Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

A 4 Year Old With Dh?

hmitchell

By hmitchell
in Dermatitis Herpetiformis

Recommended Posts

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 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 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 ? 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      2

      Celiac support is hard to find

      Hi @tiffanygosci Well done for reaching out, fantastic you have found this forum. It sounds like you are managing the diet well, it can be overwhelming at first, but it will get easier. I wonder if you have seen the short film 'Glutened'? - someone shared it on this forum a few months ago and it reminded me of how isolating it can be,...
    2. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Newly diagnosed mam to coeliac 11 year old

      You are very welcome @Dizzyma. Gastroenterologists are now following this rule in the UK more and more with children, so I am not surprised your daughter is not having an endoscopy. Switching to a gluten free diet should begin to help, but also, even if you have to have testing done privately, it would be very helpful for you to find out if your daughter...
    3. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      2

      Celiac support is hard to find

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    4. trents
      - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient. The one test that was ordered...
    5. mamaof7
      - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,958
    • Most Online (within 30 mins)
      7,748
    DLA
    Newest Member
    DLA
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Celiac support is hard to find

      By cristiana · Posted

      Hi @tiffanygosci Well done for reaching out,  fantastic you have found this forum. It sounds like you are managing the diet well, it can be overwhelming at first, but it will get easier.     I wonder if you have seen the short film 'Glutened'? - someone shared it on this forum a few months ago and it reminded me of how isolating it can be, particularly at first, when you don't know anyone with celiac disease.  *see link for film below. I realise now how blessed I was that when I was diagnosed two friends were also diagnosed around the same time, as we shared a lot of tips and recipes at the start.   Since then the number of people I know diagnosed with coeliac disease has grown and grown, there seems to be a much greater awareness of it among healthcare professionals and the public, at least this side of the Atlantic (I'm British).  I think in time you may find this, too. That said, those two coeliac buddies were 'straightforward' cases who seemed to recover very quickly when on a gluten-free diet - I struggled for some time.  So I found that I spent much more time discussing things with this online coeliac family. If you have any more questions, we're here for you.  I hope your event on 15th goes well.  Sounds like a good start!  I like you am not keen on Facebook, but perhaps setting up an account short-term might help? * https://vimeo.com/486284734 Cristiana     
    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      You are very welcome @Dizzyma. Gastroenterologists are now following this rule in the UK more and more with children, so I am not surprised your daughter is not having an endoscopy.   Switching to a gluten free diet should begin to help, but also, even if you have to have testing done privately, it would be very helpful for you to find out if your daughter has vitamin and mineral deficiencies, which is highly likely,    In the UK tests are generally offered on the NHS for B12 and ferritin, and sometimes vitamin D.  Shortages in these can really cause any anxiety or depression or ramp it up. If you do end up supplementing, make sure your GP is aware as levels do need to be monitored, for example,  too much ferritin can cause huge health issues. Re: anxiety, definitely speak to a GP or another health care professional about this if it is an issue. Hopefully the Coeliac Society of Ireland will also be able to help. Cristiana  
    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Help understand results

      By trents · Posted

      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      Help understand results

      By mamaof7 · Posted

      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.