Any Chance This Is Dh? And Biopsy Question

[davenbacker]

Hi! I'm new to the forum; just posted my story here:

https://www.celiac.com/forums/topic/112414-microscopic-colitis-sensitivity-no-celiac-diagnosis/

 

Background: I don't have any official diagnosis...  but I think I have celiac and possibly DH. Starting in my late teens, I had itchy bumps all over my back. Mostly higher up, but some all the way down on my buttocks. I always thought they were acne, because I could "pop" them (mostly getting clear fluid). But they itched like crazy (I'd have trouble leaving them alone in class or at work), hurt (kind of a burning feeling almost) to scratch or pop. And they seem to take forever to heal; scabbing up and scarring.

 

When I went gluten-free, the itchy bumps mostly stopped. I still get some when I slip up, and I still get some that are just not as itchy or widespread. They're still taking forever to heal. I don't really have any active "bumps", but I thought I'd send a picture anyway to see if the DH experts in this forum could tell me if it might plausibly be (mild) DH? Here's a picture of part of my back showing the rash/acne/whatever:

Open Original Shared Link

Another question...  I would still love to have a formal diagnosis, to make it easier to explain to people (including my family). Is it important for a DH biopsy to be consuming significant gluten for a long period of time? Or...  if I have another slip up and develop some more active bumps, would a dermatologist have a chance of diagnosing if I got to them quickly enough?

 

Thanks for your help!

-Dave

 

[squirmingitch]

I know you would really like to have a formal dx but the odds against that are pretty astronomical unless you do a gluten challenge. Yes, you have to be consuming gluten for a dh biopsy just like with the celiac blood panel. Sorry. There have been no studies that I have seen where someone with dh who was gluten free for a long time & got cc'd & ran to the derm & got a dh biopsy & it turned up positive. EVEN if what you propose did happen & you ran to the derm real quick, you're going to play hell getting a derm to do a dh biopsy. They'll say.....

it's scabies

it's psoriasis

it's eczema

it's common dermatitis

it's bed bugs

it's poison ivy

it's poison oak

& they will prescribe you a plethora of creams & ointments for years as they tell you it's the next dx in the lines I posted above. Seen it happen a million times. And EVEN if they didn't say all that & they DID do a dh biopsy -- 95% of the time they do it ON a lesion which is the WRONG way to do it. 

Yes, I did look at your photo and read your linked post. It might be dh & then again it might not. it's just not something one can really say from looking at a photo. I'm sorry. Secondly, there are many skin rashes & problems associated with celiac disease & it could possibly be any of them.

 

Here's the thing Dave ~~~ you're gluten free & feel better that way & issues are resolving for you. My advice would be to treat yourself as if you have a dx of celiac disease & never look back UNLESS you are willing to do a gluten challenge.

As to your kids, how about letting them have gluten only at school? You could even put it in their lunch you pack. You can put individually packaged packs of crackers or cookies & allow them to eat that at school. If they begin showing symptoms of celiac disease then you can go get them tested when that happens.

[davenbacker]

Thanks, squirmingitch, for the hard truth. I had the vain hope of getting a diagnosis without making myself sick. But at least it's easy for me to stick to a careful diet, since I feel pretty bad when I mess up. The last attempt at a gluten challenge wasn't nearly long enough and did a lot of harm, so I don't intend to do that again.

As for the kids...  that's something I'm going to need to sort out with my wife eventually. I want to test them on it sooner or later, but they're young enough that I'm content to leave them gluten-free, since it doesn't really do any harm, and they're all still pretty little and developing so much. Once we get to sleepovers and such, it'll be more important so that they don't have to deal with the social problems.

[squirmingitch]

You're welcome Dave. 

Yes, you & the wife will figure out what to do with the kids.

Please be sure & read the Newbie 101 in the coping section so you really know how to protect yourself.