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

What blood tests best for DH?

Jane87

By Jane87
in Dermatitis Herpetiformis

Recommended Posts

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?

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

Celiac.com Sponsor (A8-M):


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).  

Open Original Shared Link

 

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).  

Open Original Shared Link

 

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

Open Original Shared Link

Hope you get diagnosed.

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

Celiac.com Sponsor (A8-M):


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:

Open Original Shared Link

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!! 

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. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    2. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    3. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    4. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    5. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,859
    • Most Online (within 30 mins)
      7,748
    Santa Don
    Newest Member
    Santa Don
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.