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Could this be DH?

Scd

By Scd
in Dermatitis Herpetiformis

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Scd Newbie
Scd
Posted

Hi everyone. I hope someone with experience can help me. I have the symptoms of celiac yet my blood test comes Back negative. I have this persistent spots/rash on my toes and often on my fingers - does anyone think this is worth investigating with a biopsy to see if celiac is present? Or should I trust negative bloods and see the rash as some form of eczema?

thank you 🙏 image.webp.4f407ae46f4cee0a4da69ff4adea6a16.webp

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cristiana Veteran
cristiana
Posted

Hello Scd

Welcome to the forum.

If you can get a biopsy that would be the best way forward as not only will it rule in/out DH, you may find you have something else altogether.  It would be a shame to have to adopt a special gluten free diet if you didn't have to.

I suffer from a mystery rash myself  and am thinking of having a biopsy done.  My doctor thinks its eczema but I'd like to know for sure.  And I've been on a gluten free diet for years.

Cristiana

 

trents Grand Master
trents
Posted
  On 5/18/2021 at 1:29 PM, Scd said:

Hi everyone. I hope someone with experience can help me. I have the symptoms of celiac yet my blood test comes Back negative. I have this persistent spots/rash on my toes and often on my fingers - does anyone think this is worth investigating with a biopsy to see if celiac is present? Or should I trust negative bloods and see the rash as some form of eczema?

thank you 🙏 image.webp.4f407ae46f4cee0a4da69ff4adea6a16.webp

Expand Quote  

By some chance were you already eating gluten free before the testing?

Scd Newbie
Scd
Posted
  • Author

Not particularly unfortunately, I eat bread or pasta most days. I find the rash comes up a couple of days after eating something big with gluten like a pizza. 

  On 5/18/2021 at 1:41 PM, cristiana said:

Hello Scd

Welcome to the forum.

If you can get a biopsy that would be the best way forward as not only will it rule in/out DH, you may find you have something else altogether.  It would be a shame to have to adopt a special gluten free diet if you didn't have to.

I suffer from a mystery rash myself  and am thinking of having a biopsy done.  My doctor thinks its eczema but I'd like to know for sure.  And I've been on a gluten free diet for years.

Cristiana

 

Expand Quote  

Thank you for your reply. I think the biopsy is the way to go, it will determine if it’s gluten related once and for all. 

trents Grand Master
trents
Posted
(edited)
  On 5/18/2021 at 2:10 PM, trents said:

By some chance were you already eating gluten free before the testing?

Expand Quote  

I was asking because unless you are eating a significant amount of gluten daily, or most days, then the testing may be invalid. And that applies both to the blood antibody test and the upper GI scope with biopsy.

Edited by trents
Scd Newbie
Scd
Posted
  • Author

This is super helpful - thank you - how much do you think is a significant amount for a test to be valid if gluten is the problem?

trents Grand Master
trents
Posted

The guideline is the equivalent of two slices of wheat bread per day.

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Scd Newbie
Scd
Posted
  • Author

I appreciate your help, thank you

  • 1 month later...
justthemom Rookie
justthemom
Posted

I have this on my fingers. It was diagnosed by my dermatologist as dishydrotic eczema, and I was given a strong steroid cream to treat it. I have no issues with gluten, I am on this board for the sake of my daughter, but I don’t know if it could be triggered by gluten in others. Mine is triggered by harsh soaps and hand sanitizers. 

trents Grand Master
trents
Posted
(edited)
  On 6/19/2021 at 3:13 PM, justthemom said:

I have this on my fingers. It was diagnosed by my dermatologist as dishydrotic eczema, and I was given a strong steroid cream to treat it. I have no issues with gluten, I am on this board for the sake of my daughter, but I don’t know if it could be triggered by gluten in others. Mine is triggered by harsh soaps and hand sanitizers. 

Expand Quote  

If your daughter has celiac disease there is a 44% chance that her first degree relatives have or will develop it. Many celiacs have the "slilent" form with few or no obvious symptoms.

Edited by trents
justthemom Rookie
justthemom
Posted
  On 6/19/2021 at 3:23 PM, trents said:

If your daughter has celiac disease there is a 44% chance that her first degree relatives have or will develop it. Many celiacs have the "slilent" form with few or no obvious symptoms.

Expand Quote  

Yes, I suppose that is a possibility, but my daughter is currently testing negative for celiac on bloodwork and biopsy, so we haven’t investigated anyone else in the family. I was just browsing around looking for pics to compare to the rash she gets from gluten, spotted this all too familiar picture of tiny deep seated blisters on fingertips and thought I’d share my experience. 

GFinDC Veteran
GFinDC
Posted
  On 6/19/2021 at 4:43 PM, justthemom said:

Yes, I suppose that is a possibility, but my daughter is currently testing negative for celiac on bloodwork and biopsy, so we haven’t investigated anyone else in the family. I was just browsing around looking for pics to compare to the rash she gets from gluten, spotted this all too familiar picture of tiny deep seated blisters on fingertips and thought I’d share my experience. 

Expand Quote  

The DH photo bank is a good place to start looking.

 

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