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I Need Support! Not Sure What I Have Yet.

ItchyAmber

By ItchyAmber
in Dermatitis Herpetiformis

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ItchyAmber Newbie
ItchyAmber
Posted

Hi guys, I am here because I just found out about HD this past Friday. I have had Gastric issues (Mild, mostly constipation) my entire life... i was told at 12 it was IBS. Again at 15, 18 and 20, I was told the same thing by 3 or 4 different Dr's.

Since 2003, I have been dealing with the most intense itch and rash. I scratch until I bruise and bleed. It is mostly around my stomach, in my hair and on my neck, and around my pubic area. I feel like Im losing my mind because of the constant pain, burning and itching. It starts as tiny tiny blisters, that turn into a rough, crusty red patch once i began to scratch it. My thighs are covered in it. :o Since I had twins in Dec. of 05, my pubic area has been covered in the rash... which makes life miserable.

It has come and gone, and moves aroung my body about once every 6 months. This past Friday, I saw a Gastro Doc, because a friend mentioned Celiac to me and told me to go see this Dr. He actually took a lot of interest in my issues and sent me today for a battery of tests to rule out Celiac. I should know something by friday. I am terrified that it's NOT celiac or DH, because then i'll be back where I started.

In December, I saw a holistic Dr. that told me my rash looked like a Gluten allergy and she told me to go completely off of Gluten. I had no idea what i was getting into. I am here because I wanted to find out what other Dh rashes look like and if this even sounds like what other people suffer. I am tired of being diagnosed with Exzema, hives, psoriosis, stress... the best of all, a parasite! No cream in the world, no matter what the concentration of steroid, or antihistimine has ever helped.

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Teku Apprentice
Teku
Posted

Open Original Shared Link

These pictures here look exactly like what my DH looks like when I break out. I only break out when I have gotten some gluten into my system. I had some repeated glutenings over the course of a week this past December (16-21st) and by Christmas my entire arms,legs, belly, back, and behind looked just like these photos. It was the worst breakout I have had since going gluten free 4 years ago! But before I went gluten free I mostly got it on my head, neck, the crook of my elbow, and on my palms (just like in the photo!).

Have you tried the gluten free diet yet? If not, then don't until you finish testing.

I was diagnosed with IBS at 16 after a childhood of off and on stomach issues that was everything from frequent aches to diarhhea and alternating constipation. I had a little bit of a remission of symptomsd for a few years and the symptoms came back with a vengeance after I had my first baby, and got progressively worse with each pregnancy. I didn't get the DH until I had my daughter. She also gets DH when she gets glutened, but it is usually mild. She didn't get it before going gluten free when she was 4, but has gotten since when she gets glutened by a large amount of gluten. My boys don't get DH, and they also don't have the DQ2 Celiac gene, but they have other gluten intolerance genes. My daughter and I have the DQ2 Celiac gene.

gf4life Enthusiast
gf4life
Posted

Oops, I didn't realise that my son was still logged in when I posted that last message. It was from me, gf4life aka Mariann, not from Teku aka Ben!

ItchyAmber Newbie
ItchyAmber
Posted
  • Author

No problem, I caught on! thanks so much. When I read about your pregnancy, and how it got worse after, I almost cried. I did so well while pregnant, a few breakouts here and there, but I felt really good (I now attribute this to the fact that I couldn't stand pasta or bread while pregnant!). Two weeks after the birth of my twins I broke out from my belly button to my thighs, and 13 months later, I am still dealing with the same breakout. I feel so helpless and miserable.

Don't worry, Im not going totally gluten free until my tests are done, so they come back accurate! I ate gluten all weekend because I knew my tests were today. I am itching so bad, i can't stand for my poor husband to touch me. My valentines is going to SUCK!

wowzer Community Regular
wowzer
Posted

Amber, I sure hope you get to the bottom of this. I do know how miserable it is to itch. And to have 2 new babies to deal with on top of it. Keep us posted on your results. Good luck

Guest starmiller
Guest starmiller
Posted
Amber, I sure hope you get to the bottom of this. I do know how miserable it is to itch. And to have 2 new babies to deal with on top of it. Keep us posted on your results. Good luck

Gosh Amber, I feel badly for you. Let us know how your tests come out. You'll be in my thoughts.

Since going completely gluten-free for two months now, my attacks are not all the time, just when I eat and for a short time (an hour). I'm not sure, but I think while the villi are healing, my body still reacts to any type of digestion. The attacks are minor but happen frequently. How long does it take to heal once going gluten-free, dairy-free and iodine-free? Ugh! Does the itch ever completely go away?

starmiller

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