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Need A Little Advice


RB21

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RB21 Newbie

About a month ago I went in for an endoscopy. My throat was all swollen and red and my doctor told me my duodenum looks exactly like someone's with celiac. They did multiple biopsies of my throat and duodenum. Went in for the results and the doctor told me I'm allergic to some kind of food and to take prilosec twice a day and come back in June for another endoscopy. I've had symptoms for 6 years and I was told I had IBS. So I made an appointment to see an allgerisit in May even though the doctor told me to wait until the second endoscopy. I had a bad reaction to some food on Monday and I decided to go gluten free. Is this going to mess up my second endoscopy? Should I stay on a normal diet and wait or stick with the gluten free? Any suggestions would be helpful.


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Adalaide Mentor

Did the doctor actually diagnose you with celiac? Was his opinion about your intestine based on the biopsy results or just what he could see during the procedure? I'm mostly confused. Why would he prescribe prilosec for an allergy when he doesn't even know what that allergy is? To answer one question, yes, going gluten free before a biopsy will skew the results and could lead to a false negative. I'm in no position to give advice on what you should do, but if possible can you get in to see the doctor again sooner to talk things over? I also don't understand why he would want to prevent you from seeing an allergist. What difference does it make to him whether or not you determine what is causing this allergic reaction? If your throat was red and swollen that sort of sounds like it's approaching dangerous and waiting another month and a half just sounds hair-brained to me. I would certainly recommend keeping a journal listing what you eat and what symptoms you suffer from. You may be able to use that to pinpoint what is causing your problems. Other than that you may be recommended an elimination diet. Anyway, not really any advice I can offer on what to do, but hopefully you'll get some answers and start feeling better soon.

pricklypear1971 Community Regular

Get the lab report and see ifctgey biopsied you or just looked.

Did they run a Celiac blood panel?

If you go gluten-free now you can't undergo Celisc testing. Let's figure out if the testing has been done yet (if you can stand staying on gluten).

RB21 Newbie

Thanks for the advice. The doctor went off what it looked liked. They did biopsy it but I don't know if they ran a celiac test or not. He didn't say anything about it in the visit to go over what they found in the biopsy. Just that what I have is an allergic reaction to something I'm eating. No blood work was done. The endoscopy was ordered for my gallbladder problems. I'm starting to think the two are connected. The food journal sounds like a great idea, I'll do that and get a Celiac blood panel done. Thanks again so much for your help and advice.

pricklypear1971 Community Regular

Keep eating gluten for your Celiac panel!!! And make sure they give you all the tests - page 1 and 2. Insist on it. Open Original Shared Link

And I'd still get the lab report.

Yes, there's a connection between gallbladder disease and Celiac.

Your doctor is an idiot, btw.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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