I get a rash...more like a rosecea like redness around the skin on the top of my face within an hour. This in addition to stomach bloating, diarrhea, racing heart, and shakiness in the short term.

Within a day or so, broken sleep, chest cough, and knees and hips joints so swollen and painful I can't even hardly move.

I agree it's probably DH for both of you. faduckeggs, did the derm biopsy the blisters or beside the blisters?? in order to get a correct diagnosis of DH the biopsy has to be beside the blister and within 3-4 days of the occurrence. from what I've read on celiac.com few derms know how to biopsy correctly.

Supposedly DH is super duper rare, and yet skin rashes from gluten seem like they're quite common. Do you think it's because it's so hard to diagnose, or are there just a lot of non-DH skin reactions to gluten?

Hmm... maybe not so rare:

http://en.wikipedia.org/wiki/Dermatitis_herpetiformis

The derm biopsied one of the blisters from my knee, but not the skin next to the blister. She insisted the biopsy was a waste of time, because I am overweight, so I can't have celiac.

I wasn't too impressed with her and have never gone back.

You're supposed to get the skin next to the blisters. The blisters already have had the antibodies blown out of them, or something to that effect.

Wow, your derm was a total imbecile. At least 30% of celiacs are overweight.

Well, it was a couple of years ago now that I was talking to my doctor's PA about my so-called dairy issues, and then at the end of the visit, she asked, "Is there anything else you want to discuss?" - so I mentioned the rash. Her eyes got kind of big and round, and she said, "It might not be dairy, it could be wheat".

She sent me to a dermatologist, but the guy looked at it and said, "It can't be wheat" and recommended I put Aquaphor on it. He didn't do any tests or anything.

I went gluten free a week or so later. I still have a gigantic tub of Aquaphor sitting around here somewhere.

I think it's the inability to diagnose rather than rare, the 2 stories by faduckeggs and citris seem to support that Part of the problem may be is that it has to be biopsied within days of the blisters showing up. most people probably wait weeks or more before the see a derm, then the problem is getting one who knows what s/he is doing and is willing to consider DH

I haven't eaten wheat since last December, but tomorrow is pizza day. Let's see if I will notice any reaction to wheat. It's sourdough pizza, with less gluten than ordinary pizza, though.

whenever i have sugar/wheat products, i get arthritic pain in my joints. it comes on in 2 days, stays for 5.
my intestines do all kinds of things. bloat, diarrhea, cramping - usually for two B.Ms..
and sometimes i get miserable headaches for several hours.

Only heartburn so far. Maybe my theory that the wood burning oven burns the calories and the gluten away is true!

LOL! It takes a lot to destroy protein.

Here's a celiac website outlining who should be tested:
http://www.celiacdisease.net/symptoms

cancker sores are on the list

May not be a big deal for commited lowcarbers, but perhaps their relatives should test also?