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A 4 Year Old With Dh?

hmitchell

By hmitchell
in Dermatitis Herpetiformis

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hmitchell Newbie
hmitchell
Posted

My 4 Year old has had these spot for 2 years 

 

We have been to see several Dermatologist and all said they don't know whats wrong with her skin , we did a biopsy and it came back inconclusive. The allergists we have seen did not know either as the blood tests were negative for allergies too.

She scratches so much at night, (even with antihistamine) if she had dairy during the day.

We have been Gluten free for 18 months  but the spots keep coming especially a day or two after she eats dairy or Soy.

 

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

is this DH ?

can someone recognize these spots, they start off as tiny red circles and then expand and grow wider and wider and sometimes get infected.

 

 

worried mom 

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squirmingitch Veteran
squirmingitch
Posted

I answered you on the photo bank thread you posted on. Here is some additional info.

Interesting Reading on DH:
 
 
 
Descriptions of DH Types:
 
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
 
DH Photobank:
 
 
 
 
Newbie 101 for celiacs
 
mendylou Rookie
mendylou
Posted

My 4 Year old has had these spot for 2 years 

 

We have been to see several Dermatologist and all said they don't know whats wrong with her skin , we did a biopsy and it came back inconclusive. The allergists we have seen did not know either as the blood tests were negative for allergies too.

She scratches so much at night, (even with antihistamine) if she had dairy during the day.

We have been Gluten free for 18 months  but the spots keep coming especially a day or two after she eats dairy or Soy.

 

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

is this DH ?

can someone recognize these spots, they start off as tiny red circles and then expand and grow wider and wider and sometimes get infected.

 

 

worried mom 

Oh, this looks so familiar to mine.  Would you describe the breakouts as divets or craters? Mine eat away at the surface skin which causes craters in the skin.  There is usually a fluid or deposit which can be scratched away.  After that it takes quite a while for the skin to heal from the inside out. 

hmitchell Newbie
hmitchell
Posted
  • Author

Oh, this looks so familiar to mine.  Would you describe the breakouts as divets or craters? Mine eat away at the surface skin which causes craters in the skin.  There is usually a fluid or deposit which can be scratched away.  After that it takes quite a while for the skin to heal from the inside out. 

Thank you again Squirmingitch, your info is very helpful.

 

Mendylou, the spots are definatly craters, like the skin is eating itself and making a deep hole, and instead of healing its working in reverse getting wider and wider punched out hole (they start off tiny holes and get huge)  when I put cream on her I "fill in" the holes, its painful to see.

This is what lead me to research autoimmune diseases  as it looked to me as the skin was eating itself, her body was attacking herself...

They do take a very long time to heal, and there is always a scar left behind but its not purple like other people have mentioned, and there is always a rim to the spot too like its been outlined in white. 

 

have you beed diagnosed ? I'm asking as want to spare her from seeing even more Drs... and if you know for sure that would help me a lot 

 

many thanks 

 

worried mum 

squirmingitch Veteran
squirmingitch
Posted

What happens is that it separates the layers of the skin. Typical for the dh rash.

hmitchell, it's going to be impossible to get an official dx unless you're willing ot put her back on gluten. you have to be eating a gluten diet for a dh biopsy or a endoscopic biopsy or the celiac blood panel. And 60% of us with dh test neg. on the celiac blood panel even when we've been eating gluten b/c the antibodies are concentrated in our skin. Sucks but that's what it is.

hmitchell Newbie
hmitchell
Posted
  • Author

That does suck!  I am consedering a celiac blood test just so i know for sure, the not knowing is too hard with little ones who can't tell you how they feel once you have fed them so you don't know if you are making it worse of not.

i wonder how long i have to give her gluten for before the testing?

Thanks again for all the info.

squirmingitch Veteran
squirmingitch
Posted

The problem is that when she goes back on gluten then it will be depositing more antibodies under her skin & that means the rash (which has already hung on for 18 months) will go on & on & on. If she gets the blood panel there's a very good chance she will come up false negative & then you play hell getting the doc to believe she has celiac b/c the test said negative. If there's damage in the intestine that he can SEE (& there's a LOT of territory in there!) he might dx celiac but then again he might not UNLESS he takes enough biopsies ( 6-8) & they come up positive. The problem with dh is that old bear that it's under our skin. Now, you could put her on gluten & get a derm who truly knows what they're doing to biopsy for dh but they better KNOW their stuff and the lab he sends it to better know their stuff!

If you don't get an official dx then there's the problem of school meals & exposure & them not taking you seriously. You're caught between a rock & a hard spot & there's no easy way out.

 

And YVW for the info. Anytime you have questions just post them. We'll also cry, scream, rant, rave & pitch fits with you if you've a need for that.

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

I just wanted to give a quick update 

So we went ahead and did a celiac panel blood test which of course came back negative even though I started giving her gluten for 10 days prior, our Dr seemed to think that was sufficient time....

5 Days on Gluten and there was no change in the 'spots' but on day 6 they flared up and new patches appeared all down the back of her legs ....

is that the usual time span so being Glutened ?

 

the dermo wants to do another biopsy, a DIF and  EBA which I refused as they messed up the first biopsy so badly.

 

and we are now on topical Dapsone which is not working the miracles i was hoping for (the rash keeps coming and the spots are getting deeper )

 

so our next test is a genetic one to see if we have celiac gene ..... its a cheek swap 

i just don't understand why no dr in this area (kansas city) can tell me what the hell this is and if it is DH how can i help my little girl 

This disease is so hard to cope with 

 

thanks in advance for any advice 

 

super worried  mom

pricklypear1971 Community Regular
pricklypear1971
Posted

The biopsy for dh is a punch biopsy taken next to the lesion on clear skin. It can not be accurately read any other way.

If she's been on steroids at all in the last three or so months, it could make the tests (blood and biopsy) falsely negative. Steroids are used to treat autoimmune diseases so it could be troublesome for several tests.

I'm sorry she's going through this. I know, as a mom, it's incredibly difficult to watch your child in pain. I suggest asking a local celiac support group for a name of a celiac savvy doc in your area. Get a celiac savvy opinion on what's going on.

And ten days was not enough for antibodies to build - most advise 2-3 months. Kids are alsoore difficult to get a + on. Something about not having enough time to build enough antibodies to show up on tests.

squirmingitch Veteran
squirmingitch
Posted

What Prickly said. Add to that, the fact that those of us with dh test false neg. on the celiac blood panel 60% of the time.......

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

Can someone please point me in the direction of the full Celiac blood panel info, I know I have seen it here but I can't find it 

 

thanks 

 

hmitchell

squirmingitch Veteran
squirmingitch
Posted

Here you go:

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 
 
The DGP test was added recently to the full panel.
 
 
Also can be termed this way:
 
Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG
  • 1 month later...
hmitchell Newbie
hmitchell
Posted
  • Author

 

Here you go:

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 
 
The DGP test was added recently to the full panel.
 
 
Also can be termed this way:
 
Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

Thank you  for that !! 

 

 

Can you have DH but test negative for the celiac genetic test ? 

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