gr8,

With the DH I experienced after going GF and apparently getting glutened, I had a rash on both ankles, both elbows and both thighs right above the knees.

My daughter who was biopsied years ago because of a rash on both knees only got a diagnose of "well, it isn't lupus....It is some kind of dermatitis, looks a little like impetago but have never seen that in winter" (plus she was 14 at the time so lets get real). The doctor and I are sure that was DH with all the other symptoms she displayed but, they just weren't looking for Celiac DH.

What you usually look for is the symptoms show up in similar areas on both limbs etc.(bi-lateral) Many times you can tell you are going to get DH because it will itch like crazy before you can even see the rash.

Patricia,
My daughter had the scratch tests done a year ago because she had so many migraines, sinus infections and was always congested. She lived in an old house and had cats so she figured she would definitely have those show up positive. Guess what, she tested negative to everything including wheat.

Finally she was tested for Celiac a few months ago and her Ttg's were very positive. Since the Ttg tests are highly specific and sensitive and her mom is a gold star celiac she knew she also had the disease and went gluten free.

I also had and am still having a hard time totally recovering from the disease. I have been gluten free religiously since June 2005. My Ttg's are still 18 which I think are a little high for someone who never eats gluten. My last biopsy in February showed some scalloping but all biopsies were negative. What has helped to get my numbers down to 18 was eliminating the only real processed food I was eating which was a certain cracker that most gluten free people said was safe. Once I eliminated the crackers my numbers dropped but the problem is I also was on hospital steroids and pill steroids for about 2 weeks about the same time....so I am not sure which caused the drop and I am too afraid to bring the crackers back into my diet.

So, if you are eating any GF foods and still crashing, I would recommend eliminating anything processed for a few weeks and stick to safe foods such as meats, fruits and veggies and stay away from anything white.

Knowing your Test numbers would be helpful. Not only Celiac tests but did anything else show up in your CBC, liver panels etc that might also point to malabsorption problems.

Llonghair