How Dermatitis Herpetiformis relates to Celiac Disease

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Hi Jill and welcome to the list,

It is now commonly recognized that dermatitis herpetiformis (DH) is a manifestation of celiac disease. Diagnosis with DH is all the confirmation you need to know you have CD; in fact, it is just as reliable a way to get diagnosed as the blood test.

Many people with DH do not have intestinal damage, but some do. From what research I have heard, there seems to be a strong likelihood that those with DH who have no intestinal symptoms at diagnosis and control the rash with Dapsone only (and not the GF diet) eventually tend to have intestinal damage. In Europe, all DH patients are told to go on the GF diet, no ifs, ands, or buts. In the US, many doctors simply give the patient dapsone and let them choose to go on the diet or not; but I suspect that eventually they will realize that DH patients have as much need to be on the GF diet as all other celiacs.

The other benefit to the GF diet is that eventually you will be able to taper off and stop taking the dapsone, which is not without it's own difficulties. Otherwise, you are looking at a lifetime of Dapsone. I would hope that the dermatologist who diagnosed the DH prescribed the dapsone and a GF diet. I think both of these are absolutely necessary to short- and long-term good health for those with DH. Another reason the GF diet is important for you is that, with your family history, risk of developing an associated autoimmune disease is high. You don't want to mess with that, especially with lupus in the family and your own hypothyroidism. This list of associated autoimmune disease is long and unpleasant.

I know that the GF diet seems very restrictive and immense when you first think about it. Yes, you will be leaving many of your favorite foods behind, and you will go through a process of grieving and loss; yes, you will need to find ways to cope with many social issues; yes, kids are a complicating factor (especially if you have a 2-month-old baby; that in itself is quite a challenge). But these things are all do-able; the challenges can be met. There are many books and support groups (including this list) that can help with advice and suggestions; seek out the help you need. You don't need to jump in to the diet and be perfect on the first day. Take things one step at a time; don't worry about mistakes: learn from them and move on. Yes, most celiacs are upset about the GF diet, but once they realize how much better they feel on the GF diet, they aren't often tempted to cheat.

I really hope you will consult a celiac-savvy gastroenterologist or knowledgeable dermatologist who can confirm what I am saying. I think it is important for you to be convinced of the need to be on a GF diet so you will feel no doubts about going GF.

Pam Newbury Santa Cruz Celiac Support Group 831-423-6904 pknewbury@...

-----Original Message-----From: [mailto: ]On Behalf Of Jill CroftSent: Friday, October 06, 2006 10:31 AMNo Reply; Subject: Re: [ ] Digest Number 514

Hi,

My name is Jill and I live in Sunnyvale. I have just been diagnosed with dermatitis herpetiformis, which is a skin disorder related to celiac. I have suffered from it for years, and was misdiagnosed by doctors (they all thought it was eczema). Autoimmune disorders run in my family though, I have a cousin with Lou Gherigs, aunt with lupus, and another aunt who was just diagnosed with celiac ...I myself have autoimmune hypothyroidism)

My husband and I had tried for 3 years to get pregnant, but had several miscarriages. When my aunt was diagnosed with celiac, she told me one of the symptoms was multiple miscarriages, so I began to look into it more thoroughly. Well, last fall, I found out I was pregnant, and during that time my symptoms subsided, so I forgot about it. In August I gave birth to a healthy boy, but 5 days afterwards, completely broke out in a itchy rash. I went to the dermatologist and demanded to be tested, and sure enough, it was positive for DH.

I have some questions, perhaps some of you can help me with.

I am pretty sure, but since I have DH, does that mean I automatically have celiac? Do I need further testing, or should I go on the diet?

Did anyone else get upset about going on this restrictive diet? I am putting it off, because I can't imagine giving up everything I love. Plus, I can't imagine going to parties, and family get togethers, only to stare and salivate over food I can't have. With kids in the picture now too, the stress of being on a specialized diet scares me.

Any encouragement you have would be great!

Jill

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