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6 Year Old With Possible Dh, I Am Attaching Pictures.

dermatitis herpetiformis children with celiac

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13 replies to this topic

#1 mommiof3boys

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Posted 01 April 2014 - 08:11 PM

My son is 6 and he came down with a really bad rash in December so we went to the Dr, they thought it was Staph, but it was not. We then went to the Dermatologist and she thought it was DH and told us to go Gluten Free and then we went back for the biopsy and she said that it looked so much better that we could just skip the biopsy. He then started really complaining of a tummy ache, pretty much every night and sometimes during the day. So our pediatrician sent us to a Peds GI and they wanted the biopsy done, I had taken photos to show them, because he did not have the rash at the time. Biopsy came back negative, I do not know if it was because it was not active or if he does not have it? Well last week the he had two spots that were getting really red, so I took him to the dermatologist, and he said that looks like classic molluscum, well it exploded right now it is on his face, knees, elbows, feet, and hands. He also has spots all over. I guess I am just wondering what everyone else on here thought. I am new and would like to post a picture, but I am not sure how. Thanks.
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#2 squirmingitch

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Posted 02 April 2014 - 09:33 AM

Okay, so the derm thought it was dh & told you to take him gluten-free yet had NOT done a biopsy yet. So she was going to do the biopsy AFTER he had been gluten-free for how long????? I realize she did not do the biopsy but right there we have a problem. One needs to be eating gluten right up until the biopsy is taken, not stopped a week before or 2 days before or 1 day before. And ideally, gluten should be eaten until the results come back just in case there was a glitch & the biopsy was unreadable or unclear for some reason & another biopsy needs to be taken. 

So are you saying that the dh biopsy was finally done? And it came back negative? Did you change derms? 1st you call the derm a she & the second time you say he, so I'm not sure if you went to 2 different derms. Of course, a dh biopsy would come back negative b/c your son had been gluten free. These people are trying to biopsy something when they can only come back with a negative or false negative result. They don't fully know what they are doing. A dh biopsy must be taken adjacent --- that's ADJACENT to an ACTIVE lesion. 

 

Have you Googled photo of molluscum? You should, & see if what your son has looks like that. Here's one link, scroll down to the photos.

http://www.healthlin...giosum#Symptoms

 

Is this rash terribly itchy? Bilateral?

 

To post a photo, you need to create a Flicker account or a PhotoBucket account & then you can download photos from there.


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#3 mommiof3boys

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Posted 02 April 2014 - 10:49 AM

Ok I guess I was not that clear.  Trying to get all the information in one post.  The first derm in the same office was a PA.  We were off of gluten for about 6 weeks, the rash went away but he was having stomach aches all the time and he did not have this before the rash.  So we went to our PCP and she wanted him to go back on gluten to get tested and we did.  He has been eating gluten for since the middle of January.  We have an EGD next Wednesday, but yes she did the biopsy when he was on gluten and it came back negative for IGA, but I found out today from the dr that it came back as positive for IGM and CS.  We ended up seeing a Dr instead of the PA and he did another biopsy, this time it is of the more active rash.  He said that he is 70-80 % positive it is Dermatitis Herpetiformis.  He said in all his years of practice that this is one case he is sure that it is DH.  We will see, but we are on Gluten for now and we have the skin biopsy done and the EGD coming up.

 

 

https://flic.kr/ps/2RWf8b


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#4 bluewhitesky

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Posted 02 April 2014 - 10:53 AM


 

To post a  photo I uploaded it from my computer to google+ (or you could use flikr, or any other web-based photo site). Then from the online photo you right click and choose "copy url" or "copy image url". Then when you are in your post you click the "image" icon- little white/green square. It will ask you for the image url, you just paste it in.

 

***oops I think you posted your picture before my comment was approved! Off to have a look!


Edited by bluewhitesky, 02 April 2014 - 11:00 AM.

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#5 bluewhitesky

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Posted 02 April 2014 - 11:08 AM

I looked at your pictures. It looks awful. Poor little guy. He's lucky to have you to be on top of it. What is IGM and CS? How much longer until you can take him off gluten again?

I'm glad your Dr. recognized it as DH. It sure doesn't look like molluscum. 


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#6 mommiof3boys

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Posted 02 April 2014 - 11:27 AM

I looked at your pictures. It looks awful. Poor little guy. He's lucky to have you to be on top of it. What is IGM and CS? How much longer until you can take him off gluten again?

I'm glad your Dr. recognized it as DH. It sure doesn't look like molluscum. 

  Thanks, he has to be on gluten for at least a week and a half, maybe longer.  IGM, what the dr (Derm) said it was is that is the first step and then it can go into the other IG..(possibly IGA).  We were told that the biopsy came back as having ezcema and this dr said no way.  I have no idea what CS is.  I hope you get answers for you little one too.  


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#7 squirmingitch

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Posted 02 April 2014 - 02:26 PM

Awwwwwwww man! I know how that ear burns!!! And itches. Burns & itches all at one time. It's really hard looking at that on a child. 

 

Okay, now things are much more clear. Don't worry about it ~~~ it is intimidating to try to explain everything the first time you post. 

 

There are a few reasons the tummy ache could come after going gluten-free. One would be that when we first go gluten-free; our bodies go through gluten withdrawal (most of us but not all) & that's a rough, rough time for many of us, resulting in a myriad of "ailments". Another is when we go gluten free, our body goes whacky trying to readjust. If you read posts on the Post dx forum here, you will see that many people actually seem to get worse for a while. The body is going through a big upheaval. Quite a few people will develop additional food intolerances which mostly clear up in time. 

 

Great big (((((HUGS))))) to both you & your son. Poor little fella.

Please let us know how things turn out.


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#8 mommiof3boys

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Posted 07 April 2014 - 06:24 PM

Hi,  My son's biopsy came back as having IGM in it.  The dermatologist said that he thought it could be a nickel allergy, does anybody know anything about that?

 

Thanks


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#9 squirmingitch

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Posted 08 April 2014 - 03:07 PM

Here are some links I Googled.

http://www.webmd.com...jewelry-allergy

 

http://www.mayoclini...on/con-20027616


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#10 mommiof3boys

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Posted 08 April 2014 - 04:20 PM

I really have my doubts that is what it is. He does not wear jewelry and it is in spots that I have not seen as spots for a nickel allergy.
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#11 IrishHeart

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Posted 08 April 2014 - 06:56 PM

Hi,  My son's biopsy came back as having IGM in it.  The dermatologist said that he thought it could be a nickel allergy, does anybody know anything about that?

 

Thanks

 

 

A test for immunoglobulins (antibodies) in the blood is done to:

  • Find certain autoimmune diseases or allergies.
  • Find certain types of cancer (such as multiple myeloma or macroglobulinemia).
  • See whether recurring infections are caused by a low level of immunoglobulins (especially IgG).
  • Check the treatment for certain types of cancer affecting the bone marrow.
  • Check the treatment for Helicobacter pylori (H. pylori) bacteria.
  • Check the response to immunizations to see if you are immune to the disease.
  • Check to see if you have an infection or have had it in the past.

So the dermatologist just saying his blood has IGM in it means nothing  very specific.


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#12 mommiof3boys

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Posted 10 April 2014 - 05:20 PM

The IGM was actually in the skin, sorry I was not more clear. 

 

I do not know other than what I have read but are the chances of it being negative really high, he has only had the rash twice in the last 5 months and the first time that he developed the rash was in December.

 

Thanks


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#13 mommiof3boys

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Posted 22 April 2014 - 05:27 PM

Hi, I have a question for u.  We received the GI biopsy and that was what they call "Unremarkable".  I believe that both skin biopsies that the derm ran were done wrong.  The last one i believe was definitely done wrong, they did not take a biopsy on clean non affected skin, am I correct that they need to do that to do the biopsy correctly.  

 

We also did a home Nickel test, we taped a nickel (cleaned of course) and taped it to his back.  No rash or bumps at all.

 

Thanks again for all of your knowledge that you pass on.


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#14 squirmingitch

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Posted 23 April 2014 - 05:34 AM

Oh you're so welcome!

Good thinking to test the nickel! Now you can tell them to take that dx & shove it!

 

They did the dh biopsy wrong. It has to be taken on clear skin adjacent to an active lesion. And if there's any way possible, keep him from scratching there before hand. What the lab is looking for is very easily destroyed with scratching. I would at least suggest you could put a big square of very thick gauze pad over the entire area so at least if he scratches, maybe it won't destroy what they're looking for. And they must specify to the lab that they are looking for dh. The ideal situation would be if they would take 2 biopsies & send each to a different lab. Good luck getting them to do all that right.


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 




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