Could this be DH?

[Jenny]

My husband has had a chronic rash for many years, which never fully goes away.  It is located on his back, chest, thighs, and has recently spread to his face.  The rash can be characterized by fluid filled lesions that are some what symmetrical across his body. The lesions form white, flakes of skin when healing. Once healed, the skin's pigmentation will be lighter for sometime. Prior to a flare up, his skin feels as if it is wind burned.  The lesions burn when he is in the shower, but don't really itch.  He aggressively picks at the lesions, and will even use safety pins to drain the fluid before they fully form.  

The dermatologist didn't know what the rash was and suggested an acne treatment.  When my husband inquired about DH, the derm dismissed it and didn't do a biopsy.  

Our daughter has celiac.  My husband, along with his brother, father, and grandfather, all have the same GI issues, brain fog, low iron, and extreme fatigue.  His brother's symptoms cleared up when he went gluten-free, but was never tested for celiac. My husband's IgA levels were tested, and came back negative for celiac. Since many people with DH will have false negatives for the blood work, I would like to know if his rash sounds like DH.  Please let me know your thoughts!

 

[squirmingitch]

DH itches like there's no tomorrow! It is called the suicidal itch. that gives you an idea of how intensely it itches. HOWEVER, there are many rashes that are associated with celiac disease.

Jenny, were the IgA the only celiac tests your husband had? No DgP tests? Do you have a copy or can get a copy of the test results along with the reference ranges & post them here? We have members who are great at interpreting them. Was your husband actively eating a full gluten diet on a regular basis when the blood tests were done on him? Have you been tested for celiac? Your daughter got the genes form either you or your hubs (or both of you). First degree relatives of celiacs should be tested every 2 years or sooner if symptoms present. You should not have any trouble getting a doc to order the tests seeing as how your daughter is dx'd.

They symptoms you stated for your husband & his family sure point to celiac! What does the doc say about your husbands low iron?

[Jenny]

There's more...

The IgA test was ordered by our GP a year ago, and the entire family tested negative. (Our celiac daughter is IgA negative). No other blood work tests were done. 

Last month he went to a GI Doc. They talked about the abundance of my husband's symptoms (only a short version listed above), but no tests of any kind were done.  The doc recommended a full scope, which was performed.  The full colonoscopy/endoscopy didn't turn up anything; however, there were only six biopsies done with one in the duodenum. The GI Doc said that my husbands GI symptoms might be from lactose and that his iron deficient anemia is still unexplained. 

My husband doesn't have much of an appetite.  For many years, he has had to fast for 1-2 days after eating gluten heavy meals.  Prior to his scope and blood work, he was eating gluten rich foods every day and a half.

It's been challenging trying to get a doctor to listen.  It seemed that both the Derm and GI Doc dismissed celiac without properly investigating it as a possibility.

[squirmingitch]

Well then, you can see if you can find a derm to biopsy the rash for dh but they seem to be more hesitant than doctors. Derms seem to be an extraordinarily hard headed lot!

A dh biopsy is done NEXT to an active lesion NOT ON one. AND your hubs would have to be eating 1-2 slices of gluten bread per day for 8-12 weeks prior to the dh biopsy.