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Does This Sound Like The Right Testing For Dh?

climbmtwhitney

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climbmtwhitney Apprentice
climbmtwhitney
Posted

Hi All,

My already gluten-free DS has been getting awful rashes on elbows, back of neck, sometimes above knees too. They're very infrequent--about every few months sometimes six months or longer. Perhaps when he is being accidentally glutened. I have Celiac and my son is gluten intolerant. So, I'm wondering if he is actually Celiac as well and getting DH. From my research the rashes resemble DH in every respect. Took him to an allergist and did full skin testing. Nothing turned up. She suggested a dermatologist to look for DH or something else. Did that. He said he would do 2 biopsies on the next rash. The 1st to look under a microscope and see if the visual is consistent with DH. Then, if so, do a 2nd biopsy to check for the antibodies. Well, we did the 1st biopsy and just got the results. The visual looks like eczema. So no 2nd biopsy. Since when is eczema super infrequent and painful (brings him to tears)? Hmmm.

My questions....Can you tell if something is DH with a visual only? Or do we need a new doctor and a antibody biopsy? Has anyone else had a doctor insist on a visual look only first?

I'd really appreciate some insight. Thanks!!!

Jillian

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mushroom Proficient
mushroom
Posted

I have never heard of a procedure to look at the lesion itself. Common practice is to look for the antibodies in the skin adjacent to the lesion. Of course, some doctors don't know this and biopsy the lesion itself thinking this is the way to do it :P As for doing both, this is the first I ever heard of it. Jestgar might know if there are any changes observable in the skin itself that indicate DH, but it would sure be news to me. If there were, why do the other biopsy?

RoseTapper Newbie
RoseTapper
Posted

I recently read on another thread that DH is a form of eczema.....maybe you should research that angle and challenge your doctor. To properly diagnose DH, the test DOES involve testing skin NEXT to the lesion. If the dermatologist doesn't know this, he needs to be informed (there's adequate literature on this that you can show him).

ChemistMama Contributor
ChemistMama
Posted

I recently read on another thread that DH is a form of eczema.....maybe you should research that angle and challenge your doctor. To properly diagnose DH, the test DOES involve testing skin NEXT to the lesion. If the dermatologist doesn't know this, he needs to be informed (there's adequate literature on this that you can show him).

DH is similar to excema, but in the case of DH we actually know what causes it and what part of the immune system is involved. Not only does your Dr. need to biopsy next to the lesion, he has to do a direct immunofluorecence assay, which not many labs do. HEre is a link to print and show the doctor. Do not put your son on a gluten-free diet until he is properly diagnosed.

Open Original Shared Link

Here's a link to a lab who says they do this type of assay:

Open Original Shared Link

climbmtwhitney Apprentice
climbmtwhitney
Posted
  • Author

Thanks for the replies! Appreciate it!

My son is already gluten free. Has been for almost 2 years because he's gluten intolerant. But, now we think he might be Celiac like myself and my dd. The rash is very infrequent, but very severe. So, we (and his allergist) are thinking it's when he's glutened by mistake. I found a new dermatologist and registered my son. Now I just need to (gulp.) induce gluten and see if the rash appears. If so, I know we have our answer even without the test. But, I will go ahead and get another biopsy for a written diagnosis.

The first dermatologist makes me furious! :angry: Super arrogant. Usually the arrogant ones are the ones who haven't a clue what they're talking about. Figures. <_< Seems most everyone here in northern California uses UCSF lab for this stuff. Hopefully they can run the immunofluorecence assay properly. I knew we needed that. I just wanted to double check before I put my son thru another biopsy. He showed everyone at school his stitches. Poor little guy.

Thanks so much for the links. They actually mention how far away the skin sample needs to be from the lesions. So helpful!

Jillian

ChemistMama Contributor
ChemistMama
Posted

Thanks for the replies! Appreciate it!

My son is already gluten free. Has been for almost 2 years because he's gluten intolerant. But, now we think he might be Celiac like myself and my dd. The rash is very infrequent, but very severe. So, we (and his allergist) are thinking it's when he's glutened by mistake. I found a new dermatologist and registered my son. Now I just need to (gulp.) induce gluten and see if the rash appears. If so, I know we have our answer even without the test. But, I will go ahead and get another biopsy for a written diagnosis.

Jillian-

After being gluten-free two years, the fluorecence test probably won't be useful, I'm afraid! After 2 years there isn't enough gluten built up in his skin, and unless it's a very new lesion, I have a feeling the test will come back negative. To get enough gluten, you'd have to have him eat gluten for about 4 weeks (!). This is what happenned to me, I was only gluten-free two months and the test was negative (done properly). He talked to someone in Dr. Fasano's Celiac clinic (U Maryland)and they said challenge 4-6 weeks. I didn't make it one day the pain was so bad.

If he's glutened by mistake, and you see lesions, you may want to try the iodine patch test, search the boards and you'll find it. Place a bandaid with the pad soaked in topical iodine near an active lesion. Leave it there as long as he can stand it, or 24 hours. If he has celiac the place where the patch is will be red and irritated and may even blister. That's proof he does have DH. HOwever, unless there's gluten in his system it won't work, and an accidental glutening may not even be enough, but it's something to try.

climbmtwhitney Apprentice
climbmtwhitney
Posted
  • Author

Jillian-

After being gluten-free two years, the fluorecence test probably won't be useful, I'm afraid! After 2 years there isn't enough gluten built up in his skin, and unless it's a very new lesion, I have a feeling the test will come back negative. To get enough gluten, you'd have to have him eat gluten for about 4 weeks (!). This is what happenned to me, I was only gluten-free two months and the test was negative (done properly). He talked to someone in Dr. Fasano's Celiac clinic (U Maryland)and they said challenge 4-6 weeks. I didn't make it one day the pain was so bad.

If he's glutened by mistake, and you see lesions, you may want to try the iodine patch test, search the boards and you'll find it. Place a bandaid with the pad soaked in topical iodine near an active lesion. Leave it there as long as he can stand it, or 24 hours. If he has celiac the place where the patch is will be red and irritated and may even blister. That's proof he does have DH. HOwever, unless there's gluten in his system it won't work, and an accidental glutening may not even be enough, but it's something to try.

ChemistMama,

Oh, I was afraid of that! I searched everywhere to try and figure out if you will still test positive after you've been gluten-free for awhile. Darn. We are still going to induce gluten next Sunday. We've got a week that's not too crazy so he won't be missing anything if he's miserable. I really hate doing it, but I'm quite sure it's the cause of his rash and we want an answer. We know that if he breaks out in the rash, it's Celiac, regardless of what the biopsy shows. He's already been extensively tested by his allergist, he has the genes, and tested as gluten intolerant. He also gets bad headaches and leg pains from gluten. Yep, feeling guilty already, but it's important to know. Thanks again for the help!

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