TexasLady54

I just had my biopsy yesterday and I'm having quite the flare as well.

I'm new on the Forum and had biopsy yesterday to confirm DH but I am RH negative.

Hi,

I have severe dermatitis herpetiformis and have had it come and go for the past 4 years. I'm an East Texas girl who loves her fried chicken and gravy, chicken and spaghetti casserole, etc. but the truth is, I suffer from other symptoms besides DH.

Your list has made me more determined to stick to a gluten-free lifestyle. (It ain't easy.)

I have itchy, dry, flaky skin all over my body and scalp.

Thank you for the motivation. I need it.

I have one area along my right index finger used to get intensely itchy and would sometimes have a blister or two. It baffled a doctor because there is no reason for me to have herpes whitlow and neither of us thought of DH. I'm pretty sure it's DH because it hasn't blistered in a few years now and when I got stuck eating CC'd food over a weekend trip it started itching intensely.

I have had Dermatitis Herpetiformis off and on again for about 10 years or longer. It does get blistery and insanely itchy. I have never had the perfectly symetrical pattern but maybe one elbow, one finger, one knee and then other times it would be both elbows, both knees. It's just a crazy disease. It waxes and wanes though and sometimes I can go for a period of weeks or months without a breakout. I have scratched until I bled. Now when the itchy patches come, I use an Rx from my Dermatologist, Pramazone lotion (which actually dries up the blisters) given a few days time.

I am a woman in Texas (a flight attendant) who is in the battle of a lifetime with Celiac, also Dermatitis Herpetiformis with my skin.

I would love some help/advice/coaching from someone. I have absolutely no idea what things are good to eat and what things are bad. Sure, I know not to eat wheat, oats and barley (bread), but so many things have these in them - what to do?

I will give you a brief description of what I am like now. I was 135 lbs. last year, and I am 168 pounds now. I have a very large, tight stomach and gas. I also think I have a severe case of IBS. I have alternating constipation and "almost" diarrhea. I have fatigue, headaches, brain fog, aches and pains, and obviously osteoporosis. (I fell down my stairs in January and shattered my ankle. It was a horrible break - a trimalleolar fracture.) I can eat just a little bit and then my stomach feels full, tight and bloated even though I am still hungry! I look like I take steroids and feel fat and round. Will I ever get my slim stomach back again?

For the past 4 years, I have had a skin condition with blistering that the Dermatologist thought it was dermatitis. Now I have been told that it is Dermatitis Herpetiformis. It is the absolutely worse stinging than I have ever had without being bitten. It is a maddening itch, scabbbing, itching, scabbing....on and on.

Mainly, I want to get rid of the bloated belly. Please, if anyone has any advice, share it with me. I am absolutely not overeating. I am spacing very small meals throughout the day, and still the bloating continues. I have had a Gynecological checkup and all is well.

Thank you for all of your help!

Jan Hall