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What Specialty Of Dr. Should I Look For To Treat Dermatitis Herpetiformis?

Sassy Cat

By Sassy Cat
in Doctors

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Sassy Cat Newbie
Sassy Cat
Posted

I am wondering what kind of doctor would be the best type of doctor for someone with Dermatitis Herpetiformis to see on a regular basis. My husband was diagnosed with Dermatitis Herpetiformis approximately 6 years ago. I did some research at that time and learned to prepare gluten free meals for both him and my mother in law (who was diagnosed with Celiac approximately 7 years ago). My husband was not as dedicated to learning about his disease as I was. I would make special food for him and he would sneak off with the kids and eat a big mac or have a donut. At this point he is really trying to follow a gluten free diet. He has been seeing a dermatologist since his diagnosis. He does take Dapsone currently. A couple of weeks ago, my 11 year old daughter was diagnosed with Celiac. I have been doing a ton of research about Celiac once again and I now realize that a lot of the information has changed. I have found out about the possible link to iodine and the need for gluten free personal care items for my husband through my research. I can not understand how his doctor has failed to mention any of these issues while treating my husband. My husband is really trying hard to be a good example for my daughter. I am wondering if a dermatologist is really the right kind of doctor for my husband to be seeing. There has never been any mention of the damage that could be happening to his intestines and his logic is if he has no intestinal symptoms then he should have no damage - but I think he could in fact have possible damage. What kind of doctor is the best to treat Dermatitis Herpetiformis? A GI doctor, a doctor that deals with autoimmune diseases, a dermatologist (maybe a different one), or some other specialty? Any help would be appreciated.

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pricklypear1971 Community Regular
pricklypear1971
Posted

I would say the type of doctor isn't as important as their level of Celiac expertise.

Some people find very good GP's, other Internists, or GI specialists... I personally see an ND. There are really good and really bad doctors of every type. It's hard to find a good one. Is there a local Celiac group in your area? If so, contact them and ask for a referral.

Is your husband having regular blood work to monitor the effects of the dapsone? It can cause issues for some people. Open Original Shared Link

I have DH but did not have gi symptoms (at least at the time I had DH... long story). Anyway, I am extremely low in iron, b's, and d. Supplementing has helped me tremendously. So yes, he does need basic blood work to determine if he has deficiencies (as well as your daughter). Deficiencies indicate gi damage.

And yes, your husband does need to take his diet seriously and his goal should be to get off that dapsone and manage his dh by diet. It takes a long time for some people to clear DH.

Sassy Cat Newbie
Sassy Cat
Posted
  • Author

Thank you for your quick response!

I have always known that my husband needed to take his diagnosis seriously. I did a whole lot of work learning about his disease, learning to cook gluten free, and finding out about products. Despite my efforts, he had to decide for himself how seriously he was going to take his health - I can only do so much for him. I can make our home gluten free but if he is going to go to work and eat everything laying around....he is still going to have issues. He has tried to do better in the past couple of years and understands that he needs to set the example for our child. I will stay on top of celiac from this point forward because of my daughter. Of course, I am concerned about my husband as well.

When you stated that you see an ND....what is an ND?

My husband does get regular blood tests from his dermatologist...but that is the only doctor that he sees....for anything. I just do not think this particular doctor is the right doctor. I also know he needs to see a regular doctor for a basic checkup but I have been unable to get him to actually do it.

I do not think that my husband or daughter have been tested for vitamin deficiencies. I will definitely make sure that happens with my daughter and will do the best that I can do with my husband.

pricklypear1971 Community Regular
pricklypear1971
Posted

An ND is a Naturapathic doctor.

Open Original Shared Link

Yes, all you can do is encourage him. Or hit him over the head and deliver him to the appointment.

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    • Aretaeus Cappadocia
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      By Aretaeus Cappadocia · Posted

      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
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