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lushgreen

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lushgreen Apprentice

I have just begun suspecting gluten insensitivity/celiac disease for myriad health-related problems. I was wondering what sort of a doctor I should look for to help with the diagnosis. I live in NYC and will call the center at Columbia next week when they re-open. Any suggestions would be appreciated. Thanks.

  • 4 weeks later...

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jriegel Newbie

i am also beginning to suspect. i cut wheats out of my diet for a few days and now every time i eat them i get a horrible pain in my stomach and within an hour "indigestion" and by morning i wake up and my gut feels like there's a rock in it.

anyway, i am wondering what kind of doctor do i need to go for questions and testing? i am in a new city and just started new health insurance, so i really don't know where to begin. suggestions, please.

watkinson Apprentice

Hello to both of you, :)

It depends on your insurance. I had to see my primary doctor first and get a refferal. Then I went to see an endocrinologist and an allergist. The endo. did the blood work and the biopsy, the allergist tested me to see if I aslo had any food allergies. Turns out corn and pecans get me. <_<

Make sure you don't give up eating gluten until after your blood test. You have to have the antibodies in the blood for a positive test. If there is no gluten there will be no antibodies.

The other way to do this is to do your own test. Stop eating gluten and see if you feel better. If so...who cares what the blood test says, you know you feel better. I do however recommend that you go the traditional route and find out through your doctors.

Good luck with the testing, hope you feel better soon, Wendy

jenvan Collaborator

I choose a GI doc, who did my endoscopy. However, most docs can give you the blood test. My hematologist did that. If those tests come out negative, and you are confident of a gluten intolerance, then I'd try an intolerance food test, which you can do via mail as well...

jriegel Newbie

thank you, both. that is very helpful :)

Carriefaith Enthusiast

When I got sick my general practitionar referred me to a GI specalist. If you want an official diagnosis make sure that you stay on the diet until after the bloodwork or biopsy or you may get false negative results.

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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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