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Si & Ash's Mom

Could This Be Dh In Child? Not Really Itchy...

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Hi all. My 8 year old son has had this rash on his elbows for well over a year now. He says it doesn't really itch though I see him scratching/picking at it a lot. He has some digestive/immune/mood issues we're trying to figure out and I'm wondering if I'm totally barking up the wrong tree thinking it's gluten. He had attg iga test and it was negative. His allergist/immunologist said the rash is probably psoriasis but it doesn't look like it to me... thanks for your thoughts :)

 

image_zpsrqfejaod.jpg

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It is presenting bilaterally but dh itches like mad!!!! If it's been there for over a year now & it doesn't itch enough to drive him insane then I'd say it's something else. There are other skin rashes associated with celiac disease but as far as itching goes dh makes poison ivy feel like a walk in the park.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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It is presenting bilaterally but dh itches like mad!!!! If it's been there for over a year now & it doesn't itch enough to drive him insane then I'd say it's something else. There are other skin rashes associated with celiac disease but as far as itching goes dh makes poison ivy feel like a walk in the park.

Thanks so much for responding squirmingitch. That's what I was thinking. If DH does progress and itch more over time, he's had it long enough that it would probably be bothering him more by now. It just looks so much like DH (and he's had it so long) that I thought I'd ask. 

 

One more question - he was on prednisone a while back due to asthma and the rash almost completely cleared. It then came back worse when he was done with the prednisone. Would most skin rashes/conditions react this way to steroids? Just trying to narrow it down if I can and there's so much knowledge here on this forum :) 

Thanks :)

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I don't know about most skin rashes --- don't know if they would react that way or not. I've never heard of things like psoriasis or eczema reacting like that to withdrawal of steroids but I KNOW dh does that. This is odd. Is he super stoic??? 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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I don't know about most skin rashes --- don't know if they would react that way or not. I've never heard of things like psoriasis or eczema reacting like that to withdrawal of steroids but I KNOW dh does that. This is odd. Is he super stoic??? 

Well, he kind of is in a way - he has an allergic condition called cold urticaria (basically he's allergic to the cold). If he gets cold/wet he gets hives and itches. He doesn't really complain about being itchy even though he gets hives a lot... From what I have learned here though DH is so unbearably itchy. I can't imagine that he wouldn't complain if he was experiencing what I know a lot of you experience... Very confusing! I'll maybe just keep an eye on him and push for testing if it starts to noticeably bother him. Thanks so much for your help squirmingitch. I really appreciate it. 

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Oh you are most welcome!!! 

I've heard of/read about cold urticaria & from what I've read or been told it is a pretty darned painful thing so maybe he is a total trooper & has an amazing threshold for pain.

Just some food for thought & I'm not even sure what to make of what's going on with him.....

When I began getting blisters (which is how my dh started out presenting) the places would itch a good bit for 12 to 24 hours before a blister ever appeared (this is typical of dh) but when the blisters did appear they itched surely but the moment I scratched to open skin then the itching went WAY down -- it would only itch off & on & the itch was more along the lines of what you experience with a mosquito bite. That went on for probably (I'm guessing at time frame) a year or more before things escalated. What I'm saying is that early on dh can be "not so insanely" itchy.

The other thing is how about getting him a dh biopsy? You know 60% of us with dh test negative on the celiac blood panel so the best way to get a dx of dh is through a dh biopsy. If he's eating a gluten diet & hasn't been on oral steroids for 2 months then you could take him for a biopsy. Frankly I wouldn't bother with a ped derm -- can't regular derms treat kids? At any rate tell the derm you want a biopsy to RULE OUT celiac. Make sure its done on clear skin adjacent to an active fresh lesion.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Oh you are most welcome!!! 

I've heard of/read about cold urticaria & from what I've read or been told it is a pretty darned painful thing so maybe he is a total trooper & has an amazing threshold for pain.

Just some food for thought & I'm not even sure what to make of what's going on with him.....

When I began getting blisters (which is how my dh started out presenting) the places would itch a good bit for 12 to 24 hours before a blister ever appeared (this is typical of dh) but when the blisters did appear they itched surely but the moment I scratched to open skin then the itching went WAY down -- it would only itch off & on & the itch was more along the lines of what you experience with a mosquito bite. That went on for probably (I'm guessing at time frame) a year or more before things escalated. What I'm saying is that early on dh can be "not so insanely" itchy.

The other thing is how about getting him a dh biopsy? You know 60% of us with dh test negative on the celiac blood panel so the best way to get a dx of dh is through a dh biopsy. If he's eating a gluten diet & hasn't been on oral steroids for 2 months then you could take him for a biopsy. Frankly I wouldn't bother with a ped derm -- can't regular derms treat kids? At any rate tell the derm you want a biopsy to RULE OUT celiac. Make sure its done on clear skin adjacent to an active fresh lesion.

That's great advice - I have found that the docs we've seen so far have been pretty dismissive but I'll try to get a referral to a derm. Our allergist has been the most willing to work with us so I'll see if she'll refer us. Wish us luck! And all the best with your DH - I can't imagine how difficult it would be to live with.

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No, not really painful or invasive. Here is a link & they show you a picture of how it's done. Scroll down to the drawings:

http://celiac.org/celiac-disease/dermatitis-herpetiformis/

 

And print this out & take it with you to the derm & MAKE them read it. If they do the biopsy wrong & most do then we have zilch. So many want to take it directly ON the lesion so be a helicopter mom & make sure things are done correctly.

https://www.pathology.med.umich.edu/handbook/details.php?testID=849

 

Also a note..... The pattern the pathologist is looking for is easily destroyed (that's why they have to take it ADJACENT to a fresh lesion) by scratching so it might be a good idea to put several layers thick of gauze bandage or some really big band aids over the area so your son doesn't scratch it & destroy the patterning. Maybe sleep with socks on his hands for a couple nights before the appt.

 

 

OH! And a dx of dh IS a dx of celiac -- no more test needed.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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No, not really painful or invasive. Here is a link & they show you a picture of how it's done. Scroll down to the drawings:

http://celiac.org/celiac-disease/dermatitis-herpetiformis/

 

And print this out & take it with you to the derm & MAKE them read it. If they do the biopsy wrong & most do then we have zilch. So many want to take it directly ON the lesion so be a helicopter mom & make sure things are done correctly.

https://www.pathology.med.umich.edu/handbook/details.php?testID=849

 

Also a note..... The pattern the pathologist is looking for is easily destroyed (that's why they have to take it ADJACENT to a fresh lesion) by scratching so it might be a good idea to put several layers thick of gauze bandage or some really big band aids over the area so your son doesn't scratch it & destroy the patterning. Maybe sleep with socks on his hands for a couple nights before the appt.

 

 

OH! And a dx of dh IS a dx of celiac -- no more test needed.

That is super helpful - thanks so much! :)

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You are so welcome! Let us know what happens please.

Maybe the allergist can make a few calls around & see which derms have experience with doing biopsies of dh. That would be a great help right off the bat.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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re: prednisone, I have DH and psoriasis - after coming off prednisone, everything came back so much stronger...and this got worse every time (took prednisone 4 times - will never take it again!).  The reound effect was awful. 

Re: this picture: I agree DH is BRUTALLY itchy.  Psoriasis and eczema are both itchy but more of a bothersome itch, rather than a want to scrathc your skin off, can't do anything else itch.  So I think it is more likely eczema/psoriasis or something like that... good luck


Celiac and DH

Diagnosed January 2015

gluten-free since January 1, 2015

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re: prednisone, I have DH and psoriasis - after coming off prednisone, everything came back so much stronger...and this got worse every time (took prednisone 4 times - will never take it again!).  The reound effect was awful. 

Re: this picture: I agree DH is BRUTALLY itchy.  Psoriasis and eczema are both itchy but more of a bothersome itch, rather than a want to scrathc your skin off, can't do anything else itch.  So I think it is more likely eczema/psoriasis or something like that... good luck

Very interesting - thanks so much Nolev. Yeah, prednisone is terrible - I really hope he never has to be on it again :( Good to know that psoriasis reacts the same... food for thought. 

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Hi Si and Ash's Mom, I am a mom to a 7-year old boy with DH (not formally diagnosed yet). You can look up my past topics and you'll see some pictures of his rash. It does look a lot like your son's rash. I don't think you're barking up the wrong tree, esp with the other digestive/mood stuff.

 

I wanted to comment on the itchiness question. For much of the time, my DS would be constantly itching his rash, but never complaining. If I asked him if he was itchy he would answer, "A bit," or "I guess." I don't even know if he realized how much he was scratching.

 

There were times when it flared up and he complained, especially at night.  He even missed a day of school once because of it, but when it was at the level of your son's elbows he wouldn't complain. He would scratch and I would find blood on his clothes and sheets, but he wouldn't complain.  He also never cries when getting a needle, rarely cries when he hurts himself, etc. so maybe it's his nature. Or perhaps it is less itchy in kids. It would be interesting to find out more about other kids with DH.

 

As for the biopsy, my DS had one last June on his elbow. It was a piece of cake for him (see above LOL) but the whole thing took longer and was a little more involved than I expected. First was the local freezing (needle...a couple of jabs I believe). Then he had to wait for it to take effect. Then the Dr. did the punch in a couple of different places. I had to hold my DS still in case he flinched. Then he had a stitch in each site. 

 

My best advice is to listen to squirmingitch :wub: (I owe you an update and a biopsy report, squirming!). She knows what she's talking about and was the best coach before our doctor appointments last year at this time.

 

 

I am getting ready for a one year follow up with our derm, so I'm back on the forum gearing up, I'd be happy to answer any questions for you.

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Hi Si and Ash's Mom, I am a mom to a 7-year old boy with DH (not formally diagnosed yet). You can look up my past topics and you'll see some pictures of his rash. It does look a lot like your son's rash. I don't think you're barking up the wrong tree, esp with the other digestive/mood stuff.

 

I wanted to comment on the itchiness question. For much of the time, my DS would be constantly itching his rash, but never complaining. If I asked him if he was itchy he would answer, "A bit," or "I guess." I don't even know if he realized how much he was scratching.

 

There were times when it flared up and he complained, especially at night.  He even missed a day of school once because of it, but when it was at the level of your son's elbows he wouldn't complain. He would scratch and I would find blood on his clothes and sheets, but he wouldn't complain.  He also never cries when getting a needle, rarely cries when he hurts himself, etc. so maybe it's his nature. Or perhaps it is less itchy in kids. It would be interesting to find out more about other kids with DH.

 

As for the biopsy, my DS had one last June on his elbow. It was a piece of cake for him (see above LOL) but the whole thing took longer and was a little more involved than I expected. First was the local freezing (needle...a couple of jabs I believe). Then he had to wait for it to take effect. Then the Dr. did the punch in a couple of different places. I had to hold my DS still in case he flinched. Then he had a stitch in each site. 

 

My best advice is to listen to squirmingitch :wub: (I owe you an update and a biopsy report, squirming!). She knows what she's talking about and was the best coach before our doctor appointments last year at this time.

 

 

I am getting ready for a one year follow up with our derm, so I'm back on the forum gearing up, I'd be happy to answer any questions for you.

Thanks so much dear. Yes, I would love an update on what's going on. 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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IMG_1066_zpscf4c30c0.jpg

 

Here's another pic - would this be considered a flare-up? He really doesn't seem to find it that itchy... I don't think it has ever kept him up at night or anything... Thank you all for your replies and input :)

 

And sorry for the giant pictures! I don't know how to make them smaller...

 

And bluewhitesky - I hope you are figuring things out with your son. I'd love to hear more about the results and what happens at your follow-up appointment. Thanks for your help :)

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That looks like a lot of new blisters compared to the last picture you posted. 

 

Have you noticed any worsening of the rash after your son eats foods containing a lot of iodine? Iodine is connected to DH. For my son, it is a huge trigger. 

Hmm... I haven't really noticed that it gets worse with iodine but I'm not really familiar with high-iodine foods. Would that be foods with lots of iodized salt? He does crave salty foods...

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So iodized salt for sure, plus pretty much any seafood, fish, seaweed, are the biggest. Also dairy products, egg yolk, turkey, some random veggies in lesser amounts. My son reacts to carrageenan which is an additive/thickener made from seaweed in lots of processed foods, esp. dairy products. We figured this particular one out after some experimentation and investigation after being gluten free for a number of months.

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Potatoes are full of iodine too.


gluten-free since June, 2011

It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

Life is good!

 

 

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Not the whole potato but the skin. I deeply peeled all our potatoes for a year when we were limiting our iodine intake. And watch out for that carageenan! READ LABELS! you wouldn't believe the products that have it in it. Last year I began having a bad flare & my hubs too. I knew we weren't getting any gluten & was going crazy trying to figure out what was going on. After about 6 weeks I noticed the Lactaid with added calcium milk we were drinking also contained carageenan. My store had stopped carrying the Lactaid 2% that did not have added calcium. Stupid mistake on my part not to read the label carefully. I had only done a cursory reading looking for gluten which is really not found in cow's milk. Carageenan is a fancy word for seaweed or sea algae - it is used a lot as a binder or thickener in products & is very high in iodine. I suppose it has a good amount of calcium in it & that's how they were adding the calcium to the milk. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!

 

Here is a link for a low iodine diet. For kids though I certainly wouldn't put them on low iodine for more than a 2 week period as they need their iodine even more than we adults do. So i would only do it as a trial & see if the rash gets noticeably better eating low iodine. If so, then it's a real indication of dh since iodine makes the dh rash flare & this is a medically known effect.

http://www.thyca.org/pap-fol/lowiodinediet/

Egg yolks is where the iodine is in eggs -- egg whites are fine. Peanut skins are higher in iodine but the skinless nut is okay. Although not listed any longer on the thyca.org site; it used to list grapes & raisins as high iodine, spinach, turnip greens, lima beans.

 

He certainly has a lot more rash than the last time you posted photos. Yes, i would call that a flare or a progression. 

 

Something to look for ~~~ observe closely & see if those places get red or bright pink (inflamed) off & on through the course of a day & night. Also see if when that happens, if it does happen, the skin surrounding each lesion gets sort of swollen much like mosquito bites do.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Thanks everyone. We will try to lower his iodine intake to see if it helps. So yesterday evening his elbows started looking inflamed/infected (I didn't get a picture as he's already really self-conscious about it). They are now like this...

 

image_zpsbid63lim.jpg

 

He still claims it's not that itchy... I just don't know what to think. I'm afraid any derm will brush us off (though there's no harm in trying) and I'm scared that, if we do go through with a biopsy, he'll be super upset about it (particularly if it comes back negative). My husband thinks I'm way over-reacting and putting him through unnecessary stress but I would hate to leave him undiagnosed if gluten is a problem... What to do... 

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So it got all red & raised around the lesions right? I can see marks where he scratched it. DH gets really itchy when it gets that raised red puffy look. He's scratched those tops off so now you see it's open in those places. This is what my dh does now that I'm no longer getting the blisters. 

 

Try the low iodine & if it responds then you can further test by loading him up with iodine rich foods & see if it flares again. Now you have to realize that each person is different & reacts differently. For example, I reacted to iodine intake very quickly -- like a day at the most 2. When I went low iodine things would calm down very quickly also --- like 3 days. My husband however, took around 3 days to begin reacting but it would take him 10 days for it to calm upon removal of high iodine. AND I think it depends on what stage or severity the dh is in. 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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So it got all red & raised around the lesions right? I can see marks where he scratched it. DH gets really itchy when it gets that raised red puffy look. He's scratched those tops off so now you see it's open in those places. This is what my dh does now that I'm no longer getting the blisters. 

 

Try the low iodine & if it responds then you can further test by loading him up with iodine rich foods & see if it flares again. Now you have to realize that each person is different & reacts differently. For example, I reacted to iodine intake very quickly -- like a day at the most 2. When I went low iodine things would calm down very quickly also --- like 3 days. My husband however, took around 3 days to begin reacting but it would take him 10 days for it to calm upon removal of high iodine. AND I think it depends on what stage or severity the dh is in. 

That's good to know - we will give it some time when we lower his iodine intake. Thanks so much for all your help :)

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That looks exactly like my son's DH, especially those little craters where he has scratched off the tops. 

 

I know exactly the frustation of trying to figure out what's going on. What we did, was take our son off gluten to see if the tummy aches would get better. Tummy aches stopped immediately and the rash started healing. That was great information and it gave me something to go with when I went to the doctor. The trouble with that was we had to get him back on gluten for a full 12 weeks before we could do any testing. So most people would tell you for that reason, to not go off gluten at all until you a diagnosis. 

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