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Benefit To Getting Diagnosed?

MandeeTheGreat

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MandeeTheGreat Newbie
MandeeTheGreat
Posted

Does anyone know if the gluten rash "Dermatitis herpetiformis" occurs only with Celiac disease or can it occur with gluten intolerance as well? I am getting mixed results while researching. Are there any benefits to being diagnosed Celiac? I get very ill from eating wheat (gastrointestinal symptoms, lethargy, gluten rash, nausea, foggy mind, stomach cramps etc) and I realized that, so I removed it from my diet. Then I told my doctor about it and she said there was no reason to do any testing, that if I knew it was a problem I just shouldn't eat it. Gluten isn't healthy anyway. But now I am wondering if it would be good to find out for sure if I have Celiac disease or just am gluten intolerant. 

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kareng Grand Master
kareng
Posted

Google " Celiac centers" and read what the experts say. DH is a skin form of Celiac. There are many rashes that are not DH. You can have the rash biopsied next to a fresh blister for a diagnosis of Celiac.

A few reasons for getting diagnosed:

If you are ever hospitalized, jailed or go to a nursing home, etc - these places do a terrible job, for the most part at gluten-free anyway, but do not have to give you gluten-free food without a diagnosis.

Getting your kids tested for Celiac is easier, and standard care, if a parent has Celiac.

If you are at an all day event that does not allow outside food, you will need a doctors note to get to bring your own food.

Insurance may not want to pay for follow- up care like blood tests to check for vitamin deficiencies, bone density scans in a young person, etc.

For kids in school or college - you need the diagnosis to get out of meal plans, special accommodations for classroom activities, etc

MandeeTheGreat Newbie
MandeeTheGreat
Posted
  • Author

Thank you for that information. Is there any way to be tested without consuming gluten? I dont think I could handle being that sick just to test for it. I recently had a breakout of the DH but now its healing up. I am not sure if it can still be tested if its not new?? I guess I am off to do more research. I have a hard time accepting that I could have celiac :( 

kareng Grand Master
kareng
Posted

You need to eat gluten to be tested.  And the DH needs to be "fresh" from what I have seen.

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