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Help Needed, Testing Question


janmar63

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janmar63 Newbie

I have been suffering for 7 months with a severe itching/rash issue. I saw my dermatologist beginning 6 months ago. She has not been able to figure out what my issue is. 2 months ago, I began to attempt an elimination diet based on a book I picked up. I noticed improvement after 2 weeks or so. Basically, by playing with my diet, I have come to the conclusion that I am allergic to flour or perhaps celiac. If I don't eat it, I am fine. If I eat flour, within 4 hours, I begin to itch all over my body. I went to see my family doctor today to request that he order the testing for celiac for me. He told me I have to be eating wheat for at least a few straight days for the test to have proper results. I left there determined to get myself back on a diet including wheat. I had bread with dinner and now I can not sleep from all the itching. How can I possibly eat it for several days? I am already miserable!!


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Deaminated Marcus Apprentice

Welcome janmar63,   

 

Go chat with the ladies in the  Dermatitis Herpetiformis section.

 

They are very knowledgeable. 

 

https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

 

 

................................................................................................................

 

Added:

 

The quick on and off skin response sounds like a wheat allergy.

 

You might want to be refered to an allergist to be tested to see if you have a wheat allergy

as this would be easier to confirm or eliminate than Dermatitis Herpetiformis testing. 

nvsmom Community Regular

For blood testing, you need to be consuming 1-4 gluten servings (ie. slices of bread) daily for 4-12 weeks, 2 slices of bread / day for 6 or more weeks seems pretty common. If you are already eating bread pretty steadily, you don't need to add on more time, but if you eat "gluten light" or have gone without gluten for a length of time, you should probably do this gluten challenge for a while.

 

If you have dh at the moment, you might want to see if you can get a skin biopsy (taken from beside the rash I believe). if you get a positive biopsy, it could save you some time and some discomfort if you have to keep eating it.

 

I agree with Marcus that a wheat allergy could be a factor too.

 

I hope you figure it out soon.  Best wishes.

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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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