Nice resource! Thanks! I'll definitely be passing this along. (I can't believe I haven't seen it before.)

I'm working at getting a diagnosis. The more I learn about celiac disease, the more I see the symptoms of it in me. Plus, the past week I've had dermititis herpetiformis (or something that looks VERY similar to it) all over my hands which I read somewhere is almost only a symptom of celiac disease if that is in fact what it is.

Anyone else have DH? What do you do for it? I'm going out of town tomorrow for 2 weeks so I can't get to a doctor for something, and my allegra and zyrtec have done nothing for it.

I don't have it, and no in my family does, but I've read a lot about it because it is a sympton of Celiac disease.

What you do for it is STOP EATING GLUTEN. Also, check your shampoo, soaps and cosmetics. Many have wheat or wheat starch. Some have oatmeal which may be cross contaminated.

I had to throw out Tresemme shampoo, and quite a lot of cosmetics. Even some lipglosses have wheat starch in them.

I'd suggest asking this question on the forum I posted above: Glutenfreeforum.org

Everyone over there is very friendly and many may have experience with your problem and be able to give you a better idea of how quickly it could clear up and if it really is hd.

Good luck!

Mel

I haven't knowingly eaten gluten (though it's in everything as I've found out..) since the outbreak and I don't even remember having any gluten in the day before the outbreak. I've limited it for a long time. Until it goes away though, I'm desperate for something to stop the itching and more blisters! Though I've fasted today just to see if I could cut down the outbreak, I've still gotten more blisters! Checked all my lipglosses and such too- but I could be wrong since I've only just gotten used to all the whacky words used for milk, much less gluten stuff. My worry is that it might be in my prescription anti-histimine medications (for my other allergies) but I can't stop that or I'll be covered head to toe in a rash within a day.

Thanks for the forum! I'll check it out.

Hi all this post is a few days old but I'm now suspecting I have celiac diesease it seems to match my symptoms but my Dr thinks I have lupus I even have the lupus markers in my blood.
Can anyone tell me what tests they did to confirm the diagnosis and what kind of specialist you should see? Is it an allergist?

2much, your doctor thinks you have lupus and hasn't sent you to a specialist yet?!? You should be seeing a rheumatologist or immunologist to get a firm diagnosis. While lupus markers don't necessarily mean you have lupus, you ought to have a blood and chemistry panel done to ensure your immune system is functioning properly. Go back and talk to your doctor and see about getting a referral. Lupus is nothing to mess around with, but it can totally be managed.

Just an update on my situation guys- my allergist highly doubts I have celiac (because I "only" have skin reactions and gas after eating bread specifically- makes me feel like he really doesn't know all too much about the disease) but told me it would be fine to try a strict gluten free diet. That's not going so well though since I got on campus yesterday and there is ABSOLUTELY nothing I could eat except for a salad with marinaded chicken which I suspect had gluten in it. No real change yet except the DH mostly went away, but that could have been due to a high dose of pregnisone.

I started asking around my family because I know it's genetic, and it turns out my dad's ENTIRE family has IBS or similar symptoms as well as unexplained rashes. I told them to bring it up with their doctors as a possibility.

I was hoping 3FC would have a forum on this subject. I think I have celiac disease since I have felt so much better after eliminating all breads and baked goods from my diet about a year ago. I went on Atkins and could not believe the difference in my digestive system. What makes me think that I have it now is that my nephew and dad were both diagnosed with celiac disease about six months ago. Since I had already eliminated most of the offending foods, I could not be tested for it. My doctor feels that I should stay on a gluten free diet based on family history and my previous symptoms. She also suggested that I need to check prescription and over-the-counter drugs.
As far as diets, Atkins and counting calories seem to be the best choices.

Woodlily