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Another "could It Be Dh?" Thread

JenR

By JenR
in Dermatitis Herpetiformis

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JenR Rookie
JenR
Posted

I have been reading a lot in these forums and learning a lot about DH! It appears to be a, uh, many splendored thing ;)

I have a rash that comes and goes and by process of elimination I believe it may be DH. However, it's not "textbook" along with the usual definitions one finds on medical websites.

I am 36. 10 years ago I had a terrible outbreak of this red, very itchy, sometimes burning, rash. It was all over the place on joints/bending parts including: elbows, knees, outside of wrists, knuckles. I even had some of it on my hips where the bones protrude a little. I saw a dermatologist who diagnosed me with granuloma annulare which is essentially a nuisance, benign, nothing to do but treat symptoms.

I've been googling around on granuloma annulare and learned that what I have really doesn't sound a whole lot like GA. But DH kept coming up in the differential diagnosis... the consistency of "elbows and knees" is what struck me.

I have flares or outbreaks occasionally but never as severe as that first one. It almost always is on my knees and/or elbows, not necessarily bilateral. Right now I have a spot of it on the front of my left knee (just below the kneecap) which is raised, red, warm to the touch, itchy on & off. It starts out as a few red bumps the size of a large zit but then they seem to get large and spread and merge. My current knee spot is about the size of a nickel but it has a few small buddies hovering nearby. I had a smaller spot on my left elbow which has gone away as the knee spot erupted. It seems to respond somewhat to hydrocortisone cream. The elbow spot, I kind of treated like I do mosquito bites (but it wasn't a bug bite, it was my old rash friend) - poke it with a fingernail and sometimes it lets out a clear fluid. The bumps themselves are never white as I've seen described.

So I guess my question for you all is, can DH be this mild? I've read so many accounts that describe it as just horrific. Also it seems to flare up on a seasonal pattern, spring/summer seems worst as best I can tell (wish I'd kept a log all these years...)

I think it's also noteworthy that about 7 years ago I was diagnosed with Hashimoto's (autoimmune) hypothyroidism. I've read over and over that up to half of people with DH have thyroid problems, which also made me scratch my head (as it were). I don't have any other symptoms (so far as I can tell) of celiac intolerance - I know that's not a requirement, just thought I'd mention it. Also to my knowledge, nobody in my family has celiac disease or DH.

Any thoughts or advice would be helpful. I'm due for my annual physical soon; my internist won't know what to do with DH and dermatologists are VERY hard to come by where I live, so I'm just not all that optimistic about getting the biopsy anytime soon. I also don't want to do a gluten-free trial unless I have a really good reason to do so - of course I love bread, have a family to feed, the usual sad story. :D

TIA.

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nora-n Rookie
nora-n
Posted

Yes, I read that DH sometimes does not burn all the time.

can you maybe get the usual celiac blood tests? Or a private test at enterolab? Because you mention that there are no dermatologists/they cost much.

nora

JenR Rookie
JenR
Posted
  • Author

Thanks Nora - I am going to mention this issue to my doctor when I go for my annual exam in a couple of months but I doubt she'll see rationale for celiac bloodwork - and frankly I'm not sure I see it either as it must be a very low grade gluten sensitivity IF I have it.

I never heard of enterolab but looked into their products - seems the stool test isn't all that sensitive to celiac, so I think I will save my money for now. Open Original Shared Link

Looks like the genetic test (mouth swab) just looks at one gene, so I don't think that is conclusive either? Other than the possible DH, and my hypothyroidism, I don't have any symptoms or flags that would indicate full blown celiac versus just a gluten insensitivity. Or am I misunderstanding things?

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