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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
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greenbeanie

Lymphoid Aggregate In Terminal Ileum

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Does anyone know what it means have a biopsy of the terminal ileum (done during a colonoscopy) show a "lymphoid aggregate"? It says there's no evidence of an inflammatory bowel disease, and that this is benign and not cancerous. So I'm assuming the lymphoid aggregate is nothing too significant, but I'm curious about what it means. Could gluten cause it? 

 

When they did my upper endoscopy last year they only took four samples, with none from the duodenal bulb, and no lymphocyte counts. The GI assured me beforehand that she'd do plenty of biopsies, but I woke up and found out she'd only done four. And I'd been gluten-light for over a decade, then briefly gluten free, then did a six-week gluten challenge leading up to the endoscopy (during which I only had one piece of bread most days because it was making me so miserable and my hair started falling out). So altogether, there were many places where doubt crept in about whether this had really been enough to rule out celiac. I'm sticking to the diet, regardless, as the improvements have been huge and life-changing. But I guess I'm still trying to piece together a coherent explanation of what's going on. The GI also made blatant factual errors about my family history on the colonosopy report, so in general I'm not sure if she's even reading my file or reports carefully. 

 

I guess what I'm really wondering is whether a "lymphoid aggregate" way down at the end of the small intestines could be caused by celiac or NCGS, or whether it's totally unrelated. The procedural report did note that she was able to get the scope up through the colon and into the terminal ileum unobstructed. 

 

 

 

 

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I had a mass the size of a orange in my mediastinum that I had removed in December of 2010.  It was a mass of lymph cells, all benign.  At the time the doctors really had no clue what caused it.  After my celiac diagnosis my doctor and I were talking and he said it might of had to do with the fact that the lymphatic system releases lymph cells to counter act inflammation and sometimes they can congregate in places where there is a lot of inflammation.  Why they ended up in my chest is a mystery, but I was having a lot of chest, shoulder and back pain for years before that and our digestive system goes from your mouth to anus so it is safe to say that there might be inflammation in those areas as well.  Maybe it is from an inflammatory response in your intestines.  While the report stated there was no inflammatory bowel, that doesn't mean it wasn't inflamed before.  Just a thought.

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Wow, that's a big mass you had! Interesting about lymph masses in general - that makes sense. I've been strictly gluten free for over a year, so I wouldn't expect to have active inflammation from gluten anymore, but my endoscopy last year did find inflammation in my esophagus and stomach (plus a hiatal hernia). My tongue also stayed swollen for months after my gluten challenge, and it eventually went most of the way down after I cut out sulfites too. So there certainly has been inflammation in my digestive tract!

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