It is pretty clearly my body's nemesis.

Edit: It also says on the info sheet I got just after the endoscopy that they took biopsies for celiac and H. Pylori, and my mom says they talked to us about it afterwards (I was still rubber baby druggy bumpers at that point, so I don't remember it)

Edited by Eclara

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