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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

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MandeeTheGreat Newbie
MandeeTheGreat
  • Author
Posted

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 :( 

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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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    • Bayb
      Trying to read my lab results

      By Bayb · Posted

      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
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      Constant low back, abdominal and pelvic pain!

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      I agree christina, there is definitely many contributing factors! I have the pain today, my pelvis, hips and thighs ache! No idea why. But i have been sitting at work for 3 days so im thinking its my back. This disease is very mysterious (and frustrating) but not always to blame for every pain. 
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      "her stool study showed she had extreme reactions to everything achievement on it long course of microbials to treat that." The wording of this part of the sentence does not make any sense at all. I don't mean to insult you, but is English your first language? This part of the sentence sounds like it was generated by translation software.
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      Why?

      By trents · Posted

      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Why?

      By mishyj · Posted

      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
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