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Help - Is This Dh?

rebeccag

By rebeccag
in Dermatitis Herpetiformis

Recommended Posts

rebeccag Newbie
rebeccag
Posted

Hi all,

I have been following a gluten free diet for the past three months. Blood tests came back negative for celiac, but my doctor recommended I try it to see if recurrent bowel issues, etc. clear up. So far, things are better - not 100% by a long shot, but better.

What is worse, though, is my skin. I've always had some issues with my skin, especially around my mouth area, but in the last two years it's gotten just stupid. I just turned 35 and really don't want to deal with this stuff anymore!

Anyway, I've been taking pictures as the rashes have come up. I will deal with it for about a month or two, then have a few weeks off, and then a new batch. The last really bad one, in November last year, had me on antibiotics (which I had a bad reaction to) and things kind of cleared up, but it took a looong time and I've been having recurrent problems since.

I'm thinking this might be DH but it does not generally itch too much. I just get large hard bumps that are very red, feel "blistery" and burn quite a bit. They do weep and crust, and right now the only thing that is helping is alternating between Polysporin and Calamine lotion. I know I need to go to the doctor but I was hoping someone who is suffering from this and has been diagnosed could recognize this for what it is.

I have also gotten small very itchy blisters on my fingers and hands, followed by excessive peeling of the skin, 2 or 3 times a year since I was 12 years old. Not sure if it is related??

Pictures attached - thanks for any help! (I hope the attachments work, otherwise just follow the links - thanks!)

aug9.webp

nov1.webp

- Rebecca

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sedunk Apprentice
sedunk
Posted
Hi all,

I have been following a gluten free diet for the past three months. Blood tests came back negative for celiac, but my doctor recommended I try it to see if recurrent bowel issues, etc. clear up. So far, things are better - not 100% by a long shot, but better.

What is worse, though, is my skin. I've always had some issues with my skin, especially around my mouth area, but in the last two years it's gotten just stupid. I just turned 35 and really don't want to deal with this stuff anymore!

Anyway, I've been taking pictures as the rashes have come up. I will deal with it for about a month or two, then have a few weeks off, and then a new batch. The last really bad one, in November last year, had me on antibiotics (which I had a bad reaction to) and things kind of cleared up, but it took a looong time and I've been having recurrent problems since.

I'm thinking this might be DH but it does not generally itch too much. I just get large hard bumps that are very red, feel "blistery" and burn quite a bit. They do weep and crust, and right now the only thing that is helping is alternating between Polysporin and Calamine lotion. I know I need to go to the doctor but I was hoping someone who is suffering from this and has been diagnosed could recognize this for what it is.

I have also gotten small very itchy blisters on my fingers and hands, followed by excessive peeling of the skin, 2 or 3 times a year since I was 12 years old. Not sure if it is related??

Pictures attached - thanks for any help! (I hope the attachments work, otherwise just follow the links - thanks!)

aug9.webp

nov1.webp

- Rebecca

Greetings Rebecca,

Oh I feel your pain. I have had severe eczema for 4 years. My dermatologist thinks I have DH, I was told that is usually on your elbows and the lower section of your back. I have had really bad eczema on my toes for about 2 years and just found out that I am allergic to almonds and gluten. I have also been told that there may be more food allergies for me. I am going to see another doctor tomorrow for more food testing.

Sara

sedunk Apprentice
sedunk
Posted
Hi all,

I have been following a gluten free diet for the past three months. Blood tests came back negative for celiac, but my doctor recommended I try it to see if recurrent bowel issues, etc. clear up. So far, things are better - not 100% by a long shot, but better.

What is worse, though, is my skin. I've always had some issues with my skin, especially around my mouth area, but in the last two years it's gotten just stupid. I just turned 35 and really don't want to deal with this stuff anymore!

Anyway, I've been taking pictures as the rashes have come up. I will deal with it for about a month or two, then have a few weeks off, and then a new batch. The last really bad one, in November last year, had me on antibiotics (which I had a bad reaction to) and things kind of cleared up, but it took a looong time and I've been having recurrent problems since.

I'm thinking this might be DH but it does not generally itch too much. I just get large hard bumps that are very red, feel "blistery" and burn quite a bit. They do weep and crust, and right now the only thing that is helping is alternating between Polysporin and Calamine lotion. I know I need to go to the doctor but I was hoping someone who is suffering from this and has been diagnosed could recognize this for what it is.

I have also gotten small very itchy blisters on my fingers and hands, followed by excessive peeling of the skin, 2 or 3 times a year since I was 12 years old. Not sure if it is related??

Pictures attached - thanks for any help! (I hope the attachments work, otherwise just follow the links - thanks!)

aug9.webp

nov1.webp

- Rebecca

sedunk Apprentice
sedunk
Posted

Greetings Rebecca,

My last message was sent before I finished. . You may also be allergic to your cosmetics. My lips and mouth area blew up when I recently used some este lauder lip gloss. The other thing I was told was if your partner eats gluten and then kisses you there is a chance you could react. Sounds crazy I know.

Good luck

  • 1 month later...
DgAvon Newbie
DgAvon
Posted

I have had DH for at least 40 years. Mine is not like yours! It's a water blister on my elbows, knees, waist, behind my arms and sometimes in the scalp. I take Dapsone and have for 30 years. I was just diagnoised with Celiac 4 months ago. I am on a gluten-free diet, it has not helped the DH though. I have read that it might not since the gluten has been in my system for so long. Before the skin breaks out, the itch is terrible, from the inside out! Good luck!

  • 2 weeks later...
katyo Newbie
katyo
Posted

aaaahhhhh!

I have never heard of this before, but maybe that could explain the hard bumps on the back of my neck and around my hairline. They are not zits, they don't overly itch. Kinda sore when I touch them. Could this be it, and WHAT IS IT?

megsbaby Newbie
megsbaby
Posted
It's a water blister on my elbows, knees, waist, behind my arms and sometimes in the scalp.
My husband has DH and that is exactly how I would describe what he gets. They are very watery like blisters that break and then scab over.

rebeccag - I got him to take a look at your pics and he thinks it only looks like the DH sores after the blisters break and scab over, but how you describe it starting out doesn't sound anything like DH, of course we aren't dermatologists. Do you get watery blisters like DgAvon mentioned?

Dapsone is probably one of my husbands life savers aside from a gluten-free diet. The itchiness gets so bad it frequently wakes him up during the nights if he doesn't take it. I'd recommend getting a dermatologist to take a look or do a biopsy.

katyo -

I have never heard of this before, but maybe that could explain the hard bumps on the back of my neck and around my hairline.
I would say that hard bumps are not characteristic of DH. These blisters will break very easily and are not hard at all. Sometimes all my husband does is move his hand across his arm and it will break the blisters.
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Tephie Apprentice
Tephie
Posted

Hi,

I was diagnosed with DH back in June of this year. My DH doesn't nessarily match the "textbook" descriptions in my opinion. I would get red bumps, that would BURN if I touched them on anything. Mine were never blisters, would never pop open or scab over. I would get them on my elbows, knees, the back of my calves, sometimes, rarely, I think I would get them on my butt. I would also get clear water blisters on different spots on my face. I would pop them, and they would just keep filling back up. They never itched either. I would also get stuff on my fingers. I thought they would look like a blood blister, and those were SORE. I usually couldn't touch that finger on anything for the first two days. Then the soreness would go away, but the brown under the skin would stay for several weeks until it worked it's way up and out.

Give you a little back ground on my story. It took me over three years to get a diagnosis. I started getting the rashes and I finally went to a dermatoligist. They took a biopsy and it came back as something, can't remember. They recommended that I go off all my pills to see if I could pinpoint what it was. I changed my calcium and I thought I figured it out. I didn't have rashes for quite awhile and then they started coming back again. I would schedule an appointment with my derm and by the time the appointment rolled around the rash was gone. I finally was able to get in and with a rash. I had one on my finger. They did a biopsy, and it came back fairly positive for DH. They sent me to the local University Dermatology department that has researched DH and Celiac for years. By now I had kind of figured out that beer was a very large trigger for me. So the days leading up to my appointment with the specialist I drank a beer each night. I went in saw them, they also took blood and another biopsy, this time from my elbow. They called a week later and based on both the blood and biopsy test result I was definately positive for DH. I have been gluten free since June and it's very rare, but I do get an occassional rash now, but it doesn't seem like they are as bad as before. I have read that the toxins can stay in your skin for a very long time.

So long story short, I just wanted to let you know that my DH did not look or act like "normal" dh. So I would definately find a good dermatolgist and speak with them about it.

Hope this helps.

Stephanie

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