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I recently had a an upper endoscopy for celiacs and got the results back today. The doctor took 16 biopsies and said my esophagus and stomach were red and irritated. From the 16 biopsies the results came back unremarkable. I have acid reflux and I may have eosinophilic esophagitis. I tested negative for celiacs in the biopsy and blood work. I do however have the genetic marker for celiacs and my mom has celiacs. Has anyone else had this happen and what did you do? I have been told by some that I should go gluten-free and also get a food allergy test. 

TIA

 

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(I am going to pretend that you are my kid.)

"Whew!  I am so happy that they did not find celiac disease damage.   What a relief!  I am bummed that we still did not find the root cause of your issues.  I know that you are not crazy and you are not feeling well. There must be a reason why your celiac blood test was positive.     I am still going to suggest continued celiac testing in the future, because you can still develop it at any time in your life.  Maybe celiac disease is just starting, who knows? What I would recommend (as your mother who has celiac disease) is to trial a gluten-free diet for three to six months.  See how you feel.  It will not hurt you as long as you eat a varied diet full of fruit, veggies, fats and proteins.   Based on your symptoms, maybe you need a pill camera to fully check things out?  Your cousin Angela was diagnosed with Crohn's this way and we were all sure she had celiac disease.   We'll check out allergies too since many of your cousins all have epi pens (nuts, exercised induced asthma, insect stings) and insure you are not developing any other autoimmine disorders.   We just need to keep advocating for your health.  Hugs!"

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10 hours ago, kunger said:

I recently had a an upper endoscopy for celiacs and got the results back today. The doctor took 16 biopsies and said my esophagus and stomach were red and irritated. From the 16 biopsies the results came back unremarkable. I have acid reflux and I may have eosinophilic esophagitis. I tested negative for celiacs in the biopsy and blood work. I do however have the genetic marker for celiacs and my mom has celiacs. Has anyone else had this happen and what did you do? I have been told by some that I should go gluten-free and also get a food allergy test. 

TIA

 

You stated in previous posts that your celiac blood test was positive.  Just a typo in this post?  

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As cyclinglady suggested, keep your celiac panel checked. If your biopsy is negative, maybe it's gluten sensitivity, which has no test yet: it's a disease of exclusion.

A famous Italian gastroenterologist explained that, at the moment, there are no specific markers for gluten sensitivity and the only immunologic alteration you COULD possibly find is the positivity to first generation antigladin ab (AGA class of IgG, rarely IgA), which result positive in the 40-50% of patients with this sensitivity. On the genetic level 50% of the cases are positive to HLA-DQ2 and/or DQ8, this goes up to 99% with celiac disease and however the 30% of the entire population is positive.

(hope my translation is understandable!)

 

Cyclinglady may I ask you: Angela had any skin symptoms? What test do you need to insure you are not developing an autoimmune disorder?

 

 

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9 minutes ago, Chemist89 said:

As cyclinglady suggested, keep your celiac panel checked. If your biopsy is negative, maybe it's gluten sensitivity, which has no test yet: it's a disease of exclusion.

A famous Italian gastroenterologist explained that, at the moment, there are no specific markers for gluten sensitivity and the only immunologic alteration you COULD possibly find is the positivity to first generation antigladin ab (AGA class of IgG, rarely IgA), which result positive in the 40-50% of patients with this sensitivity. On the genetic level 50% of the cases are positive to HLA-DQ2 and/or DQ8, this goes up to 99% with celiac disease and however the 30% of the entire population is positive.

(hope my translation is understandable!)

 

Cyclinglady may I ask you: Angela had any skin symptoms? What test do you need to insure you are not developing an autoimmune disorder?

 

 

Angela had only abdominal pain every few months or so.  Painful enough to go to the ER (nothing found) many, many times.  Her trigger seemed to be fun events like traveling.  Wierd, huh?  She did not exhibit any of the typical Crohn's symptoms at all (kind of like me having celiac disease with no gut issues when i was diagnosed).  The damage was pretty severe and was found at the end of her small intestine before going into the colon.  A spot that an endoscopy or colonoscopy could not reach.  Her GI was shocked that she did not have daily pain.  

Here is a link that is good about explaining AI testing.

https://www.questdiagnostics.com/dms/Documents/Other/Autoimmune-Arthritis/MI5462_FAQs-Tests-for-Autoimmune-Diseases.pdf

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