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This may sound crazy... (can you trigger a DH flare in order to get a biopsy)

cnazrael89

By cnazrael89
in Dermatitis Herpetiformis

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cnazrael89 Enthusiast
cnazrael89
Posted

I had a positive tTg-IgA of 11 U/mL (0-3 standard range, 4-10 weak positive, 11 and greater positive), have been experiencing multiple symptoms off and on throughout the years. I had my GI consult and scheduled for EGD with biopsy.

One of the symptoms I have had off and on for many years is a skin rash that flares up randomly and I couldn't correlate anything to the specific flares of the itchy, red, bumpy rash that lasts for months and then goes away. I'm still on a gluten containing diet (and always have been) as I'm pending EGD/more bloodwork possibly. 

For those who have dermatitis herpetiformis; I'm curious if anyone has any ideas of how to make it flare up while still on a gluten containing diet and not seeming to be directly linked to specific gluten ingestion per se. I know that DH is obviously due to gluten but since I have always been on gluten and don't have rashes popping up constantly I was wondering if there is a way to exacerbate a rash or trigger a DH flare if that is indeed what I have flaring up at times.

If these rashes were DH, would I be having them much more consistently or have you heard of DH kind of popping up here and there with no rhyme or reason while on a gluten containing diet prior to being diagnosed with DH?

I know that sounds a little crazy but now that I know I could have a biopsy around the area of the rash when it erupts and it could potentially be DH I am curious (and would give me more confidence in a diagnosis of Celiac). The problem is, the rashes have never been very consistent but once they appear are here to stay for months on end. Anyone ever been through anything like this or tried to make a DH like rash flare up in order to have it biopsied?? I may be a little bonkers for asking this question!! Yikes! Thanks to anyone who reads this!

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Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum!

First, you have a positive tTg-IgA test for celiac disease, so there is a very high chance that you have celiac disease, which would mean that the rash you've described is very likely DH. To me it sounds like you might be trying to find another explanation for your rash, but given the evidence you presented, including your symptoms, it sounds like the best explanation.

In some people with DH iodine, which is found in seafoods, seaweed, iodized salt, and dairy products can also be a trigger. 

Be sure to eat at least 2 slices worth of wheat bread per day until you biopsy or any further blood tests for celiac disease are completed.

cnazrael89 Enthusiast
cnazrael89
Posted
  • Author

Thank you so much for reading and replying to my post! After reading many others' stories and examples of rashes etc. on here I am fairly confident the occasional rashes I described above are DH.

I guess I'm not so much trying to find other explanations for the rash but in fact trying to get more confirmation to support a Celiac diagnosis. In my mind, if I could produce a DH (potentially) flare up and was able to get a biopsy of it and show as DH it would give me that "slam dunk" feeling for the diagnosis. The EGD with biopsies I'm scheduled for could be a slam dunk on the diagnosis but I guess I was looking for an alternative option if the EGD isn't blatantly obvious. I would have zero problems with going gluten free based on tTg-IgA positivity and an inconclusive EGD given I have multiple symptoms and a strong family history for Celiac but I think it would be harder to explain the absolute need to be 100% strict gluten free life to my wife if I don't have the "definite" answer/diagnosis. That I think is the main reason for the questions I've posed on this post. Thank you for the information above!

Scott Adams Grand Master
Scott Adams
Posted

This article is older, but still accurate:

Quote

In clinical trials, the IgA antibodies have a specificity of 97% but the sensitivity is only 71%. That means that, if a patient is IgA positive, there is a 97% probability that they have celiac disease. 

 

shadycharacter Enthusiast
shadycharacter
Posted
19 hours ago, cnazrael89 said:

I had a positive tTg-IgA of 11 U/mL (0-3 standard range, 4-10 weak positive, 11 and greater positive), have been experiencing multiple symptoms off and on throughout the years. I had my GI consult and scheduled for EGD with biopsy.

One of the symptoms I have had off and on for many years is a skin rash that flares up randomly and I couldn't correlate anything to the specific flares of the itchy, red, bumpy rash that lasts for months and then goes away. I'm still on a gluten containing diet (and always have been) as I'm pending EGD/more bloodwork possibly. 

For those who have dermatitis herpetiformis; I'm curious if anyone has any ideas of how to make it flare up while still on a gluten containing diet and not seeming to be directly linked to specific gluten ingestion per se. I know that DH is obviously due to gluten but since I have always been on gluten and don't have rashes popping up constantly I was wondering if there is a way to exacerbate a rash or trigger a DH flare if that is indeed what I have flaring up at times.

If these rashes were DH, would I be having them much more consistently or have you heard of DH kind of popping up here and there with no rhyme or reason while on a gluten containing diet prior to being diagnosed with DH?

I know that sounds a little crazy but now that I know I could have a biopsy around the area of the rash when it erupts and it could potentially be DH I am curious (and would give me more confidence in a diagnosis of Celiac). The problem is, the rashes have never been very consistent but once they appear are here to stay for months on end. Anyone ever been through anything like this or tried to make a DH like rash flare up in order to have it biopsied?? I may be a little bonkers for asking this question!! Yikes! Thanks to anyone who reads this!

You mentioned in another thread how the rash had reappeared after you had handled kelp on the beach. Perhaps because seaweed is rich in iodine, which can trigger DH? You could always try that again. If it doesn't work, at least you got a day on the beach. :)

cnazrael89 Enthusiast
cnazrael89
Posted
  • Author
4 minutes ago, shadycharacter said:

You mentioned in another thread how the rash had reappeared after you had handled kelp on the beach. Perhaps because seaweed is rich in iodine, which can trigger DH? You could always try that again. If it doesn't work, at least you got a day on the beach. :)

I did wonder if that was legit or not! Seems to be a strong possibility now that I know about the Iodine connection! Too bad there are no beaches near Wyoming! I'm so curious now! I thought it was a weird allergic reaction when it happened, to be honest! Thank you! 

Rogol72 Collaborator
Rogol72
Posted
8 hours ago, cnazrael89 said:

I did wonder if that was legit or not! Seems to be a strong possibility now that I know about the Iodine connection! Too bad there are no beaches near Wyoming! I'm so curious now! I thought it was a weird allergic reaction when it happened, to be honest! Thank you! 

I can confirm that dietary iodine does exacerbate DH along with omega 3 fish oil and cod liver oil ... it causes random pin pricks on the skin and itching.

Here's a case report ... 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6698721/

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cnazrael89 Enthusiast
cnazrael89
Posted
  • Author
6 hours ago, Rogol72 said:

I can confirm that dietary iodine does exacerbate DH along with omega 3 fish oil and cod liver oil ... it causes random pin pricks on the skin and itching.

Here's a case report ... 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6698721/

Thanks for that!

  • 1 month later...
cnazrael89 Enthusiast
cnazrael89
Posted
  • Author

Well I just got my pathology report! I do indeed have Celiac Disease. Appears as though I've gone undiagnosed for some time. Haven't talked to a doctor about the report yet as I stumbled upon it on my patient portal. Doesn't give a Marsh classification but from what I can gather Marsh 3b?? It doesn't go into IEL ratios or whatever in the report. I have attached 2 snip-its of my pathology report for your review and thoughts on it! Thanks in advance.

P.s. I will post this in the other threads I started too so I apologize if you see it twice.

Screenshot_20221104_082012.webp.3b114df67b49b46f95fae50c9e286984.webpScreenshot_20221104_081055.webp.ae7c5aba81b882fc713f337fd169d870.webp

Scott Adams Grand Master
Scott Adams
Posted

 

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