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Gfgoddess

How Common Is It To Have Dh And Gi Symptoms?

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I had severe gastrointestinal symptoms when i was young but have been gluten free and symptom free since i was 14. I am now 22 and decided to try gluten again after 8 years to see if anything has changed. Not only did all my symptoms come back but i also got a rash all over my arms (looks like tons of pimples) that i suspect is DH. How common is it to have both?

Also, i have never been tested for celiac while on gluten and i am hoping that the rash will allow an easy diagnosis. How were u diagnosed?

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I'm sort of new at this myself but from all accounts the dh makes it HARDER for a diagnosis.

A) You haven't had gluten for 8 years so your villi are most likely healed & normal. So that will be difficult for an endoscopy.

B) Celiacs with dh tend to have less GI damage & less GI symptoms than Celiacs without dh.

C) Getting a positive biopsy of dh is frustrating to say the least. Even when done correctly by an experienced dermatologist who has performed dh biopsies many times; it returns a 37% false negative.

D) It is estimated that 25% of celiacs will have dh also.

Hope this helps. I'm sure others who are more informative will be on soon to add to this.

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Thanks for the help. I have a dermatology appt on friday and I guess I was just really hoping that the rash would provide undeniable evidence of celiac. It was my understanding that they could diagnose celiac from a dh rash. Is this possible or can they only tell you whether or not it is dh? (if that makes sense)

I cannot tell you how much crap i have gone through with doctors and with family members because of the fact that i have no official diagnosis. So far as they know, im this crazy lady making all this up for... attention? Sympathy?

I just want some answers after all these years. I will have to be "glutened" the day of the appt and will be very ill. Hope its worth it!

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Your situation is exactly how my DH developed.

I'd been eating relatively gluten free for years due to gastrointestinal symptoms and decided to eat 'normally' for a few days because my symptoms had abated and I didn't want to be a bother where I was visiting.

And suddenly I had a DH rash, that took me several months to identify.

So far as I know, pretty much the ONLY way to be diagnosed coeliac is if you are eating quite a lot of gluten, so that the immune response can be detected. Even so there is a high probability of a false negative. Sometimes a diagnosis is possible if you respond to a treatment with Dapsone.

But for many of us the thought of eating gluten is so abhorent, we are happy to know in our own minds that we are coeliac, and go from there.

I understand your frustration with doctors, most of those I have encountered have been unhelpful or obstructive. But I have had a lot of support from friends and family members.

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I had severe gastrointestinal symptoms when i was young but have been gluten free and symptom free since i was 14. I am now 22 and decided to try gluten again after 8 years to see if anything has changed. Not only did all my symptoms come back but i also got a rash all over my arms (looks like tons of pimples) that i suspect is DH. How common is it to have both?

Also, i have never been tested for celiac while on gluten and i am hoping that the rash will allow an easy diagnosis. How were u diagnosed?

Ask for a DH biopsy. Ask for two, it will up the odds of a + result.

Worst thing is it is negative. But don't let the derm talk you out of the test by saying its something else. Insist on it.

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Hi!

I have DH and GI Symptoms!

Reactions actually started with just the DH.

After I started eating gluten free, I developed GI symptoms when I would mistakenly ingest gluten.

I read that this could be because while eating gluten your body builds up a bit of an immunity, but that once you stop the immunity goes away and you react more severely.

I also read that your body resets itself after 7? years and that if you can eat completely gluten free for that length of time, your body will "forget" it was allergic and you will be able to eat gluten again. Looks like this is maybe what you were trying? Clearly this is not the case!!!

BUT now I am thinking I may have a secondary allergy that is causing different reactions. Sometimes I get very sharp stabbing pains in my gut almost immediately after eating something, other times my lips start to itch a couple of hours afterwards and the rash used to take days to show up but now will flare up within a couple of hours of eating something as well.

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Hi!

I have DH and GI Symptoms!

Reactions actually started with just the DH.

After I started eating gluten free, I developed GI symptoms when I would mistakenly ingest gluten.

I read that this could be because while eating gluten your body builds up a bit of an immunity, but that once you stop the immunity goes away and you react more severely.

I also read that your body resets itself after 7? years and that if you can eat completely gluten free for that length of time, your body will "forget" it was allergic and you will be able to eat gluten again. Looks like this is maybe what you were trying? Clearly this is not the case!!!

That may work for an allergy but Celiac isn't an allergy. The world we live is full of gluten. Maybe if you could live in a bubble, you could be certain you never got any tiny crumb of gluten.

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With regard to the DH biopsy itself, make sure the dermatologist knows what he's doing. He/she should take the biopsy from CLEAR skin NEXT to a lesion and NOT from a lesion itself. Otherwise, the biopsy will definitely result in a false-negative test.

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