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Eating Gluten But Not Reacting?!

bluewhitesky

By bluewhitesky
in Dermatitis Herpetiformis

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bluewhitesky Rookie
bluewhitesky
Posted

In a strange turn of events, my DS (age 6) has been eating gluten for a couple of weeks and in the last 5 days has had absolutely no flare up of his rash. I started him eating it again to get his rash to flare up so we can get a biopsy. We went on vacation to NYC for the long weekend and it was wonderful to let him eat what he wanted. I was expecting a flare up (as usual) but nothing...not an itch, not a blister. In facts his older open lesions are all almost completely dried and healing. His older closed lesions are now just smooth purple spots.

 

Of course I'm very happy for him to be comfortable (it's been over a year of this)....but just when I thought I'd figured it out, I'm thrown for a loop.

 

Does this sound like it's even possible that it's still DH? (derm said "mild case" not biopsied yet)

 

I have read that DH can come and go, but it hasn't been the case with my DS, until now. And really, he didn't eat just a bit of gluten. Over 4 days he had pizza, toast, a cookie, half a big pretzel, sandwiches! He was in heaven!

 

I'm thrilled if it isn't DH of course, but then there's the question of what the heck is it?

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squirmingitch Veteran
squirmingitch
Posted

It's really hard to say what it is. And there is still the possibility it's dh. DH can come & go even if one is eating gluten. If it is dh, then inevitably one day it will come with a vengeance but there is no telling when that day will come. It could be years or it could be weeks. Or maybe he doesn't have dh at all & isn't celiac. I know it's frustrating as heck for you. So at this point, I would say the only thing you can do is just let him eat gluten & enjoy life. If he flares again, you go get a dh biopsy.

bluewhitesky Rookie
bluewhitesky
Posted
  • Author

Thanks again squirmingitch for your response. You're right...it's nice to let DS enjoy eating what he wants without itching. I just need to relax about having all the answers for now. 

 

He did have a bit of a flare up last night about 2 hours after dinner. No gluten at dinner, so it doesn't totally make sense, but I'm just going to roll with it.

 

edited to add: Shrimp! That's what we had for dinner...the iodine could have done it I suppose.

kareng Grand Master
kareng
Posted

Thanks again squirmingitch for your response. You're right...it's nice to let DS enjoy eating what he wants without itching. I just need to relax about having all the answers for now. 

 

He did have a bit of a flare up last night about 2 hours after dinner. No gluten at dinner, so it doesn't totally make sense, but I'm just going to roll with it.

 

edited to add: Shrimp! That's what we had for dinner...the iodine could have done it I suppose.

 

 

Maybe its not gluten?  Maybe his rash is caused by something else?  

squirmingitch Veteran
squirmingitch
Posted

The iodine in the shrimp could have done it. Or, is it possible he has a shellfish allergy??????????

bluewhitesky Rookie
bluewhitesky
Posted
  • Author

Maybe its not gluten?  Maybe his rash is caused by something else?  

 

I'm hoping it's something else, I just don't know what. The doctors haven't agreed on anything. 

bluewhitesky Rookie
bluewhitesky
Posted
  • Author

The iodine in the shrimp could have done it. Or, is it possible he has a shellfish allergy??????????

 

Well, he hasn't reacted to shellfish before but I'm not ruling anything out. 

 

He just came home from school, scratching a bit. I asked to have a look at his rash. He's getting sick of me looking at his butt!! Poor kid. 

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squirmingitch Veteran
squirmingitch
Posted

((((HUGS))))

124chicksinger Apprentice
124chicksinger
Posted

I know I'm late to the game on this but don't want to go back re-reading to find out - but did the dr. do a blood test for celiac, and did you take him to an allergist for skin prick tests to rule stuff out?

bluewhitesky Rookie
bluewhitesky
Posted
  • Author

I know I'm late to the game on this but don't want to go back re-reading to find out - but did the dr. do a blood test for celiac, and did you take him to an allergist for skin prick tests to rule stuff out?

Thanks for your response!

 

Yes, we had a tTG and total serum IgA, both normal. GP did a tele-derm (email photo) with pediatric derm who said molluscum, which even the GP disagreed with. Real live dermatologist a few weeks ago who said it looks like DH and prescribed hydrocortisone and said to come back for a biopsy in 6 weeks (but I'm not doing the hydrocortisone as I know it will negate biopsy).

 

He had a skin prick test with an allergist four years ago, when he was 2, long before the rash (looking for asthma triggers). Only cats and dust mites came up. The doctors haven't suggested this again this time around, but I will definitely suggest it. I've been trying to keep a look out for other things that he could be reacting too.

 

Since I posted, the rash has definitely flared up again, not as badly as usual. 

MGR Apprentice
MGR
Posted

My daughter had molluscum a couple of years ago... An important difference with DH is that it is not itchy and once it appears it takes about a year to clear up by itself, it does not come and go and is highly infectious- the doctor might give you something for it but it is generally useless as it has to run its course. if you have other children you have to make sure they don't have baths together or share towels. DH is extremely itchy, non contagious ( obviously, because it is genetic) and can come and go. I think molluscs it is a fungal infection. Also they look completely different.

  • 3 weeks later...
bluewhitesky Rookie
bluewhitesky
Posted
  • Author

Thanks MGR, I missed your post somehow. Thanks for explaining the differences with molluscum. That helped. Yep, it definitely doesn't look like molluscum and it's definitely itchy unlike molluscum. Also my daughter, who baths with my son, shares everything, etc. hasn't caught it in all this time. So molluscum is definitley ruled out.

 

As for DH, I'm still thinking that that's what we're dealing with and it's just in a "going" stage. DS has a few spots here and there, nothing like before. The old ones are now mostly purple scars.  He's been getting emotional/moody/short tempered and I feel this could be gluten related because it is how I react. 

 

I feel guilty hoping that his rash flares up. My worry is that he seems better so I keep feeding him gluten when in fact I'm damaging him. So I really want the flare(small), a biopsy and the elusive diagnosis. And if that could happen for our appointment with the derm on May 28th that would be great...LOL.  Or if it was determined to 100% be something else, treatable, and easy to live and would take the celiac question out of play completely well, that would be best. 

 

I found a picture online that is exactly what my son's rash looked like. I'll find it and make a separate post.

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