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Could This Be Dh?

Sadmum

By Sadmum
in Dermatitis Herpetiformis

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Sadmum Newbie
Sadmum
Posted

Hi

I'm after some advice/experience with DH rash.

My son (almost 5) broke out in a very itchy,spotty rash with pastules about 6 months ago. He has always had a very mild ezcema, but this rash was very worrying to me. He wasn't sick, but he had a temp just from the heat of this rash! He couldn't sleep for a few nights. The GP did a celiac blood test and it was negative.

My SIL is diagnosed celiac, and my son had been having tummy issues (I thought from dairy at the time) so I googled celiac rash and that's when I discovered this DH. It was too similar, so I just took him off gluten and it cleared up.

4 months later he had his dermatology appt, (very long wait in public system where I live) and I put him back on gluten for 2 weeks before, and of course the rash was only just starting to appear.. She diagnosed ezcema and sent me off with some steroid ointment for him. I've kept him on gluten, and over the last 2 months the rash has been coming back, the ointment keeps it under control but it's always there in the form of purple type spots to show where it's been.

I took him back to GP when it started to spread to his thighs, and he got me another derm appt which was Wednesday. He had spots on right forearm, inside elbow, chest, back, thighs, shins.. He was covered! The derm said it's now 'papular ezcema' and gave me more ointment that's stronger and I have done wet dressings as well. I raised my DH suspicions but they said it "wouldn't respond to steroid, and it's not the correct distribution". (Not on both knees and elbows)

The steroid is keeping it under control, but there are still a few pastules appearing.

My questions are as follows:

Does DH respond to topical steroid? In my sons case the rash has responded, but still keeps coming back? To me that is not a full response.

Are larger blisters always present? He has had many fluid filled pastules, but the derm said it has to be blisters, which he has not had.

Any help would be appreciated =)

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Marilyn R Community Regular
Marilyn R
Posted

I would try to avoid the steroid cream.  It causes thinning of the skin. Try the diet again and see what happens.   Or get him to a good derm. or ped if you want a diagnosis before putting him on a gluten-free diet and be insistent that he be tested.  I feel for both of you!

 

.l

Sadmum Newbie
Sadmum
Posted
  • Author

I will try to link some pictures.

http://i105.photobucket.com/albums/m207/ness1421/05B4B75D-4442-4DF5-A8AE-4DEA0D0A779D_zpszvri2cdu.webp

http://i105.photobucket.com/albums/m207/ness1421/C3008BFC-618D-4D67-A070-B0C93DC72195_zpskhvg8atj.webp

http://i105.photobucket.com/albums/m207/ness1421/1F1DF962-CA42-49C2-A4E5-739FD6950809_zpsthj7vu4m.webp

The last one of his knee is the biggest lesion he ever had, but the only one to show up on his knee. Although it looks like he has 2 staring to appear there at the moment.

Thanks again =)

bluewhitesky Rookie
bluewhitesky
Posted

Poor little sweetheart. He must be so uncomfortable. 

 

We went through something similar with the dermatologist for my DS. He kept saying excema, prescribed steroids, said it wasn't in the right spot for DH, not symmetrical, etc. 

 

My first thought for you was to insist on another appointment with the Derm to take a biopsy. But, you're in a hard place right now because of another problem with the steroid cream. It can cause a false negative. We ended up using the steroid cream after the biopsy and it did seem to help clear up the sores and it did help with the itch. So the derm is wrong, it can have an effect on DH. Many people get a rebound rash after they go off it though, so it's usually not worth it.

 

This whole thing is so ridiculously frustrating. 

 

I think if I were you, I would just take him right off gluten, 100% to give him relief. Keeping him on it long enough to get the steroids out of his system and to try to get a biopsy would be so hard on him (and you). 

 

Judging by your long wait get the derm appt, I'm guessing you are Canadian? Any chance you are from Ottawa? 

 

I'm going to look up my old posts from a few months ago when I was going through the same thing. Though DS's rash wasn't as bad as your little guy's and although it was itchy he rarely complained and it didn't slow him down. We also have a family history of celiac. He gets frequent, mild tummy aches. 

 

We got the biopsy back a couple of weeks ago..it was mostly positive for DH (?) IgA present, but the size of the granules was "not entirely typical of DH". It was positive enough for the derm to call and say no gluten, come and see me in a year. We went back to our GP last week for a full celiac blood panel and vitamin testing. 

 

I don't know if you're read about the connection with iodine. Foods high in iodine can cause the rash to flare up. 

 

I feel like my post is all over the place. Please fire any questions my way if you want. I'm on the cusp of switching from being a mom asking for help to maybe being able to give some help now.

bluewhitesky Rookie
bluewhitesky
Posted

Here are my posts about going through this with my son. Pay particular attention to squirmingitch's responses. She knows what she's talking about.

 

https://www.celiac.com/forums/topic/106990-possible-dh-6-year-old/

 

https://www.celiac.com/forums/topic/107188-dermatologist-appointment-today/

 

https://www.celiac.com/forums/topic/107778-i-think-we-have-a-flare-up-pics/

  • 3 weeks later...
Sadmum Newbie
Sadmum
Posted
  • Author

Thanks for the repliesMarilyn and bluewhitesky!

I have read those threads bluewhitesky, very helpful thanks very much! Especially the pic of your sons forearm, my DS is covered on both forearms at the moment!

Your right it is incredibly frustrating! We have been back to the derm and he looked at his back and declared the spots as 'blocked pores'

Honestly I could not believe my ears! He prescribed more steroid (cream) as the ointment was causing the blocked pores. Well 2 weeks later and of course the 'blocked pores' are still there. What a surprise....

He has been referred to a gastroenterologist as he has some gastric symptoms as well, but that could take 10-12 months.... Although the fact that he is underweight might get him in sooner.

We are back at the derm in 2 weeks, they said if the rash was still occurring they might biopsy even though I have the impression they have no idea what they are looking for.

So a few questions..

I have used the steroid cream only on inner elbows and back of knees (the itchiest spots for him) for the last 2 weeks, so he will have areas that have had no steroid in 4 weeks at his next appointment, is there a chance of a diagnosis or not? I will not allow them to biopsy him if the results will not be accurate. I just won't put him through it.

Also if I do remove gluten again, how long before an endoscopy must he eat gluten again? Is 2-3 months long enough? He has been off gluten for 3 months earlier in the year, and the gastro symptoms returned in full after about 6 weeks.

I know this rash is rare in children, especially 5 year olds, but I really feel he has celiac and I should push for a diagnosis. My DH is getting annoyed at me for continuing to give him gluten even though it's becoming obvious even to us that he has issues with it. I feel like I'm doing the wrong thing by him but at the same time I worry his gluten free diet won't be respected without an official diagnosis.

  • 1 month later...
Sadmum Newbie
Sadmum
Posted
  • Author

Hi.

Just bumping this thread hoping for a little advice.

My son has another derm appointment next week, it will be his last one as I am having another baby very soon and I can't let this go on any longer.

He has been gluten free for a few weeks, after 4 months back on gluten. He is improving already in so many ways but the rash is still persistent. I stopped using the steriod a while ago as I realised they weren't really helping. His skin was peeling and the rash was actually worse.

If I take him to the appointment the derm will want to biopsy (finally)

if he has an active lesion is there a chance of a positive biopsy? Has anyone with a diagnosis been gluten free for a little while before being diagnosed?

Also any comment on the photos above would be welcome.

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squirmingitch Veteran
squirmingitch
Posted

I'm sorry but for an accurate biopsy result, you have to be actively eating gluten right up until the biopsy. 

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