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Help identify if I have DH please.

Theo33

By Theo33
in Dermatitis Herpetiformis

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Theo33 Newbie
Theo33
Posted

Hi, I’m a 32 y/o male and I developed extremely itchy bumps symmetrically on my body over the past 2 weeks in these places: elbows, outer thighs, knees, below the tail bone, neck/upper-back and a few in the pelvic area. Some of the bumps are semi-transparent and filled with clear liquid. Given these specific locations and specific nature, I was certain that it was DH. I consulted my doctor yesterday and she said she doesn’t think it’s DH, but rather a contact reaction like fragrance in my detergent and/or toiletries (I haven’t changed any of the products I use in the past several months). I have a nut  allergy and have had skin contact with nuts in the past and it is never symmetrical (usually local) and I have accidentally eaten nuts in the past and that reaction is typically swelling of the throat, hives allover the body and disappears within a few hours. Its never long-term like this. Here are some pics of my elbow.

Open Original Shared Link
Open Original Shared Link

Other symptoms I’ve been experiencing over the past year, that have yet to be solved by doctors, are hair easily falling out (significantly thinner hair shaft) and occasional pressure in my intestine on my left (often alleviated by burping). Also I’ve been having daily brain-fog/fatigue for the past 20 years. I’ve had a blood test for a gluten allergy that came up negative but I know that doesn’t rule out a gluten sensitivity. I’ve tried cutting out gluten last year for about a month and didn’t notice any improvement (but maybe it wasn’t cut out long enough?). So I’m trying again against my doctor’s opinion to see if at least this rash, the stomach pressure and hair symptoms change.

So given all of this info, do you think these images indicate DH?

I really appreciate any help.

Thanks!

Theo

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squirmingitch Veteran
squirmingitch
Posted

Theo it is so hard to tell from photos. However, dh does present bilaterally & is itchy as all get out. Elbows, knees are what most derms associate with dh although dh can & does present anywhere on the body. Derms fail to read past elbows & knees & thus fail to "get" that it can present anywhere. 

You need a new derm. You need to have a dh biopsy performed & you need it done correctly. That would be ADJACENT to an active lesion not on one. If you go back to this derm she will most likely still refuse & if she consents to do it I will lay odds she will do it WRONG. 

There is no blood test for a gluten allergy because celiac is NOT an allergy - it is an autoimmune disorder. With non celiac gluten intolerance you don't get dh. DH is specific to celiac disease.

60% of us with dh test negative on the celiac blood panel.

IF you were given a celiac blood test there remains the question of whether it was the FULL panel or not. Get a copy of the tests & post them here along with the reference ranges listed.

Your rash & the symptoms you describe sound enough like celiac that you really should get a dh biopsy. You MUST be eating gluten on a daily basis or you will get a false negative. 

Theo33 Newbie
Theo33
Posted
  • Author

Hi squirmingitch, thanks for the reply! Sorry I didn’t specify… My current family doctor said that it doesn’t look like DH. And it was my previous family doctor that conducted the celiac disease blood test, and came up negative (following their advice to continue eating gluten before the test to avoid false negative). I guess I have to find a way to get a biopsy and investigate the old blood test.

squirmingitch Veteran
squirmingitch
Posted

I just can't see how any doctor thinks this is a contact reaction. 

Make sure you haven't had any oral steroids or steroid shots in the 2 months prior to a dh biopsy. 

And read thread after thread after thread on this section.

Unless you get really lucky with a derm, you're going to have to INSIST they do the biopsy & make sure you watch them so they don't take it on a lesion. If they start to do that stop them & tell them they're doing it wrong.

Yes, it would be great to get the old blood test.

squirmingitch Veteran
squirmingitch
Posted

Oh, & celiacs who have dh generally don't have the GI issues that "regular" celiacs do & if we do, then we tend to have milder GI symptoms.

And when you cut gluten for a month last year -- no, that was probably not long enough but I bet you only thought you had cut out gluten. It's not as simple as only eating meat, veggies & fruit. There are cross contamination issues & I bet you didn't know how to prevent those.

Go to the coping section & read the Newbie 101 pinned at the top & follow all the links contained din that entire thread. That will tell you how to truly eat gluten free.

Theo33 Newbie
Theo33
Posted
  • Author

Thanks for the advice! I'll look into all of this info.

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