Help!!! Could this be DH?

[Mary Anne Simpson]

Help! I have had an itchy rash that started on my lower legs about a year ago. I do not have the burning/stinging sensations that I see mentioned. Is that always a part of DH?? I get a bumbley rash that almost looks like eczema. If I were to itch it, a clear fluid comes out . The itch is literally unbearable. Along with that rash are separate pustules that are red. They have an almost pimple like quality, but they don't go away, they just last for weeks. They also itch intensely. The rash then moved to my elbows and forearms, it was also between my breasts for a bit and on my lower flanks. only the primary rash on my lower leg has the bumble blistery look. all the other areas are more like pimples, some single and others in groups. I went gluten free for 2 weeks and it seemed like the rash was actually starting to not itch. From what I read, I'm not sure that the itch usually subsides that quickly? It was still ugly, but the itch was subsiding. Then, last night my neighbor kept pushing her pirogi on me. They are polish dumplings, covered in a flour pastry. I woke up with a huge flare and as the day progressed I feel like I am losing my mind with the itch.

I went to a dermatologist about 6 times now. I mentioned DH, but the doc said the biopsy didn't show it. He did not do the biopsy in the manner recommended by all the DH forums. I live in the northern suburbs in Illinois. I am so afraid of going to a different dermatologist and getting the same song and dance. Should I see a dermatologist and get biopsied, or just go gluten-free. I just want to know what on earth is going on. I should also mention that although I don't have celiac symptoms, I do have looser stools than normal.I went on a boron supplement, and they are better, but it is still a bit of an issue. Im just wanting to know what is wrong, and dreading another summer with legs showing a battleground of discolored skin and ugly scars.

[GFinDC]

  On 2/21/2017 at 3:00 AM, Mary Anne Simpson said:

Help! I have had an itchy rash that started on my lower legs about a year ago. I do not have the burning/stinging sensations that I see mentioned. Is that always a part of DH?? I get a bumbley rash that almost looks like eczema. If I were to itch it, a clear fluid comes out . The itch is literally unbearable. Along with that rash are separate pustules that are red. They have an almost pimple like quality, but they don't go away, they just last for weeks. They also itch intensely. The rash then moved to my elbows and forearms, it was also between my breasts for a bit and on my lower flanks. only the primary rash on my lower leg has the bumble blistery look. all the other areas are more like pimples, some single and others in groups. I went gluten free for 2 weeks and it seemed like the rash was actually starting to not itch. From what I read, I'm not sure that the itch usually subsides that quickly? It was still ugly, but the itch was subsiding. Then, last night my neighbor kept pushing her pirogi on me. They are polish dumplings, covered in a flour pastry. I woke up with a huge flare and as the day progressed I feel like I am losing my mind with the itch.

I went to a dermatologist about 6 times now. I mentioned DH, but the doc said the biopsy didn't show it. He did not do the biopsy in the manner recommended by all the DH forums. I live in the northern suburbs in Illinois. I am so afraid of going to a different dermatologist and getting the same song and dance. Should I see a dermatologist and get biopsied, or just go gluten-free. I just want to know what on earth is going on. I should also mention that although I don't have celiac symptoms, I do have looser stools than normal.I went on a boron supplement, and they are better, but it is still a bit of an issue. Im just wanting to know what is wrong, and dreading another summer with legs showing a battleground of discolored skin and ugly scars.

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Welcome to the forum Mary Ann!

You are in a great place to get good advice and counseling.  The University of Chicago celiac center is world renowned for their research and programs.  You could contact them and probably get the help you need for a diagnosis of DH.  DH is a condition that only people with celiac disease get.  So if you have DH you have celiac disease.  Also, people with DH can tend to not test well on the blood antibodies tests.  The IgA antibodies are in the skin instead of hanging around the gut like they are supposed to.

Your rash sounds like DH To me, but I am just going on what I've read about it.

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[Mary Anne Simpson]

Thank you! I just requested an appointment. As much as I do not want my rash to be DH, I am at the point where i just want to know and go forward. (And stop itching!)

[Cjg]

Mary Ann, according to my dermatologist, on the IgA test DH will produce a false reading 50% of the time.  Listen to your body, if you felt better without gluten, become educated and make healthy choices.

[Jmg]

  On 2/21/2017 at 5:17 AM, Mary Anne Simpson said:

Thank you! I just requested an appointment. As much as I do not want my rash to be DH, I am at the point where i just want to know and go forward. (And stop itching!)

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Good luck Mary Anne

Remember not to exclude gluten from your diet in advance of any testing. That could lead to a false negative and make the whole process much more difficult. 

[squirmingitch]

Hi Mary Anne,

I'm going to repeat....

Do not give up eating gluten until all testing is completed!!!!!!

60% of those with dh test negative on the blood tests yet we do have the intestinal damage. It tends to be patchier in us though. We tend to have milder, fewer GI issues than celiacs who don't have dh. A dh biopsy, as you have read on here, is taken on clear skin adjacent to an active lesion.

Yes, dh can go away (stop itching) in 2 weeks of gluten free orrrrrrrrrrrrrrrrrrrrrrrrrrr it might take years. DH can come & go at any time, even if you're eating gluten -- it waxes & wanes; that is until the day it decides to stay & make every hour & day & month of your life miserable. Not everyone gets the stinging or burning or maybe I should say not everyone at every stage. 

A dx of dh IS a dx of celiac & no further testing is needed.

[Mary Anne Simpson]

Ok I went to a new dermatologist who was recommended by my gastro doc. He said she was familiar with dh. She told me that she thought that I had flea bites. I almost fell over. I have 2 dogs and a cat, but they are treated for fleas and they never scratch themselves. I asked her about a biopsy, and she said that since my prior biopsy (which was only one of the pustules) didn't show anything that was good enough for her. 

My rash is primarily on my lower legs. That's where the blustery part is. The blisters are not as often as the pimple like things that are either single or in groups of 3 or more. I have maybe 4 on my thighs, I had 3 on each flank and a few on my arm. My elbow/forearm is itchy, and so are the backs of my hands, but the dots are smaller and I can resist itching there a bit more. I did tell her it was amazing how the fleas would bite me in such a symmetrical pattern!

 

My gastro can't biopsy, but he wants me to do blood panel for celiac, and the genetic component, from Prometheus labs. Will this show if it is DH??!! Especially since I am having a very difficult time finding a dermatologist who isn't just doing cosmetic procedures.  

Do some foods affect you more than others? The night I ate my polish neighbors pirogis I itched like crazy. Last night I ate bread as I was going to see dermatologist, but then today itch is there but not all consuming. Although I itch more in the evening, I can usually fall asleep  it doesn't wake me. Is this normal?

so many questions...can't thank you all enough for your help!

 

 

[Jmg]

I don't know how easy it is for you to access University of Chicago? If you can go there it may be better as they're specialists, but if that's difficult I would have another go at the current dermatologist stressing that:

  On 2/21/2017 at 4:22 AM, GFinDC said:

He did not do the biopsy in the manner recommended by all the DH forums.

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DH is diagnosed by a skin biopsy, which involves removing a tiny piece of skin near the rash and testing it for the IgA antibody.

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Put the onus on the dermatologist to please explain how an improperly taken skin sample can be used to exclude celiac. The answer to this question will determine whether you need another doctor. 

Others have had DH mistaken for flea bites: 

 

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As a rule, fleas bite people around the ankles or at least in the lower parts of the legs. Flea bites on humans can also be seen on the arms, after you have held your pet.

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You may want to mention the location of your previous skin issues?

Put any and all reactions you think you have and other things which strengthen the case, ie stressing the symmetrical nature of the issue and ask point blank for celiac to be excluded definitively by biopsy. 

Be confident and assertive, its your health and you need answers. 

 

[squirmingitch]

  On 2/24/2017 at 5:40 AM, Jmg said:

I don't know how easy it is for you to access University of Chicago? If you can go there it may be better as they're specialists, but if that's difficult I would have another go at the current dermatologist stressing that:

Open Original Shared Link

Put the onus on the dermatologist to please explain how an improperly taken skin sample can be used to exclude celiac. The answer to this question will determine whether you need another doctor. 

Others have had DH mistaken for flea bites: 

 

Open Original Shared Link - 

You may want to mention the location of your previous skin issues?

Put any and all reactions you think you have and other things which strengthen the case, ie stressing the symmetrical nature of the issue and ask point blank for celiac to be excluded definitively by biopsy. 

Be confident and assertive, its your health and you need answers. 

 

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Great, perfect reply jmg!

[Mary Anne Simpson]

I do have another question regarding dh. I mad an appointment in march with a very good dermatologist in Chicago, btw. The part of my skin that feels bubbly and bumbly is only on my legs and possibly the backis of my hands. My forearms and elbows itch but I am able to resist scratching. I can also resist scratching what I call the satellite "pimples" that are either in small groups or singles. The bubbly (but not really a blister but more of a submerged blister) is the portion I simply cannot resist itching, unless I'm in Benadryl. That is the part that is sometimes awful and then mysteriously is sometimes not awful. I never have burning or stinging, just mind numbing itching. I have also had about 10 years of looser than normal stools, but not even close to diarrhea. Recently this has gotten better. I am eating gluten because of previous posts. The rash is not necessarily worse when I do. Do these symptoms still fit in to possible DH? Should I be blood and gene tested as well, or should I cut to chase and do only skin? Does it have to be close to the bubbly rash that comes and goes?