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Dh Without Gi Symptoms

zippitty5

By zippitty5
in Dermatitis Herpetiformis

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zippitty5 Newbie
zippitty5
Posted

I have been suffering from any extremely itch rash for two months. After much online research it sounds like it may be dh, however I do not have any other symptoms of celiac. I am 48 and never had arash like this before. 2nd appointment tomorrow with a dermatologist. Last ointment prescribed didn't help. Should I insist on biopsy/test for sh? Can dh show up at my old age. Been eating gluten my whole life without a problem. I'll try to start eating gluten free. Anything for some relief. Thanks all for you help.

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ravenwoodglass Mentor
ravenwoodglass
Posted

I had DH for years when I was a child without any GI symptoms to speak of. Do ask the doctor to biopsy but make sure he is looking for DH as he will need to biopsy the skin next to an active lesion and tell the lab that he is looking for DH as they have specific lab tests that need to done. It wouldn't be a bad idea to go ahead and ask for a celiac panel blood test also. Do not go gluten free until you are done with any celiac related testing.

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itchy Rookie
itchy
Posted

My DH showed up at age 58. But I had mild symptoms of coeliac from about 47, which were undiagnosed.

I agree with ravenwoodglass.

I would add that if the test comes back negative, that doesn't mean you don't have DH, because the test has a high rate of false negatives.

The test will not work unless you are eating your normal, gluten containing diet.

After the test you will either have a positive diagnosis of DH, (meaning you can look forward to eating gluten free for the rest of your life), or a negative result.

If it is negative, you will still have miserable rash and no diagnosis. At that time you might want to go gluten free anyway, and see if it brings relief. (Many of us have gone through this option).

Full relief can take a few weeks, or even years.

Good luck.

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zippitty5 Newbie
zippitty5
  • Author
Posted

Thanks for the quick replies. What an awesome community. I ahve been eating gluten free for 2 days and today is my dermatologist appointment. Do you think just two days of no gluten will affect the test results. If eating gluten free offers me relief, is a positive diagnosis really necessary as it seems the only help for DH or celiac is gluten free.

Thanks for helping to educate me.

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squirmingitch Veteran
squirmingitch
Posted

The only GI symptom I had was bloat ~~~ which could be attributed to almost anything so...... But once I went gluten free it got MUCH better & then I found out through this forum that soy could be a contributor. Soy gone, bloat gone.

I was 54 before my 1st major, big bad, whopper of an outbreak of dh happened. Up until that time I had 1,2,3, tiny blisters at a time which I knew better than to even mention to a Dr.

No, IMHO a positive diagnosis is not necessary as the only help for celiac/dh is going gluten free.

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zippitty5 Newbie
zippitty5
  • Author
Posted

Thanks again. I told dermatologist to test for DH and she willingly did a biopsy. I'll know the results in a few weeks. All of you Celiac sufferers on this forum are brave and generous with your responses. Thanks again.

I had breast cancer 11 years ago and there was a website similar to this one that got me through it. I love how the internet allows us all to communicate and help eachother.

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squirmingitch Veteran
squirmingitch
Posted

You are SO right zippitty! My hubby had bladder cancer & ACOR has a website with all the different cancer types & forums like this for each. We would have been lost without it.

And I would have been lost & struggling without this site.

And congratulations on being a survivor! You got through that; you will be able to get through this. It can't be as tough as defeating cancer.

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itchy Rookie
itchy
Posted

Quite a large percentage of us have no formal diagnosis.

I went to a GP with my rash and by the time I had an appointment with a consultant I was convinced by photos on the internet, etc., that I had DH. I immediately went gluten free and in a few days my GI symptoms were gone, and the DH improving.

The consultant agreed with me, but by that time there was no hope of a diagnosis by test, so I didn't bother.

If you are getting better there is no need for a test, IMO. Few of us would willingly gluten ourselves just to have a piece of paper telling us what we already know.

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Avalon451 Apprentice
Avalon451
Posted

My 16 y.o. had NO gut issues when she was diagnosed with DH by her dermatologist. We thought we were looking at psoriasis, celiac wasn't even on the radar. She was seeing the derm for her acne issues (now clearing up amazingly on the gluten free diet) and mentioned as an aside about the itchy rash on her knees, elbows and back.

She had a way positive blood test, then a positive endoscopy. Even though she had no gut issues, there is damage to her villi.

Hope your mystery is solved soon!

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