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DH Help

mgm96

By mgm96
in Dermatitis Herpetiformis

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mgm96 Newbie
mgm96
Posted

Hi everyone, I’m hoping I can get some guidance here. 

Two years ago I saw a naturopath for some gastro issues, among others. She made the connection between them and the EXTREMELY itchy rash I’d been experiencing, telling me it was possibly celiac/DH. All the blood work she ordered came back negative for celiac, but there was evidence in the tests of lots of inflammation in my body. I also noticed the rash getting slightly better when I did a gluten-free diet for a few weeks.

Because I still live/eat with my family at home they won’t take this diagnosis seriously without it being confirmed by my normal doctor. So after bringing up everything the naturopath said to my GP, she wrote it off as eczema and IBS. Since then I’ve been stuck in this cycle of my doctor prescribing a new steroid cream every time I see her and finding no relief at all. I’ve finally convinced her to refer me to a dermatologist and after a phone visit I have a biopsy scheduled for the end of this month. 

I’m hopeful describing my symptoms and seeing the rash in person will lead the derm to consider DH. But my question is, do I have to bring up DH/celiac or will the biopsy prove the rash isn’t eczema on its own? 

I fear my thoughts on what’s going on will just be written off automatically because they’re coming from a naturopath, as that was my GP and families reaction.

Any thoughts/ideas/advice is much appreciated.

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trents Grand Master
trents
Posted
(edited)

I wouldn't hesitate to mention to the dermatologist that you have been having gastro issues and are wondering if you might have celiac disease. Helping the dermo doc make that possible connection will help eliminate the possibility of a missed DH/celiac disease diagnosis.

What blood work did the naturopath order? What specific tests? Do you have a record of it and can you post the tests and test results on this forum? It may be that the most helpful ones were not included in the order.

I would do some research on the blood tests that can be done for celiac disease (a "full celiac panel"), print it out and give it to your GP if you suspect celiac disease.

This might help:

Some of the blood tests are more specific for celiac disease but less sensitive. Some are more sensitive but less specific.

Edited by trents
Scott Adams Grand Master
Scott Adams
Posted

Any chance you could share your last celiac test results with us? 

mgm96 Newbie
mgm96
Posted
  • Author
10 minutes ago, trents said:

I wouldn't hesitate to mention to the dermatologist that you have been having gastro issues and are wondering if you might have celiac disease. Helping the dermo doc make that possible connection will help eliminate the possibility of a missed DH/celiac disease diagnosis.

What blood work did the naturopath order? What specific tests? Do you have a record of it and can you post the tests and test results on this forum? It may be that the most helpful ones were not included in the order.

I would do some research on the blood tests that can be done for celiac disease (a "full celiac panel"), print it out and give it to your GP if you suspect celiac disease.

This might help:

Some of the blood tests are more specific for celiac disease but less sensitive. Some are more sensitive but less specific.

Thanks so much for your reply! I can’t seem to access the results, but I can see if they are “flagged” or not. My IGA, TTG-IGA and Gliadin IGA are normal. But my ANA was high and I remember her saying untreated celiac can cause this if no other auto-immune diseases are present. 

mgm96 Newbie
mgm96
Posted
  • Author
5 minutes ago, Scott Adams said:

Any chance you could share your last celiac test results with us? 

I don’t have my exact results but I can see if they are “flagged” or not. My IGA, TTG-IGA and Gliadin IGA are normal. But my ANA was high and I remember the naturopath I saw saying untreated celiac can cause this if no other auto-immune diseases are present

Scott Adams Grand Master
Scott Adams
Posted

Unfortunately, "normal" according to many doctors might be a TTG score of 8, when the cut-off for celiac disease is <9. Having a score of 8 in this case, in my opinion, is not normal. Perhaps you can ask your doctor for the exact results, along with the cut-off markers for a positive test? To me, many of these "normal" results may still indicate gluten sensitivity.

tanya l Newbie
tanya l
Posted
On 3/20/2021 at 9:53 PM, mgm96 said:

Hi everyone, I’m hoping I can get some guidance here. 

Two years ago I saw a naturopath for some gastro issues, among others. She made the connection between them and the EXTREMELY itchy rash I’d been experiencing, telling me it was possibly celiac/DH. All the blood work she ordered came back negative for celiac, but there was evidence in the tests of lots of inflammation in my body. I also noticed the rash getting slightly better when I did a gluten-free diet for a few weeks.

Because I still live/eat with my family at home they won’t take this diagnosis seriously without it being confirmed by my normal doctor. So after bringing up everything the naturopath said to my GP, she wrote it off as eczema and IBS. Since then I’ve been stuck in this cycle of my doctor prescribing a new steroid cream every time I see her and finding no relief at all. I’ve finally convinced her to refer me to a dermatologist and after a phone visit I have a biopsy scheduled for the end of this month. 

I’m hopeful describing my symptoms and seeing the rash in person will lead the derm to consider DH. But my question is, do I have to bring up DH/celiac or will the biopsy prove the rash isn’t eczema on its own? 

I fear my thoughts on what’s going on will just be written off automatically because they’re coming from a naturopath, as that was my GP and families reaction.

Any thoughts/ideas/advice is much appreciated.

Hello!

I saw a dermatologist for confirmation of what my Naturopathic Dr said was DH but the initial derm I saw didn't even know what it was...just a suggestion to call the dermatologist office first and make sure that Dr is familiar with DH specifically.  I found one who has given me much more logical answers for this maddening condition.  The test that they ran for a biopsy was definitively DH, so there wasn't confusion that it could be eczema.  

Best wishes to you on your healing journey.  

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mgm96 Newbie
mgm96
Posted
  • Author
On 3/21/2021 at 12:07 PM, Scott Adams said:

Unfortunately, "normal" according to many doctors might be a TTG score of 8, when the cut-off for celiac disease is <9. Having a score of 8 in this case, in my opinion, is not normal. Perhaps you can ask your doctor for the exact results, along with the cut-off markers for a positive test? To me, many of these "normal" results may still indicate gluten sensitivity.

I was able to get my results from my doctor and have listed them below! 
 

IGA Reflexive - 133 (>378 is positive)

TTG-IGA - 2.97 (>20 is positive) 

Deaminated Gliadin IGA - 5 (<20 antibody not detected)

Deaminated Gliadin IGG - 2 (<20 antibody not detected) 

52 minutes ago, tanya l said:

Hello!

I saw a dermatologist for confirmation of what my Naturopathic Dr said was DH but the initial derm I saw didn't even know what it was...just a suggestion to call the dermatologist office first and make sure that Dr is familiar with DH specifically.  I found one who has given me much more logical answers for this maddening condition.  The test that they ran for a biopsy was definitively DH, so there wasn't confusion that it could be eczema.  

Best wishes to you on your healing journey.  

I think I’ll give them a call, I’m worried they won’t know what I’m talking about when I bring it up. But I’m hopeful the biopsy will at least rule out eczema. 

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