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hvacceliac

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hvacceliac Rookie

I live in Northern Indiana and am in need of a doctor who knows more about celiac than just looking up the word when I mention it to them. I have been diagnosed with celiac about 8-9 months ago and have been doing my level best to stay on a gluten free diet. I am having side effects on top of side effects but can't seem to get answers from my doctors..

  • 3 weeks later...

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922 Newbie

Dr. Herbstman is a gastrointerologist in Munster that has patients with Celiac.

Lesliean Apprentice

I've been doing a lot of research using the new scholar.google.com search engine. One study involved gluten-free celiac patients with symptoms. 86% were improved when gluten-free products were removed as they are federally allowed to contain .03% gluten which caused the symptoms. You already know you may have difficulty breaking down dairy becuase of the current intestinal damage. You may be having different side-effects. If so, what? Good luck!

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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