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Diagnosis Of Dh

rvp

By rvp
in Dermatitis Herpetiformis

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rvp Newbie
rvp
Posted

I was diagnosed 8 yrs ago with DH. The internist didn't take a biopsy because I had all the symtoms and the gluten free diet solved the isuues with the rash. I have followed the gluten free diet and have been rash free.

I recently had an outbreak(probably because I ate something I shouldn't have). I called my new primary care Dr. and ask if she could call in Dapsone for me, because I was really miserable. She asked if I ever took this before and I said I had several years ago. She refused to prescribe the drug. She said because I am anemic, this drug would make the anemia worse. So she recommended I see a dermetologist, which I did. She said she had to take a biopsy to tell what the rash was. She called back and said I do not hav DH and said to put on Clobetasol cream and it would cure it. She also said I can eat gluten because that it is not the problem. She said I have a simple dermatisis rash.

Since I have talked to her I have been very depressed. I am not sure rather to go to another Dr. or rest assured the biopsy is the only test that can verify the DH. My body is telling me to know that gluten makes me feel bad and presents the rash. But then have I become a hypercontriac over this issue?

Thanks

rvp]

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sugarsue Enthusiast
sugarsue
Posted
I was diagnosed 8 yrs ago with DH. The internist didn't take a biopsy because I had all the symtoms and the gluten free diet solved the isuues with the rash. I have followed the gluten free diet and have been rash free.

I recently had an outbreak(probably because I ate something I shouldn't have). I called my new primary care Dr. and ask if she could call in Dapsone for me, because I was really miserable. She asked if I ever took this before and I said I had several years ago. She refused to prescribe the drug. She said because I am anemic, this drug would make the anemia worse. So she recommended I see a dermetologist, which I did. She said she had to take a biopsy to tell what the rash was. She called back and said I do not hav DH and said to put on Clobetasol cream and it would cure it. She also said I can eat gluten because that it is not the problem. She said I have a simple dermatisis rash.

Since I have talked to her I have been very depressed. I am not sure rather to go to another Dr. or rest assured the biopsy is the only test that can verify the DH. My body is telling me to know that gluten makes me feel bad and presents the rash. But then have I become a hypercontriac over this issue?

Thanks

rvp]

Oh I am so sorry this has happened to you and I hope someone more informative than me responds! I fear this happening to my daughter some day although she was not diagnosed with DH. She has a doctor who is very supportive of the gluten free lifestyle for children with ADHD issues so he was pushing the "diet" anyway. Then she has these skin issues which are very DH'ish and the derm says may be DH but since we are going to do the diet anyway, let's not do the skin biopsy. We go gluten free, her skin totally clears up. She feels MUCH better being gluten free and has no desire to eat gluten (very telling for a 7 yr old).

So that said...can you get the file from the first doc who diagnosed you? If so, maybe then you can find another doc who will help? If you have been feeling well gluten free all this time, I think your intutition has got to be right on track. I don't feel a doctor who will make the statements that this doc has said with out all the data is really looking into your best interests and is just running on "the norm".

ang1e0251 Contributor
ang1e0251
Posted

I agree with the other poster who said get copies of your previous medical records. THe cause and effect of going gluten-free and your rash clearing up is no coincidence. If the biopsy wasn't done or read properly it can seem negative. I think it was irresponsible of the dr to say go eat gluten! This person appears to have a simplistic idea of celiac disease.

You could have a rash for another reason or it could be DH but the test was done wrong. How do you really feel? Do you think you have celiac disease or do you agree with the new dr? Go with your gut, ask for your previous records and make your decision from there.

rvp Newbie
rvp
Posted
  • Author
I agree with the other poster who said get copies of your previous medical records. THe cause and effect of going gluten-free and your rash clearing up is no coincidence. If the biopsy wasn't done or read properly it can seem negative. I think it was irresponsible of the dr to say go eat gluten! This person appears to have a simplistic idea of celiac disease.

You could have a rash for another reason or it could be DH but the test was done wrong. How do you really feel? Do you think you have celiac disease or do you agree with the new dr? Go with your gut, ask for your previous records and make your decision from there.

Thanks for the observation! I don't trust the dermatalogist who I saw. She was very "flip" and said the biopsy was gospel. It is a Doc I won't go back to.I felt better eating gluten-free foods. I can't go back and get my previous records because the guy died.

You have made me better!

Thanks

rvp

krystal Rookie
krystal
Posted
Thanks for the observation! I don't trust the dermatalogist who I saw. She was very "flip" and said the biopsy was gospel. It is a Doc I won't go back to.I felt better eating gluten-free foods. I can't go back and get my previous records because the guy died.

You have made me better!

Thanks

rvp

Even though he died, in the US it is required by law that these files be kept available. I would hunt down his widow/children and find out where those files went. If there is a doctor in the building he once was in, that doctor may have them in storage as well.

rvp Newbie
rvp
Posted
  • Author
Even though he died, in the US it is required by law that these files be kept available. I would hunt down his widow/children and find out where those files went. If there is a doctor in the building he once was in, that doctor may have them in storage as well.

Thanks for the info-I am going to contact our acsdemy of medicine to find out where the files are-I didn't know they would still be accesible.

Thanks!!

ravenwoodglass Mentor
ravenwoodglass
Posted

When the derm did the biopsy did she biopsy beside the rash or the rash itself? Derms that are not familiar with DH will often biopsy the rash and not the clear skin near it. That will result in a false negative. The NIH has a celiac awareness campaign going on and has some good info on DH, here is a link:

Open Original Shared Link

Also please don't rush for a dapsone script if you don't have to. Unless you are reglutening this flare should resolve and dapsone can have a lot of side effects.

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rvp Newbie
rvp
Posted
  • Author
When the derm did the biopsy did she biopsy beside the rash or the rash itself? Derms that are not familiar with DH will often biopsy the rash and not the clear skin near it. That will result in a false negative. The NIH has a celiac awareness campaign going on and has some good info on DH, here is a link:

Open Original Shared Link

Also please don't rush for a dapsone script if you don't have to. Unless you are reglutening this flare should resolve and dapsone can have a lot of side effects.

Thanks for this info -I saw where she took the biopsy and it was right into one of the blisters. The web site is very informative-thanks for telling me about it! They would not prescribe the Dapsone because they said since I am anemic, the drug would possibly cause more damage to the red blood cells. But being very strict with the diet the rash is gone. This in itself is eough for me to know I do have DH ot at least I am gluten intolerant.

Rebecca's mom Rookie
Rebecca's mom
Posted

I, too, had a rash that went away after going gluten-free (youngest daughter had a celiac disease diagnosis, so whole house got converted to gluten-free). It had been bugging me for 3 years, but since it didn't have the classic "itching" component, my derm didn't think that it was DH. She also told me that the test will very often give false negative results.

When our daughter was diagnosed with celiac disease, we all had a screen done, but none of us tested positive for celiac disease. I took it one step further - mostly because of resistance by my Dear Family to go gluten-free while away from the house - and had genetic and stool tests run on hubby and 2 daughters still living at home. All of them tested negative on the gene test (however, they all have 2 gluten sensitive genes), but showed antibody reactions to gliadin and tTG.

I had just assumed that I was gluten sensitive until we got the test results back on the rest of the family. I wasn't sure if I carried the celiac disease gene, as our youngest daughter has Down syndrome - I didn't know if the extra chromosome might somehow "enhance" the effects of gluten. When I went for my check-up this month, I asked my doctor to add a genetic test for celiac disease to my bloodwork panel. I got the results on Friday - I do, indeed, carry the Celiac Gene, which tells me that the rash that I had (it is almost completely gone now) was more than likely DH.

You may want to ask your doctor to run a GENETIC test for Celiac on you. That way, you will know for sure if gluten is an issue with you, and if you do, indeed, have DH (YOU already know that you do, but at least the evidence will be there in black and white.....). You will want to ask for the HLA-DQ Test for Celiac Disease - that will test for the presence of the DQ2 and DQ8 genes.

Teresa Koch

Fort Worth, Texas

Tallforagirl Rookie
Tallforagirl
Posted
You may want to ask your doctor to run a GENETIC test for Celiac on you. That way, you will know for sure if gluten is an issue with you, and if you do, indeed, have DH (YOU already know that you do, but at least the evidence will be there in black and white.....). You will want to ask for the HLA-DQ Test for Celiac Disease - that will test for the presence of the DQ2 and DQ8 genes.

Two points come to mind:

1. If you were gluten-free for a number of years, even with a dietary error provoking an outbreak, would there be enough antibodies in the skin to make the biopsy test come up positive?

2. A genetic test can tell you if you have the right genes to develop DH/celiac disease, but cannot provide certainty that you have either. It's just another piece of the puzzle.

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