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Does This Sound Like Dh?

beansmom

By beansmom
in Dermatitis Herpetiformis

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beansmom Newbie
beansmom
Posted

Hi. I have had some random symptoms that led me to be tested for celiac. The blood test was positive for IgA anti-gliadin antibodies but negative for the transglutaminase antibodies. Iwas told that it is common to have the anti-gliadin antibodies and b/c the other test was negative, I did not have celiac and did not need to pursue further testing.

My most annoying symptom has been small blisters in my mouth. Now, however, for the past month I have had randomly placed small pimple like bumps that itch like crazy! They have been mostly on my back, stomach and legs. Never on elbows or knees (most pictures I've seen show these to be common). They are usually not in groups either.

I called a dermatologist to make an appt but they didn't take my insurance and then my resolve to figure this out went out the window :blink:

I'm curious to hear what you all have to say. Thanks in advance!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Are you gluten free? Had you been gluten free or gluten light before the tests came back and they told you that you didn't need the diet?

sugarsue Enthusiast
sugarsue
Posted

It's my understanding that if you get a Gliadin antibody test positive (IgA or IgG) this means that you are gluten intolerant and should consider yourself at least non-celiac gluten intolerant and should not eat gluten. This is from Steven Wangen's book Healthier Without Wheat. My 6 yr old fell into this category and is much improved after removing gluten.

beansmom Newbie
beansmom
Posted
  • Author

I am not gluten free. I don't want to be if I don't have to be. As you all know it would be extremely difficult as I am a mom of 4 and have a busy life - where would I be without fast food??

ravenwoodglass Mentor
ravenwoodglass
Posted
I am not gluten free. I don't want to be if I don't have to be. As you all know it would be extremely difficult as I am a mom of 4 and have a busy life - where would I be without fast food??

You have a postive blood test and it sounds like you also have DH. What were the issues that made you get testing in the first place. I thought I could never live without the convienence of fast food also. I soon learned that the difference in health and mood are well worth the trouble. The choice is yours of course, just don't wait until you have a signature that looks my mine before you get on the diet. Also if you are celiac or gluten intolerant chances are that your children will also be effected. Celiac is much more than just a gut thing it can effect learning and moods as well as growth and development. I would give anything to have been diagnosed with a blood test before my body became permanently damaged by this disease. The choice however is yours alone to make.

sugarsue Enthusiast
sugarsue
Posted
I am not gluten free. I don't want to be if I don't have to be. As you all know it would be extremely difficult as I am a mom of 4 and have a busy life - where would I be without fast food??

I avoided trying the diet for 2 years until we got a positive test for my 6 yr old. Our doctors were suggesting it but I was afraid. I didn't think I could manage it. How could I control all their food and they were ADDICTED to wheat. Now, it seems like the easiest thing in the world and so worth it.

You have 4 children and a busy life. As a gluten intolerant person, you will feel so much better and have more energy for your children. You can find options at fast food (we still eat at McDonalds every week and the kids have adjusted to what they can and can't eat). I am a single Mom and never thought I could do it. The help of the people on this board has been invaluable and I keep learning new things.

HUGS!

beansmom Newbie
beansmom
Posted
  • Author

Thanks for all the replies and support. I still would like to have a formal diagnosis. I don't have GI symptoms for the most part. I went to an oral surgeon a while back. Of course I had no blisters in my mouth at the time... So should I still try to see a dermatologist? What if I don't have any itchy bumps when I go???

I really appreciate everyones's help.

p.s. the lab that did my bloodwork said that the anti-gliadin antibody is basically a worthless test - I was so glad to hear that and still have to pay for it!! But it does seem like no one really knows what it means on it's own... Except for here where everyone thinks it means I should go gluten free!

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Atzu Newbie
Atzu
Posted

Hi Again...to All.. ;-) First, just got back from Derm Doc. at Kaiser. Interesting for me.. will share:

Have had skin problems all life. 6 Months ago, started symptoms of Herpetiformis, 4 weeks ago found out about connections with Wheat and Gluten in a causual conversation with a friend. Found this Website. Read, Viewed Pic's. Changed diet that day to no wheat, since that time all symptoms ( bilaterial presentation of red pustuls) have ceased to appear. The spots, dots, bite looking areas are all healing, as well as a general body rash I have had for years.

Presented all this to Dr. this morning. His responce was to eat wheat again, and try to re-establish the cause... hmmmmm.......OK..... wondering where that really takes me as a patient... Frankly.. not very far. So I can push for tests.. or ....really just do this myself. He gave me a new script for ( Betamethasone Dipropiaonate ) which will help with the new breakout. And call him if gets worse.

The interesting part about this .. is my syptoms have almost completely disappeared, you can still see some slight scaring but, light and slight.

For me. The change of diet has been a huge benifit, my skin starting to clear and feeling better is a wonderful thing.

I will experiment now... and get some feed back and let everyone know...

Many Thanks... again.... Knowledge is Power.... ;-)

Don.

sugarsue Enthusiast
sugarsue
Posted
Thanks for all the replies and support. I still would like to have a formal diagnosis. I don't have GI symptoms for the most part. I went to an oral surgeon a while back. Of course I had no blisters in my mouth at the time... So should I still try to see a dermatologist? What if I don't have any itchy bumps when I go???

I really appreciate everyones's help.

p.s. the lab that did my bloodwork said that the anti-gliadin antibody is basically a worthless test - I was so glad to hear that and still have to pay for it!! But it does seem like no one really knows what it means on it's own... Except for here where everyone thinks it means I should go gluten free!

Yes, I would go to a dermatologist. I would try to find one that is recommended by your local celiac group so you will know you are finding one that is familiar with DH, although I would hope they all are but you never know.

Regarding the lab's response, I got the same thing from my dd's neurologist and he did not recommend gluten free. Her pedi however told us about the non-celiac gluten intolerance and boy am I glad he did! Good luck to you!

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