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Where Can I Find A Doctor To Test Me For Celiac?


egarcia5

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egarcia5 Newbie

I have been seeing a gi doctor for 12 yrs for esophageal strictures, severe acid reflux, abdominal pain and bloating. I have has 11 dilitations of the esophogus done and as far as i know never been tested for celiac. Been taking nexium for 12 years but still have severe bouts of acid reflux. Over past few years i have developed othere severe symptoms which has resulted in me becoming disabled. No doctor seems to know what is going on with me so they ate of course blaming stress and anxiety. Symptoms : severe balance problems, difficulty walking at times, slowed mental status at times, difficulty talking at times, numbness and tingling in hands face legs feet throat, severe headaches, muscle spasms, stomache pains, bloating, loose stools, nausea, thyroid issues, hypoglycemia, sleepy after meals but awake in middle of night, difficulty swallowing, swelling in my throat. The list goes on but those are some of my most severe i believe. I have asked for a test from gi doc He says no just try gluten free diet for 16 days. I am gluten free for 41 days and have felt an improvement in some symptoms. My mother in law thinks it may be gluten ataxia. Hollistic dc thinks its gluten as well. Can anyone direct me in the right direction?


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kareng Grand Master

GI docs and "regular " docs can order the Celiac blood tests. Even OB/GYns can order it if you have one. However, for the blood test or endoscopy ( GI doc only) you need to be eating gluten.

cahill Collaborator

As kareng said any doc can order a celiac panel . The problem is finding a doc that knows what a celiac panel is :rolleyes:( my granddaughters doc had to go look it up and still was not sure so my daughter called me from his office to ask me what it was .) , what test to run and then what to do with the results once they have them..

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    • GlorietaKaro
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    • trents
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      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
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