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Is This Dh?

BeFree

By BeFree
in Dermatitis Herpetiformis

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BeFree Contributor
BeFree
Posted

For most of my life, I have had these strange little itchy bumps that pop up every once in a while. They are very tiny like little bug bites, and there are usually 5 or 6 of them in a line. They are there for a few days and then they go away. They seem to always come back in the same spots. If I get it in a new spot, then it will just keep coming back to that exact same place. When I first got them I was very worried that it was scabies, and I went to the doctor and the doctor said it was not scabies. I said, "Are you sure, are you sure?" several times, and the doctor said, "That is definitely NOT scabies. I am absolutely sure. I don't know what it is, but it's NOT scabies. It's probably just some sort of a reaction to stress." So whatever this is, I have had it from time to time for, at least twenty years or so. It doesn't seem to harm anything, just itches and goes away. Could this be DH?

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Di2011 Enthusiast
Di2011
Posted

Do you eat gluten lite? ie not so keen on breakfast (toast/cereal), avoid pizza/pasta and so on?

eatmeat4good Enthusiast
eatmeat4good
Posted

Yes, it could be. I used to get these pinpoint tiny bumps that itched like bug bites but were not red like the pictures of DH. They lasted a few days then healed, incidentally it was usually after I baked bread and had been kneading the dough. Little did I know that several years later it would re-appear in the angry red blistery condition of DH only this time on my face. Misdiagnosed for years as acne. Cleared up going gluten free. Go gluten free and see if it goes away and stays away. Mine did.

mushroom Proficient
mushroom
Posted

Your description of them lined up in a row is a hallmark of a certain variant of DH. That is exactly how my hubs' looked, marching downing his forehead in formation :D

BeFree Contributor
BeFree
Posted
  • Author

Thanks so much for all your responses:

In answer to your responses and also some more questions....

"Your description of them lined up in a row is a hallmark of a certain variant of DH. That is exactly how my hubs' looked, marching downing his forehead in formation"

Wow interesting--I guess that probably explains why the doctor didn't know what it was. It's probably more of a rare thing than a typical skin rash like scabies or ringworm. OK, so what is this variant your husband has, is there a special name for it, and is there any special way I should treat it to prevent it from getting worse, other than following the gluten-free diet?

"Do you eat gluten lite? ie not so keen on breakfast (toast/cereal), avoid pizza/pasta and so on?"

I have had the skin condition I'm describing for about twenty years or so, most of my life, I hadn't looked into it much b/c it had not been debilitating, just annoying. I have only been gluten-free, (100% gluten-free, not lite) for about 6 months, so it remains to be seen how the diet affects my skin. I currently have a flareup on my arm which is why I posted yesterday, it is the only one I have taken notice of in the past 6 months. What happened was, I burned my arm pretty badly while cooking, the burn has healed but now these tiny bumps have appeared on my arm next to the burn. Is it possible that gluten got into my skin while it was healing and the skin tissue was thin?

"I used to get these pinpoint tiny bumps that itched like bug bites but were not red like the pictures of DH."

Yep that's it, that's what I have, pinpoint tiny bumps!!!! OK it's very surprising after all this time to find out what this is.

And another question...since I do not have a Celiac diagnosis as of yet, is DH associated just with Celiac, or is it also related to gluten-intolerance without Celiac?

mushroom Proficient
mushroom
Posted

DH is celiac. A diagnosis of DH is a diagnosis of celiac. It is harder and easier to diagnose DH. Harder because it is difficult to find the antibodies in the normal testing, but easier because the antibodies can be found in the skin adjacent to a lesion, and if they take a punch biopsy of the skin adjacent to an active lesion and do special staining on it they can find the IgA antibodies. You need a dermatologist who knows what he's doing to do this so that it is done corrrectly.

No, when a I said a different variant I did not mean to imply it was someething different. Some rashes are diffuse and scattered all over, some seem to line up in a row for reasons known only to themselves :D Hubs never had it until after he went gluten "free" and then started cheating because he thought he could get away with it. Has never had it again.

weaselfish Rookie
weaselfish
Posted

Thanks so much for all your responses:

In answer to your responses and also some more questions....

"Your description of them lined up in a row is a hallmark of a certain variant of DH. That is exactly how my hubs' looked, marching downing his forehead in formation"

Wow interesting--I guess that probably explains why the doctor didn't know what it was. It's probably more of a rare thing than a typical skin rash like scabies or ringworm. OK, so what is this variant your husband has, is there a special name for it, and is there any special way I should treat it to prevent it from getting worse, other than following the gluten-free diet?

"Do you eat gluten lite? ie not so keen on breakfast (toast/cereal), avoid pizza/pasta and so on?"

I have had the skin condition I'm describing for about twenty years or so, most of my life, I hadn't looked into it much b/c it had not been debilitating, just annoying. I have only been gluten-free, (100% gluten-free, not lite) for about 6 months, so it remains to be seen how the diet affects my skin. I currently have a flareup on my arm which is why I posted yesterday, it is the only one I have taken notice of in the past 6 months. What happened was, I burned my arm pretty badly while cooking, the burn has healed but now these tiny bumps have appeared on my arm next to the burn. Is it possible that gluten got into my skin while it was healing and the skin tissue was thin?

"I used to get these pinpoint tiny bumps that itched like bug bites but were not red like the pictures of DH."

Yep that's it, that's what I have, pinpoint tiny bumps!!!! OK it's very surprising after all this time to find out what this is.

And another question...since I do not have a Celiac diagnosis as of yet, is DH associated just with Celiac, or is it also related to gluten-intolerance without Celiac?

Hello BeFree,

I'm a 54 year old male who's self-diagnosed DH in myself just over 3 months ago with the aid of my future wife. Yes, DH is Dermatitis Herpetiformis, and being that I have Herpes Simplex 1 ( lip area only ), those tiny blister like bumps are where the " Herpetiformis " comes from. One thing that has yet to be mentioned in your thread is that Iodine is a trigger. So, even though you've been gluten-free, you may need to examine your iodine intake, and that includes dairy as another member has mentioned that iodine is used in the milking / sterilization process.

I also got those little bumps on my forearms for almost 10 years before full-blown DH manifested in me.

I think your burn has created, just my conjecture, a " weak spot " in your skin for the DH to easily manifest.

Hope that helps, and only YOU can know YOU best. Be observant and attentive, and you'll figure out what you can and can't consume.

My best wishes for healing and peace,

WF

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BeFree Contributor
BeFree
Posted
  • Author

So, Mushroom, this could possibly be a way to get diagnosed with Celiac *without* having to go back to eating gluten for three months? If the doctor diagnoses DH they will also diagnose Celiac?

mushroom Proficient
mushroom
Posted

So, Mushroom, this could possibly be a way to get diagnosed with Celiac *without* having to go back to eating gluten for three months? If the doctor diagnoses DH they will also diagnose Celiac?

Yes. The diagnosis of dermatitis herpetiformis is a diagnosis of celiac by definition, the skin form rather than the gut form. This is why people who have only the skin manifestation often cannot get a diagnosis by biopsy. If you can get it from a knowledgeable doc it is an easier way to go. :)

BeFree Contributor
BeFree
Posted
  • Author

"Yes. The diagnosis of dermatitis herpetiformis is a diagnosis of celiac by definition, the skin form rather than the gut form. This is why people who have only the skin manifestation often cannot get a diagnosis by biopsy. If you can get it from a knowledgeable doc it is an easier way to go."

Nice! Now, what exactly is a "punch biopsy of the skin" though...does that hurt? :huh:

squirmingitch Veteran
squirmingitch
Posted

Here are some links. You would probably benefit from reading the entire thread on all of them. There is much info. contained as well as links in those threads. The individual threads are not that long so it won't take you forever.

https://www.celiac.com/forums/topic/5710-does-a-skin-biopsy-hurt/

https://www.celiac.com/forums/topic/67197-getting-a-biopsy-for-possible-dh-on-son/

https://www.celiac.com/forums/topic/67197-getting-a-biopsy-for-possible-dh-on-son/

https://www.celiac.com/forums/topic/88595-dh-biopsy/

BeFree Contributor
BeFree
Posted
  • Author

Thanks SI. :)

BeFree Contributor
BeFree
Posted
  • Author

Yikes it sounds painful...I started reading the thread but then got to the part about possibly needing stitches and started to cringe. I am NOT good with needles.

I am 39, but I think I would still need to have my mom come along and distract me during the process as is suggested for the small child. :lol:

I guess it's better than having to go back to gluten for 3 months though.

Anyone wanna post having a not so painful experience getting this biopsy, to make me feel better?

"Your description of them lined up in a row is a hallmark of a certain variant of DH. That is exactly how my hubs' looked, marching downing his forehead in formation"

I'm wondering...I just got through having "lines" on my arm, and a "patch" on my neck. Now the patch on my neck has cleared up a little, and the bumps that are left are now in lines. I venture a guess that it always forms in lines, but sometimes there's so many lines all together that it looks like a patch?

Avalon451 Apprentice
Avalon451
Posted

The biopsy isn't painful because they numb the area first. I mean, you get the needle pinch, of course, but the rest is painless. My 16 y.o. DD had two biopsies-- the first one, taken on an older lesion on her elbow, they thought it was psoriasis, and it came out weird, so then the dermatologist thought of DH, and did another biopsy on her back, next to a fresh lesion. My daughter did get one stitch on each punch biopsy. She was all numb and had no pain, and afterward it was fine once the numbness wore off, just a little mild discomfort. Don't stress over it, it's a much better option than 3 months' gluten trial and an endoscopy! :) Hope you figure it out soon. Do realize that it can take awhile after going gluten-free for things to clear up. It can be two years, when you've had it as long as you think you have.

Good luck!

eatmeat4good Enthusiast
eatmeat4good
Posted

Just wanted to mention it is common to have an outbreak after skin has been damaged like the burn you described on your arm. I read that in the DH archives here. Many times the trauma to the skin can cause DH to recur according to what others have experienced.

Also, sometimes my DH would form a line. I have linear excoriations on my forehead from the linear blisters and the itching. OMG! The good news is they are filling in and healing with gluten completely gone and with viatmin supplementation and good nutrition.

but yeah, it can take a linear form, a patchy form, blisters all over, or just one spot.

I've had them all. But never associated them with each other. Thought they were different things.

Let us know if you get a biopsy. good luck.

squirmingitch Veteran
squirmingitch
Posted

Some of mine have taken linear form also, even while other places on me were breaking out in patchy forms. And sometimes the linear would be the only form. DH seems to have a mind of it's own.

BeFree Contributor
BeFree
Posted
  • Author

"Just wanted to mention it is common to have an outbreak after skin has been damaged like the burn you described on your arm. I read that in the DH archives here. Many times the trauma to the skin can cause DH to recur according to what others have experienced."

I kind of thought this might be the case...I'm guessing that it's something to do with an overactive immune system response, since the burn would cause the immune system to activate?

Oh the interesting things we're all learning about our bodies!

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