Meds or No Meds

[Mmaloun]

So after 3 years and 3 dermatologist 1 of which did a skin test for dermatitis herpetiformis which came back negative, I finally found a dermatologist that just felt I had dermatitis herpetiformis.  He gave me two options do a blood test or just start Dapsone and if it cleared up we would have our diagnosis.  So I opted for just take the pill and see.  It did clear it up and I went gluten free as well.

After the diagnosis I wanted to know for sure, so I asked my PCP if we should do the blood test to confirm, he said we could so go back to eating a regular diet and go off the Dapsone.  Once I did that the rash came back, I had also informed my dermatologist about going off the Dapsone so he would know why I stopped the bi-weekly blood test to check for problems while I was not on dapsone.  The dermatologist said it was his “Understanding” I did not need to go off dapsone for the blood test just to resume the normal diet.  When I asked my PCP he said do what the dermatologist said.  Neither sounded definitive to me.  I want an accurate test but going off the Dapsone and diet has caused the itchy rash to return.  I dealt with it for 3 years I can handle a month more but if I can take the Dapsone I will.  Not sure if I should go back to it and still trust the blood test at the end of the month or just stay off of it and deal with the rash?

Thanks for any advice,

Mike

 

[knitty kitty]

Welcome to the forum!

I get dermatitis herpetiformis, too.  Staying away from foods high in Iodine will help with the dermatitis herpetiformis.  Iodine in foods is known to make the dermatitis herpetiformis blisters worse.  Try eliminating foods high in Iodine like dairy products, iodized salt, seafood, crustaceans, and kelp.  No sushi.   😿

This has helped my dermatitis herpetiformis immensely.

Hope this helps you, too!

[Scott Adams]

Welcome to the forum. No, Dapsone use can affect the accuracy of blood tests for celiac disease in someone with Dermatitis Herpetiformis (DH). Dapsone suppresses the skin symptoms but does not affect the intestinal damage. However, it can lead to lower levels of antibodies like tTg-IgA, potentially causing false-negative results during a gluten challenge.

Since it is clear that you have DH, can I ask why you would need to do a gluten challenge at all? DH is the skin manifestation of celiac disease, and to treat it you need to be 100% gluten-free.

This article may also be helpful:

 

[Mmaloun]

9 hours ago, Scott Adams said:

Welcome to the forum. No, Dapsone use can affect the accuracy of blood tests for celiac disease in someone with Dermatitis Herpetiformis (dermatitis herpetiformis). Dapsone suppresses the skin symptoms but does not affect the intestinal damage. However, it can lead to lower levels of antibodies like tTg-IgA, potentially causing false-negative results during a gluten challenge.

Since it is clear that you have dermatitis herpetiformis, can I ask why you would need to do a gluten challenge at all? dermatitis herpetiformis is the skin manifestation of celiac disease, and to treat it you need to be 100% gluten-free.

This article may also be helpful:

 

Thanks for the article was helpful.  So took 3 years to get this diagnosis, and never had a test, just did dapsone it cleared up so that was it.  One dermatologist did do a skin test for Gluten but it came back negative.  So when I asked the Dr about do I need to worry about what my small intestine looks like he suggested doing the blood test first then if that comes back as positive we should do a biopsy.  From what I have read I most likely have celiac but 10-20% of people can have dermatitis herpetiformis without celiac so I just want to know.  Thanks again for the info been a real change in my lifestyle, was a big craft beer fan and bread is good.  But not anymore!

[Scott Adams]

Just FYI, dermatitis herpetiformis (DH) is a skin manifestation of celiac disease, so having DH means you have celiac disease, even if you don't exhibit typical intestinal symptoms. Many people with celiac disease do not have any symptoms. 

[Scott Adams]

A better approach for you to get a formal DH diagnosis might be to eat gluten for a day, then have a dermatologist do a skin biopsy for DH near the blisters, but again, since you already know gluten causes your DH, I think you have your answer already. Also, it is idea if you could wean yourself off of Dapsone in the long term, as it does have some serious side-effects.

[Mmaloun]

On 6/7/2024 at 12:44 PM, Scott Adams said:

A better approach for you to get a formal dermatitis herpetiformis diagnosis might be to eat gluten for a day, then have a dermatologist do a skin biopsy for dermatitis herpetiformis near the blisters, but again, since you already know gluten causes your dermatitis herpetiformis, I think you have your answer already. Also, it is idea if you could wean yourself off of Dapsone in the long term, as it does have some serious side-effects.

So I did have a skin biopsy once and it was negative.  Then another dermatologist felt like that must have been a false negative with all the symptoms.  So I am comfortable with the dermatitis herpetiformis diagnosis.  My concern was if I should worry about my intestines?  SO I asked my regular Dr. if I needed a biopsy, his response was maybe but lets do the blood test.  Since both treatments are the same in your opinion would I even need a biopsy of the small intestines (I have had no real issues with that). Or just go the gluten free route?  My worry is any damage that may have been done while it took 3 years to figure this rash out.  Thank you appreciate your responses and the site. 

 

[knitty kitty]

Since you are worried about the damage done to your intestines already, you could talk to your doctor about having an endoscopy and biopsy. 

As you've been gluten free already, an endoscopy now might not show typical "gold standard" damage caused by Celiac Disease since the intestines have started healing while on a gluten free diet.  

A gluten challenge would provoke an autoimmune response typical of celiac disease.  However, symptoms may become more pronounced with the reintroduction of gluten.  

Yes, dapsone should be discontinued before the gluten challenge.  Dapsone's immunosuppressive effects will affect the test results.  

Best wishes.

[Scott Adams]

19 hours ago, Mmaloun said:

So I did have a skin biopsy once and it was negative.  Then another dermatologist felt like that must have been a false negative with all the symptoms.  So I am comfortable with the dermatitis herpetiformis diagnosis.  My concern was if I should worry about my intestines?  SO I asked my regular Dr. if I needed a biopsy, his response was maybe but lets do the blood test.  Since both treatments are the same in your opinion would I even need a biopsy of the small intestines (I have had no real issues with that). Or just go the gluten free route?  My worry is any damage that may have been done while it took 3 years to figure this rash out.  Thank you appreciate your responses and the site. 

 

Since you are comfortable with your DH diagnosis, I don't see any reason for you to go on a gluten challenge--eating a lot of gluten daily for 6-8 weeks--just to check out the condition of your intestines. The reason I say this is because with the DH diagnosis, you need to be 100% gluten-free for life anyway, so I don't really see a reason to make yourself incredibly uncomfortable for what might be months, when you need to be gluten-free anyway. Also, you run the risk of undoing any healing that might have already taken place, and damaging your villi in the process.