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What blood tests best for DH?

Jane87

By Jane87
in Dermatitis Herpetiformis

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Jane87 Explorer
Jane87
Posted

Hi all!

I've had invaluable feedback on my first post "Look like DH? Bilateral Itchy Bumpy Elbows" where I've outlined my symtpoms and family history. My elbows are in "remission" following 5 weeks of bumpy rash, just in time for me to attend my Dr appointment on Wednesday. Luckily I have lots of pictures of elbows and other rashes and I've learnt a lot from this forum. My question is now, what blood tests should I request from my Dr as they won't be able to biopsy my rash currently and I can't predict when it will come back next (with a vengence no doubt). Are the blood tests for DH different to those for "classic presentation" Celiac? I've heard it's your IgA and TCG; have I got that right?

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cyclinglady Grand Master
cyclinglady
Posted

Push for all the celiac blood tests: TTG IgA and IgG, EMA, and DGP IgA and IgG.  Make sure they test your Immunoglobulin A (IgA) which in the case for celiac disease acts as a control test.  Note:  you have to be on a gluten diet for any of the tests to work (like 12 weeks).  

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Jane87 Explorer
Jane87
Posted
  • Author
53 minutes ago, cyclinglady said:

Push for all the celiac blood tests: TTG IgA and IgG, EMA, and DGP IgA and IgG.  Make sure they test your Immunoglobulin A (IgA) which in the case for celiac disease acts as a control test.  Note:  you have to be on a gluten diet for any of the tests to work (like 12 weeks).  

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Thanks for that info. Really helpful. I've been eating gluten everyday for about 4 weeks now and prior to me even considering DH I was regularly eating gluten unaware that it could be the problem! 

cyclinglady Grand Master
cyclinglady
Posted

Okay, I am a little confused.  You really need to be a full gluten diet for up to 8 to 12 weeks.  That is because researchers can not tell how fast an individual builds up antibodies that can be measured in their bloodstream.  If you get a negative now, will your doctor re-test?  Will your insurance pay for it again?  

Jane87 Explorer
Jane87
Posted
  • Author

I've been watin

6 minutes ago, cyclinglady said:

Okay, I am a little confused.  You really need to be a full gluten diet for up to 8 to 12 weeks.  That is because researchers can not tell how fast an individual builds up antibodies that can be measured in their bloodstream.  If you get a negative now, will your doctor re-test?  Will your insurance pay for it again?  

I've been eating gluten my whole life  (pretty much) and I meant that the last 4 weeks especially (when my rash was flared up again and I was led the possibility of DH) I've eaten more gluten then normal everyday in preparation for getting tested at some point as I've read here that you need to eat gluten daily for the tests to work. I'm only seeing a Dr for an initial app on Wednesday, they won't conduct testing on the same day, I'll need to be booked in for bloods. I'm in the UK so I won't be paying for any of these tests. I just have been trying to gather information ahead of my Drs appointment so that they will refer me for Celiac testing. Hope that makes sense.

cyclinglady Grand Master
cyclinglady
Posted
5 hours ago, Jane87 said:

I've been watin

I've been eating gluten my whole life  (pretty much) and I meant that the last 4 weeks especially (when my rash was flared up again and I was led the possibility of DH) I've eaten more gluten then normal everyday in preparation for getting tested at some point as I've read here that you need to eat gluten daily for the tests to work. I'm only seeing a Dr for an initial app on Wednesday, they won't conduct testing on the same day, I'll need to be booked in for bloods. I'm in the UK so I won't be paying for any of these tests. I just have been trying to gather information ahead of my Drs appointment so that they will refer me for Celiac testing. Hope that makes sense.

Yes!  ?

knitty kitty Grand Master
knitty kitty
Posted

Playing the devil's advocate.....if you want to have a DH outbreak, eat foods high in iodine, such as seaweed or kelp, strawberries, cranberries, turkey, shrimp and dairy products like cheese and yogurt, or even idolized salt.

I had really bad DH outbreaks after eating rye breads and thick chewy pizza crust.  

Here's a couple of articles that might help.

https://www.celiac.com/articles/177/1/The-Gluten-Intolerance-Group-of-North-America-on-Iodine-and-Dermatitis-Herpetiformis/Page1.html

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Hope you get diagnosed.

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Jane87 Explorer
Jane87
Posted
  • Author
19 hours ago, knitty kitty said:

Playing the devil's advocate.....if you want to have a DH outbreak, eat foods high in iodine, such as seaweed or kelp, strawberries, cranberries, turkey, shrimp and dairy products like cheese and yogurt, or even idolized salt.

I had really bad DH outbreaks after eating rye breads and thick chewy pizza crust.  

Here's a couple of articles that might help.

https://www.celiac.com/articles/177/1/The-Gluten-Intolerance-Group-of-North-America-on-Iodine-and-Dermatitis-Herpetiformis/Page1.html

Open Original Shared Link

Hope you get diagnosed.

Thank you for the tips! Fingers crossed at the Drs app tomorrow they'll refer me for the bloods and/or biopsy and I'll continue on my gluten and add more iodine in the waiting time leading up!

squirmingitch Veteran
squirmingitch
Posted

Be forewarned & print this article out & take it to the doc with you.

Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease. However, they almost always have the same, gluten-dependent intestinal damage as those with the more common symptoms of celiac disease. 

From:

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To reiterate...... that is 60% of those with dh test negative on the celiac serum panel.

Jane87 Explorer
Jane87
Posted
  • Author
17 hours ago, squirmingitch said:

Be forewarned & print this article out & take it to the doc with you.

Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease. However, they almost always have the same, gluten-dependent intestinal damage as those with the more common symptoms of celiac disease. 

From:

Open Original Shared Link

To reiterate...... that is 60% of those with dh test negative on the celiac serum panel.

Thank you squirmingitch  I had my Drs app on Wednesday, it was over in 5 minutes after he looked at my pictures,heard my family history he booked me in for bloods for Coeliac and Hashimotos in the New Year. I'll wait and see what the results are (should have them by mid January) and I'll book a Drs app to discuss my results whatever they may be. I'll be prepared to press for further testing for sure!! 

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