Thursday, May 14, 2009

Update on Hubby's skin condition

Some time ago I posted about our shock at discovering that my husband has celiac disease too...we never suspected that he had any problem with gluten until he went gluten free for several weeks and then drank some beer over Superbowl weekend. He broke out in a horrible scaly rash with blisters ranging from tiny to the size of a quarter.

I told him it must be dermatitis herpetiformis (aka DH), which, if true, automatically means that he has celiac disease. Many people with celiac disease have the "silent" variety, which means they have minimal symptoms or even no symptoms at all.

He went to a dermatologist, who biopsied him, but when the biopsies were negative for DH, insisted that he had psoriasis, then said it was a combination of psoriasis and eczema. The poor guy tried every cream, ointment and medication prescribed by the doctor, but nothing helped. Finally, after a couple of months of this, I told him to go back to his doctor and demand a prescription for Dapsone, which is the treatment for DH. The dermatologist again pointed out that the biopsies had been negative for the antibodies, but he couldn't argue with the fact that nothing else was working, and that the rash first showed up when my husband ingested gluten!

I've read several posts on celiac.com by folks with DH who also had negative skin biopsies but had the diagnosis confirmed by other means.

He's been on Dapsone for a couple of weeks now and the rash is healing nicely. The blisters turn a deep purple as they heal and close up....which is classic DH behaviour. I've read that the purple spots can take weeks or even months to disappear.

The fact that he's having a positive response to Dapsone confirms that it really is dermatitis herpetiformis; I've seen references to response to Dapsone in the medical literature as a validation of the diagnosis.

There is another test we could try, but he doesn't want to and I can't blame him. The old test for DH is called the iodine patch test, and consists of applying a 30% iodine solution to a small clear area of your skin. This will cause a DH outbreak in that area in those who have DH. A 30% iodine solution may not be that easy to come by, but I've read posts on celiac.com by people who soaked a bandaid in ordinary household iodine solution and applied it to their skin for several (8 or so) hours and ended up with a square patch of DH in the shape of the bandaid pad! Ow!!

In any case, my husband's skin seems to be on the mend...it's healing slowly but at least it's healing!

I'd like to re-iterate that you shouldn't feel bad about making your entire family live gluten free; you never know, you may discover that some of your family members have issues with gluten too!

6 comments:

glutenfree4goofs said...

Good point. My hubby actually volunteered GF and so far can still eat wheat whenever his heart so desires, at work and other wheat filled locations! :) Point being, if you are not celiac you won't likely "develop" an intollerance, if you are you may as well know it now!
Jessie

Mary Frances said...

My husband and I are both on a gluten free diet, but he's celiac and I'm wheat allergy. He was diagnosed first, and I only ate gluten when it was something that he didn't like.

After our first son was born I started having a lot of stomach problems and went off gluten to see if it helped. It did! I tested negative for celiac, but continued the gluten free diet because I felt so much better on it. A year or so later I tested postive for a wheat allergy on a skin test.

Carl Lowe said...

For me, gluten has caused a wide range of problems -- liver, nerves and brain difficulties: http://bit.ly/YRczE

JoAnn said...

Exactly Jessie! :)

Hi Mary Frances, all that matters is, if you feel better off gluten, you should stay away from it! It's interesting that your digestive troubles began after pregnancy though...a number of women have had celiac disease triggered by a pregnancy, but I didn't know that a wheat allergy could be triggered that way too.

Thanks for the interesting link, Carl. I too had lots of different problems from gluten.

It seems that celiac disease can masquerade as a number of different illnesses. And it can make you much more susceptible to developing other autoimmune diseases.

I have a total of 7: asthma, psoriasis, Hashimoto's thyroiditis, autoimmune hepatitis, rheumatoid arthritis, Sjogren's Syndrome, and celiac disease itself. Plus I have fibromyalgia too.

I had so many neurological symptoms that my neurologist thought I had MS! But once I was off gluten, the hand tremors, brain fog, headaches, vertigo, etc, have all either gotten better or disappeared completely. The rest of it is all improving very slowly, as far as I can tell. I've only been gluten free since the end of November...hopefully in a year or so I will be doing MUCH better physically! :)

Anonymous said...

my hubby has DH, but he does not have celiac disease - they can be mutaully exclusive. He can also tolerate small amounts of gluten (e.g. the odd beer, some oats,) but not full-on pizza or pasta. but he is much better off gluten free, and much more comfortable too!!

JoAnn said...

Hi! Thanks for visiting!

Actually the latest research indicates that ALL patients with DH probably have celiac disease, although most of them have the "silent" variety. If this is actually the case, your husband should avoid gluten completely...just because he has no intestinal symptoms doesn't mean there is no damage being done.

From emedicine (FYI, GSE = CD = celiac disease):

http://emedicine.medscape.com/article/1062640-overview

DH has recently been proposed as a cutaneous manifestation of asymptomatic-to-mild CD. The genetic predisposition to the development of gluten sensitivity underlies the disease.

* Gluten is a protein present in grasses of the species Triticeae, which includes barley, rye, and wheat. Rice and oats belong to different species and are generally well tolerated. Strict compliance with a gluten-free diet results in normalization of the small bowel mucosal changes and control of the cutaneous manifestations of DH in most patients.

* The GSE does not cause symptoms in most DH patients. Less than 10% exhibit symptoms of bloating, diarrhea, or malabsorption. However, greater than 90% show abnormalities upon endoscopic examination. Two thirds have villous atrophy detected on intestinal biopsy specimens. The other third shows elevated intraepithelial lymphocyte counts, increased T-cell receptor gamma/delta intraepithelial lymphocyte counts, or both.

o The critical role of associated GSE in the pathogenesis of DH is confirmed by the fact that resumption of a gluten-containing diet in patients with DH results in a return of the characteristic skin disease.

o Mild steatorrhea or other signs of mild malabsorption (eg, altered D-xylose absorption, iron or folate deficiency) can be demonstrated in 20-30% of patients with DH.

o Patients with DH and no apparent GI disease can be induced into developing DH by increasing gluten intake, which is often termed latent GSE (CD).

* IgA circulating immune complexes are present in 25-35% of patients with DH, although no association with disease severity has been noted. These immune complexes also have been noted in patients with isolated GSE and are believed to be related to the presence of the gut disease.

You can find out more about this and many other topics at celiac.com, in the forum.