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Could This Be Dh?

LcatS

By LcatS
in Dermatitis Herpetiformis

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LcatS Newbie
LcatS
Posted

I am in my early 60's and just heard from a sister that she was diagnosed with Celiac. I have never had digestive issues with gluten and so was not concerned. I did browse the internet to read about symptoms and when I learned about DH, it struck a nerve. For about the last 20 years, I have been having episodes of very very itchy bumps on my upper hands and fingers. It only shows up on the tops of my hands and I can go months between episodes.

I have been taking allergy shots forever due to my being allergic to my cats and so I thought that it was just another allergic reaction to my cats saliva. But now I am wondering if it might be DH. If I understand correctly, I would have to go running to my dermatologist when they appear, and before I scratch - almost impossible since they are SO ITCHY!

I took a couple shots of what my hand looked like this last time, after I had scratched a lot. The only thing I find that works is some left over lidocaine patches that I still have from when I had shingles a couple years ago. I cut them to size and then wrap my hand in gauze to keep the patch in place and then leave on for about a day.

What do you think?

 

Okay, it seems that I can't upload pictures. Someone tell me how to do that, please.

 

Thanks

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kareng Grand Master
kareng
Posted

If your sister was diagnosed with Celiac, your doctor is supposed to do a Celiac blood panel.  Maybe try that first?

 

 

Open Original Shared Link

LcatS Newbie
LcatS
Posted
  • Author

I am seeing my Dr for follow-up on something else for a blood test, and I will ask then, But that is in January.

Was just wondering if this appeared to be relevant to Celiac

kareng Grand Master
kareng
Posted

It could be DH.  But you didn't seem to keen on the idea of going to the Derm to get them tested.  So I thought maybe start with the Celiac blood work and see what happens.  Keep eating gluten to get the most accurate results.  Sometimes, people with DH don't test positive on the blood, so then you could pursue the dermatologist option.

LcatS Newbie
LcatS
Posted
  • Author

Oh, I'm not against going to the dermatologist. Its just so hard to get an appointment, and combining that will trying to get a same day look, seems overwhelming!

Can I upload pictures?

squirmingitch Veteran
squirmingitch
Posted

To upload photos (last time I did it) go to Flickr

Open Original Shared Link

 

Or Photobucket

Open Original Shared Link

 

And read this thread on how to post photos:

https://www.celiac.com/forums/topic/104676-posting-photos/

 

Most of us with dh have mild GI symptoms that we never consider "digestive issues" even though we still get GI damage. We also tend to test negative on the celiac blood panel 60% of the time but it's worth a shot to see. The best way for us to get a dx is a skin biopsy for dh by a derm who really knows what they're doing. It must be taken on clear skin adjacent to a fresh lesion & most derms take it right on the lesion (shaking head). As Karen said, keep eating a full gluten diet until you get the results back & are sure no doc is going to want to do more testing. No steroid usage for 2 months prior to any tests. 

 

Since your sister is dx'd it's entirely possible your hand rash is dh. The derm will most likely tell you it is not b/c it's not on your knees or elbows but dh can & does appear anywhere on the body. Itches like bloody mad!!!!! Bilateral in nature echoing itself on each side of the body ie the backs of both your hands. 

 

Are your allergy shots steroids? If so, you'll have to stay off them for 2 months prior. 

squirmingitch Veteran
squirmingitch
Posted
Oh, & here is the current full celiac blood panel. If the doc does any less then it's not a correct celiac panel. 
 
 
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
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LcatS Newbie
LcatS
Posted
  • Author

To upload photos (last time I did it) go to Flickr

Open Original Shared Link

 

Or Photobucket

Open Original Shared Link

 

And read this thread on how to post photos:

https://www.celiac.com/forums/topic/104676-posting-photos/

 

Most of us with dh have mild GI symptoms that we never consider "digestive issues" even though we still get GI damage. We also tend to test negative on the celiac blood panel 60% of the time but it's worth a shot to see. The best way for us to get a dx is a skin biopsy for dh by a derm who really knows what they're doing. It must be taken on clear skin adjacent to a fresh lesion & most derms take it right on the lesion (shaking head). As Karen said, keep eating a full gluten diet until you get the results back & are sure no doc is going to want to do more testing. No steroid usage for 2 months prior to any tests. 

 

Since your sister is dx'd it's entirely possible your hand rash is dh. The derm will most likely tell you it is not b/c it's not on your knees or elbows but dh can & does appear anywhere on the body. Itches like bloody mad!!!!! Bilateral in nature echoing itself on each side of the body ie the backs of both your hands. 

 

Are your allergy shots steroids? If so, you'll have to stay off them for 2 months prior. 

No, allergy shots are generally not steroids. In my case, it is a mixture of cat, trees, house dust, etc. And I could not stop. If I stopped for 2 months, I would have to start over and go weekly to build up a tolerance to get them once again monthly.

LcatS Newbie
LcatS
Posted
  • Author

Here are my two pictures -

 

http://i1311.photobucket.com/albums/s680/LorSmi/copier/IMG_9385_zpsb068b358.webp

http://i1311.photobucket.com/albums/s680/LorSmi/copier/IMG_9386_zps77a27fda.webp

 

Hope this works!

squirmingitch Veteran
squirmingitch
Posted

That looks similar to my husbands who has a bad case of it on hands & fingers. His used to be much, much worse. It's really hard to tell b/c dh really can take so many forms as is evidenced by the sticky at the top of the dh forum. At any rate, you really need to get tested since your sister has celiac & it is a genetic disease. Odds are......  Plus people with celiac disease tend to have skin issues & rashes of numerous kinds/types AND we tend to have allergies. Allergies can get much better & some even go away once we go gluten free. Just FYI. 

Please make sure your sister checks out the Newbie 101 on this board.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

It's not just as simple as "thinking" you are gluten free. There are issues with kitchen items and things you might think are gluten free but are not such as Quaker oats. Celiacs have to have certified gluten free oats, grown in dedicated fields, harvested on clean equipment & processed in clean facilities. 

SMRI Collaborator
SMRI
Posted

 

 

When you click on your photos, it shows your hand photo in an ad for a Christmas card LOL.

 

Your rash looks very similar to one I get.  I've always attributed it to dry skin, not wearing rubber gloves when I do dishes, that kind of thing.  I have two spots on my hand that are almost always present now, to varying degrees of itchiness/pain.  Before I had my diagnosis, my dermatologist said it was a Prurigo nodule.  It looks nothing like the photos on google of a Prurigo nodule however.  So, after meeting with my endo, she suspects it's probably DH, now that I have a celiac diagnosis but I've never been tested for DH.  I recently developed a rash along my ankles that is extremely itchy so now I'm really wondering.

 

I would start by wearing rubber gloves any time you are cleaning/washing dishes, etc. Get a good hand lotion and wear gloves when you go outside if you live somewhere that is cold.  See if that helps.  If not, maybe get a biopsy to see if it is DH. 

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