Dermititis Herpetiformis (Celiac Rash)??? Help!

[MandyB]

I am feeling at such a loss for where to turn to next with my son's symptoms!  Here is a little timeline of everything he has gone through in the last couple of years, and I'm hoping someone here can offer some advice as to what is going on with my poor guy!  He has been through so much since he was born, and I'm just feeling so frustrated with his Allergist and Pediatrician right now.

Evan at 4 weeks old - Developed SEVERE eczema  throughout his body, and mild swelling and redness around his eyes

6 months old - Pediatrician finally ordered blood test which showed he was allergic to egg and peanut  (He was still exclusivelly breastfeeding at this time).  I cut all egg and peanut out of my diet and the eczema was completely gone within two weeks.

11 months old - Came down with whooping cough.  Chest Xray revealed congenital heart defects.  :(

1st Birthday - Open heart surgery to repair his heart defects - surgery a success!

still breastfeeding, but also eating solids on his own

12 1/2 months - Develops rash that looks exactly like chicken pox, except that the itchy, liquid blister/bumps pop and then scab within 1-3 days of appearing.  Pediatrician argues they are bug bites, which I am positive they are not because more seem to appear after mealtimes.

13 months - Allergist does skin test and it shoes a positive allergy to Garlic, egg, peanut and cats.  We eliminate Garlic from the house now too.

14 months - Rash appears again

15 months - Rash appears again.  Pediatrician still says they are bug bites (our house is clean and free of bugs!).  Allergist says they're an allergic reaction and  orders a blood test for gluten sensitivity.  We also test to see if he has ever had chicken pox.  Both results are negative, and the Pediatirican and Allergist say there is nothing more they can do.

15-24 months -  2-6 bumps appear occasionally, but not too badly

25 months (today) - The "chicken Pox" type rash is back full force.  I am in the process of weaning him and have cut back to one feeding a day.  At first I thought he must have come into contact with garlic or egg, but my husband swears he only ate Soybutter and Jelly Sandwich, fruits and veggies the day it appeared.

 They always appear around the same spots (neck, hands arms, legs and feet).  This weekend he developed the rash again!  He has about 15 of the bumps from head to toe and is complaining that some of them hurt, and scratching others that haven't popped and scabbed yet.  I feel like there is something bigger going on and his doctors are not putting it all together.  Do you think he could have Celiac?  I did a search online to figure out what this rash could be and everything online leads to celiac rash, or DH.  His do not appear in huge clusters though, like some photos I saw.  Anyone else have experience with the rash being singled blisters throughout the body?  What else could this be?  I feel so bad for him and hate that I can't seem to fix this for him!

What type of doctor SHOULD he see?  The pediatrician?  The allergist? A Dermatologist?  Or a GI?

[mamandedeux]

Wow! I'm soooo happy I just found this thread... totally randomly too. I'm going through the same thing with DS2. Like your DS, my DS2 had/has eczema (no surprise, both my kids have it, and I have it too, so do my parents and siblings). But then last summer, he got 2-3 of those blisters you described, then they went away after a few weeks (same pattern as you). About 2 months ago, they just started cropping up everywhere. He literally had hundreds, mostly on his feet, hands and legs. Ped originally suspected chickenpox, but we got a second opinion when the scabs fell off and new blisters kept forming. Second diagnosis was papular urticaria, likely in reaction to a bug bite. This made total sense, seeing as he was bitten by sand fleas right before the rash appeared. But the rash just isn't clearing up. We've resorted to cortisone to control the itchiness. I'm now thinking he may have dyshidrotic eczema, which I have. The drs. don't think that's likely because of the leg involvement, but I get it on my face, so I think it could be a possibility.

We haven't looked at allergies yet because his rash doesn't seem to have anything to do with his diet. I know from years of elimination diet that my ezcema is not triggered by what I eat. I've never heard of celiac rash though. I'm off to google it!

Good luck, it is incredibly frustrating!

[scsigrl]

I didn't this DH looked like that but if that's what you suspect you would want to have a biopsy by a dermatologist when there is an active rash.

Good luck.

[mytwomonkies]

We suspect our 2 year old has DH as well though it seems a little different than what you describe. I asked our GI about it, he is a really good GI and is a celiac specialist. He said it's not typically diagnosed in young children (that's not to say they can't have it young) and the youngest he has seen it diagnosed was around 8 years old. I think it's just another one of those tests that's not quite accurate in young children. Unfortunately the celiac blood test is not super accurate in young children either but if you suspect celiac and he's still eating a normal gluten filled diet than I would have him tested for celiac. Your pediatrician may run the blood test before referring you to a GI or they may just refer you for all the testing. Hope this helps!

[mamandedeux]

Just to update - OP, I hope this can help you as well. We saw a dermatologist who diagnosed DS with Gianotti-Crosti syndrome. He also suspects dishydrotic eczema (which I have).

[heatherdeg]

Originally Posted by mytwomonkies 

We suspect our 2 year old has DH as well though it seems a little different than what you describe. I asked our GI about it, he is a really good GI and is a celiac specialist. He said it's not typically diagnosed in young children (that's not to say they can't have it young) and the youngest he has seen it diagnosed was around 8 years old. I think it's just another one of those tests that's not quite accurate in young children. Unfortunately the celiac blood test is not super accurate in young children either but if you suspect celiac and he's still eating a normal gluten filled diet than I would have him tested for celiac. Your pediatrician may run the blood test before referring you to a GI or they may just refer you for all the testing. Hope this helps!

This is not only true of celiac tests, but in all allergy testing in a child under 2yo.  Their immune systems are still on a roller coaster with a TON of maternal antibodies still flushing out of their systems (even formula-fed babies) and therefore not only screwing up the accuracy of blood tests on the immune system, but also a major reason why infants get vaxes in multiple doses (maternal antibodies are often fighting off the vax instead of the child's system fighting it off to build immunity).

Oddly, allergists will run tests anyway and then proceed to act on them like they're accurate.  They MIGHT be, but they can't be banked on.  It can make a family's life a living hell.  

Our immune systems hit another milestone around age 7.  Many tests (Celiac--even Asperger's) are held off until 8yo because 7 is such a huge year for the body and they like to ensure that all those changes are done.
 

Biopsy for celiac is also unreliable.  Getting a clear biopsy may just mean that they didn't grab damaged parts of the intestine.  A damaged one may lead them to feel the problem is more severe than it is.

We had a great immunologist who said that the best test, hands down, is to remove the suspect and look for a change.  It's not convenient or easy, though.  :(

As for Giannotti-Crosti, I don't THINK those rashes are painful like the OPs, but I could be wrong about that.  The kind of doctor I would see, though, is an allergist.  One that understands that the prior (under 2yo) bloodwork may not have been the most reliable.  The ones that "get" that, I think you have a better chance of getting real answers/progress from.