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    Do you have questions about celiac disease or the gluten-free diet?

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Hi,

Thanks to everyone who answered my earlier post asking whether my rash looked like DH. I went to my dr yesterday. He is fairly convinced that it is DH. Ultimately, he would want a biopsy done by dermatology. It is going to take months to get a derm appointment. In the meantime, he tested me for IgA (which was normal when it was done years ago). He also tested something called glucose-6-phosphate dehydrogenase. He said he is waiting for those results before he starts me on Dapsone. I am assuming the glucose test is in regard to anemia as Dapsone can cause a certain type of anemia so he wanted me to be pre-screened. 

The plan of action is this: if I can, start Dapsone. Take Zyrtec for the extreme itch. If IgA test comes back positive, then I do not need a skin biopsy. If IgA comes back negative, then I will have a biopsy in a few months when the derm department can fit me in. Meanwhile, I am to go gluten-free from now on. I hope between the Dapsone and the gluten-free diet that they will be able to do the biopsy in a few months.

Just praying that my IgA comes back positive so I can finally have a definitive diagnosis. Meanwhile, I threw away all my makeup yesterday and bought gluten-free stuff in case that could be contributing to the rash.

Thanks again for all your support and helping me sort out these issues! 

Laurel

 

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Okay, I do not have DH, but I do know that you have to be on gluten for 8 to 12 weeks for not just the blood test, but for a skin biopsy punch.  Please, read through the DH section to get clarity on this.  Is there anyway you can get that dermatologist appointment sooner? Cancellations?  Begging?  

Dapsone is a very strong drug with very serious consequences.  You might consider just the diet (if you choose not to get the skin biopsy).  Again, look at those members who were on Dapsone and heed their advice.  

Just so others know, you were diagnosed via intestinal biopsies, went gluten free and a repeat biopsy showed intestinal healing.  Because your report from the pathologist did not definitively state you had celiac disease and you were feeling better, you started to eat gluten again and then developed DH.  I assume you were  never given the celiac (antibodies) blood test at the time of your biopsies or that your blood tests results were seronegative (happens about 10% of the time).  I recall that you want to keep eating gluten because your son has allergies and it is too difficult to be gluten free as a result.  

I am not sure really how to respond to you.  I strongly recommend seeing a doctor who knows about celiac disease.  I also think you should consider a dietitian who can help both you and your son co-exist in the same household safely.  

There are some things special about DH that you should know. When and if you decide to go gluten free you need to be VERY strict.  Like no eating out and no processed foods.  Even the tiniest amounts seem to affect those with DH.  A flare-up could occur months after a gluten exposure and it takes months and months for the antibodies to get out of the skin.  

I understand you are in agony.  I get itching no rash, that can only be relieved with ice.  I also get autoimmune hives when exposed to gluten that last for six months.  Covered.  I am cover with thousands of hives.  But that is nothing compared to DH.  I make sure that 1) I do not consume gluten to prevent me from developing DH 🙏🤞🏻and 2) prevent me from developing a 4th autoimmune disorder!  

Please do the research to insure you are making the right decisions.  

 

Edited by cyclinglady

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    60% of those with DH test false negative on the celiac serum panel.  http://www.cureceliacdisease.org/faq/what-is-dermatitis-herpetiformis-dh/ A positive dh biopsy is a dx of celiac disease, no further testing is needed. The dh biopsy alone is definitive. http://www.cureceliacdisease.org/faq/how-is-dermatitis-herpetiformis-dh-diagnosed/ http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed
    NO. Just like for the serum panel, you have to have been eating a full gluten diet for 3 months prior to testing. The dh biopsy requires the same time frame. http://www.cureceliacdisease.org/faq/im-scheduled-to-have-a-skin-biopsy-to-screen-for-celiac-disease-should-i-maintain-a-gluten-containing-diet-similar-to-those-who-are-being-screened-via-blood-or-intestinal-biopsy/ http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ And ask me how many times people have thought
Welcome!   The TTG IgA can be elevated due to other Autoimmune disorders, but just slightly.  Your result definitely requires you to be referred to a GI for further evaluation (e.g. small intestinal biopsies).  My guess?  Your odds that you have celiac disease is very high.   I am a TD2, have celiac disease, and have many intolerances and allergies.  The good news is that you many be able to ditch the MAOI diet once your small intestine heals!  
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