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Possible Dh For My Hubby...
Gluten-Free Celiac Disease Forum at Celiac.com (Home) > Celiac Disease Gluten-Free Diet Forum at Celiac.com > Dermatitis Herpetiformis
buffettbride
Ok. So we'll start with a little background. My husband isn't my daughter's biological father, but he adopted her as a toddler. My daughter was diagnosed with Celiac almost a year ago. She did have skin issues and of course they cleared up right away when going gluten-free. It was always classified as eczema, never DH, even through the Celiac diagnosis. It only flares up if she is glutened, and it is the same eczema-like rash.

However, I am not here today to talk about my daughter. This is about Hubby. Long before we knew anything about Celiac disease or gluten-free, my husband has had this weird rash between his fingers on one hand. The rash consists of little white, opaquish bubbles filled with clear liquid. Sometimes there is just an isolated spot on one finger about the size of a dime, and sometimes it flares up and runs the length of his whole finger and starts spreading to his palm. Of course, it oozes (he even got a lovely MRSA infection when the skin was open, but I digress...). He has had this rash off and on since his teen years, but pretty consistently the last 5.

Well, last year around May, our daughter was diagnosed and our gluten-free journey began. We made our house gluten-free, but Hubby, my son, and I do eat gluten out of the house. We can go weeks, though, without any gluten, and we are definitely gluten-lite.

A few months ago, after a serious gluten-bender when Hubby and I were away for the weekend (kids were at grandmas), his hand started to flare up again. I made a comment that it hadn't really been bothering him much since....you guessed it! When our daughter was diagnosed and the family went gluten-lite.

We started putting some other pieces together--flakey, yellow, and frequent stools (he also complained of always having to go or his stomach being "not quite right"). All these things were milder when gluten lite.

We have determined, of course, that he does much better without gluten. He is the kind of person, though, who will need a proper diagnosis to stay committed to the diet. That said, based on my description of his finger-cooties, does it sound like it could be DH? We are going to persue diagnosis that way first.

Anyway, how odd it is that a father/daughter of non-blood relation may both have Celiac and at minimum, gluten intolerance.

Are dermatologists just as uninformed about DH as most docs are about Celiac in general?

What kind of battle are we looking at?
RiceGuy
More and more I am of the opinion that Celiac (or at least gluten intolerance) is much more widespread than current statistics indicate. Maybe even everyone.

Sorry I can't give any idea of what dermatologists know or think, except every person I know who I believe to be Celiac has gotten a diagnosis of something other than DH, wheat allergy, or anything connected with diet, much less gluten.
yolo
QUOTE (RiceGuy @ Feb 22 2008, 03:08 PM) *
More and more I am of the opinion that Celiac (or at least gluten intolerance) is much more widespread than current statistics indicate. Maybe even everyone.

Sorry I can't give any idea of what dermatologists know or think, except every person I know who I believe to be Celiac has gotten a diagnosis of something other than DH, wheat allergy, or anything connected with diet, much less gluten.



According to what I have read in the book Dangerous Grains and elsewhere, 30% of north Europeans and Italians have the gene for celiac and 10% of the rest of Europe also has the gene. It only shows up however from a stressful incident so not everyone has it that could. That being said it isn't at all odd that people in the same household but not genetically linked could both have celiac or DH especially if they are of European descent. This of course is way different than most doctors in this country are willing to believe. They seem to have this belief before science in this area since it seems that amongst our medical community they believe somehow that celiac falls somewhere in the category of old wives tales and superstitious quackery from the 19th century (i.e., where diet and natural remedies were paid attention to). Thus go to Europe for your statistics plus a few celiac centers here in the States. Maybe by going to centers here they can recommend a good gp since fortunately things are starting to change for the better.
buffettbride
Hubby is Italian. I am (and my daughter is) mostly English/French/Irish, in that order.


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