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

33 in Ca Celiacs and DH

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33 in Ca Celiacs and DH Rookie
33 in Ca Celiacs and DH
Posted

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!

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Jestgar Rising Star
Jestgar
Posted

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

Bubba's Mom Enthusiast
Bubba's Mom
Posted

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! :o

sreese68 Enthusiast
sreese68
Posted

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 Enthusiast
eatmeat4good
Posted

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 Rising Star
Roda
Posted

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

JoshB Apprentice
JoshB
Posted

"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?

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kareng Grand Master
kareng
Posted

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 Rookie
33 in Ca Celiacs and DH
Posted
  • Author

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!

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

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      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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