New Diagnosis: Dh Without Celiacs, After Being Diagnosed With Both For 20 Years

[33 in Ca Celiacs and DH]

Does anyone else have DH and negative for Celiacs? I was diagnosed With Celiacs and DH for the last 20 years.. Although I do have the bloating, constipation, achy joints, iron deficient.. I am not/have not been gluten-free since 2000 (for 6 months).

A new Dr recently suggested that I have the blood work to see if I truly do have Celiacs, and to our suprise, the test came back negative.

I do, however, absolutely have DH. I take 100 mg of Dapsone daily and if I miss a dose by just a few hours, I get blisters on my face, shoulders and under my butt.

I am having a gastro-intestinal biopsy Monday.

Does anyone else have DH but not Celiacs? My Dr said it is possible but that goes against everything any other Dr. Has told me?!?!

Please help clarify... Deeply confused!

[Jestgar]

DH IS a diagnoses of celiac disease. Your doctor is misinformed.

[Bubba's Mom]

I have Celiac and my blood test was negative. My diagnoses was done via biopsy, just as yours was diagnosed by your DH. The thought that you can eat gluten is very harmful!

[sreese68]

Unfortunately, the false negative rate for bloodwork is much higher than what a lot of doctors think. My own GI said it had an accuracy rate of 98%! (which is quite wrong! And he was wrong about other details of celiac.) Good thing my neurologist said that he sees false negatives all the time and to pursue things further. Anyway, I had negative bloodwork, but I definitely have celiacs.

[eatmeat4good]

Peter Green wrote Celiac A Hidden Epidemic and in it he says DH patients often test negative for Celiac, however they are often the most sensitive to cross contamination and have a higher incidence of lymphomas and other cancers secondary to Celiac. I wouldn't believe your Dr. on that one. A negative blood test does not mean you don't have Celiac. A diagnosis of DH DOES mean that you have Celiac.

[Roda]

I agree with the other posters. If you have a diagnosis of DH then it is a diagnosis of celiac.

[JoshB]

"Accurate" isn't very well defined. Let's say the "blood test" in this case maybe EMA-IgG is very specific but not very sensitive. If it says you have celiac then you have it. Unfortunately there's a 10% or so chance that if you have celiac disease it might not tell you about it.

In any case, it's all the same in the end, right? You can't eat gluten. What's the point in arguing with your doc? Is there something riding on the celiac disease diagnosis over the DH diagnosis?

[kareng]

Have you thought about eating gluten-free to clear the DH up? It usually gets rid of the DH. No reason to take that medicine. Seems irresponsible of the docs to keep prescribing medication all these years.

[33 in Ca Celiacs and DH]

Thank you for all of the insight.. I was hopeful that I didn't have Celiacs as I have never been very good about sticking to the diet and more importantly, it seems there is so much more at risk with Celiacs (specifically Cancer, miscarriages (I've had 1) and/or fertility). I am not symptomatic other than bloated belly/gas and constipation. I do get blisters within 30 minutes of not taking Dapsone at my normal time... So it seems it's a no- brainer that I have DH.

I was thinking (probably not smart), that there was a possibility that I wouldn't have to watch what I eat as long as I continue to take the dapsone.

On another note, does anyone else take Dapsone for DH? I haven't found much research on the risk/harm that Dapsone causes after long periods of time. Any insight on this would be great!