Rash biopsy?

[mondaydonna]

Hi - has anyone had their rash biopsied instead of doing a gluten challenge for the blood test?

For a rash biopsy, how present/visible does it need to be in order to get the biopsy? My rash isn't always super present, so it would be kind of hard to coordinate the appointment, I think?

Is it worth a try? Sometimes my rash only comes out after awhile of eating gluten (non organic gluten seems to make it even worse). 

I want to have a definitive answer about celiac to know how cautious I need to be about cross-contamination. 

Thanks!

[Emmy208]

18 hours ago, mondaydonna said:

Hi - has anyone had their rash biopsied instead of doing a gluten challenge for the blood test?

For a rash biopsy, how present/visible does it need to be in order to get the biopsy? My rash isn't always super present, so it would be kind of hard to coordinate the appointment, I think?

Is it worth a try? Sometimes my rash only comes out after awhile of eating gluten (non organic gluten seems to make it even worse). 

I want to have a definitive answer about celiac to know how cautious I need to be about cross-contamination. 

Thanks!

Unfortunately, I do not have an answer but I wanted to reply, one to let you know you’re not alone, and two, because I want to be notified when someone else answers this because I am wondering the same thing lol. I have a rash that looks like pictures of DH on the internet and matches up with online descriptions of DH symptoms (symmetrical, burning/stinging feeling precedes formation of blisters/bumps, and extremely itchy). I was negative on celiac blood tests so I assumed I didn’t have celiac. However, I tried going gluten-free just to see if anything changed, and my rash and my other symptoms (chronic fatigue, muscle pain, steatorrhea, etc) improved significantly on a GFD (and recurred with accidental gluten exposure via cross contamination). Later, I learned that many people with DH are negative on blood tests (University of Chicago estimates as much as 60%), so I am also planning to get a skin biopsy and an endoscopy/biopsy. 
 

The gluten challenge is extremely long for the blood test (6-8 weeks). Are you already gluten-free? If yes, I would not recommend getting the blood test done if your gluten-induced symptoms will be unbearable. I don’t know how long the DH skin biopsy gluten challenge is, but I know the endoscopy gluten challenge is 2 weeks which is a bit easier than the blood test. However, damage to the villi is often patchy with DH, so if you are going to get an endoscopy, make sure your doctor takes a total of 6 samples, 2 from the duodenal bulb and 4 from the duodenum. Honestly, what I would most recommend is getting a genetic test for the HLA variants associated with celiac disease (Labcorp is best since they not only report HLA DQ2.5 and HLA DQ8 but also half DQ2 which can predispose to celiac). 
 

Hoping you start getting some answers and feeling better! 

[mondaydonna]

48 minutes ago, Emmy208 said:

Unfortunately, I do not have an answer but I wanted to reply, one to let you know you’re not alone, and two, because I want to be notified when someone else answers this because I am wondering the same thing lol. I have a rash that looks like pictures of DH on the internet and matches up with online descriptions of DH symptoms (symmetrical, burning/stinging feeling precedes formation of blisters/bumps, and extremely itchy). I was negative on celiac blood tests so I assumed I didn’t have celiac. However, I tried going gluten-free just to see if anything changed, and my rash and my other symptoms (chronic fatigue, muscle pain, steatorrhea, etc) improved significantly on a GFD (and recurred with accidental gluten exposure via cross contamination). Later, I learned that many people with DH are negative on blood tests (University of Chicago estimates as much as 60%), so I am also planning to get a skin biopsy and an endoscopy/biopsy. 
 

The gluten challenge is extremely long for the blood test (6-8 weeks). Are you already gluten-free? If yes, I would not recommend getting the blood test done if your gluten-induced symptoms will be unbearable. I don’t know how long the DH skin biopsy gluten challenge is, but I know the endoscopy gluten challenge is 2 weeks which is a bit easier than the blood test. However, damage to the villi is often patchy with DH, so if you are going to get an endoscopy, make sure your doctor takes a total of 6 samples, 2 from the duodenal bulb and 4 from the duodenum. Honestly, what I would most recommend is getting a genetic test for the HLA variants associated with celiac disease (Labcorp is best since they not only report HLA DQ2.5 and HLA DQ8 but also half DQ2 which can predispose to celiac). 
 

Hoping you start getting some answers and feeling better! 

Thank you!! Do you happen to have a source for this info that I can share with my doctor in case they're stubborn? 

"damage to the villi is often patchy with DH, so if you are going to get an endoscopy, make sure your doctor takes a total of 6 samples, 2 from the duodenal bulb and 4 from the duodenum. Honestly, what I would most recommend is getting a genetic test for the HLA variants associated with celiac disease (Labcorp is best since they not only report HLA DQ2.5 and HLA DQ8 but also half DQ2 which can predispose to celiac)."

Yeah, I'm eating gluten now. My symptoms aren't currently unbearable. If my blood test is negative I'm going to speak with another doctor at my new patient appointment in December about trying another type of testing. 

Thanks!

 

[Scott Adams]

Everyone who suspects they have DH should definitely get a skin biopsy via a dermatologist, and hopefully they do it correctly (biopsy is taken directly next to blister, not on the blister itself).

Everyone should also get a celiac disease blood panel done as well, and to do this you would need to continue to eat gluten daily for 6-8 weeks before the blood test.

In some cases, individuals with dermatitis herpetiformis may have negative celiac disease blood serology, which means that blood tests commonly used to diagnose celiac disease, such as anti-tissue transglutaminase (tTG) antibodies and anti-endomysial antibodies (EMA), may not be elevated. However, the absence of positive blood serology does not necessarily rule out celiac disease.

The definitive diagnosis of dermatitis herpetiformis and celiac disease often involves a combination of clinical evaluation, skin biopsies, and small intestine biopsies. In dermatitis herpetiformis, a skin biopsy of an affected area is typically performed to look for specific changes characteristic of the condition. Small intestine biopsies can help confirm the presence of celiac disease.

The percentage of individuals with dermatitis herpetiformis who have negative celiac disease blood serology may vary, and it's challenging to provide an exact figure because the diagnosis can be complex. Some individuals may have seronegative celiac disease or may not have undergone comprehensive testing to confirm celiac disease. It's crucial for individuals with dermatitis herpetiformis or suspected celiac disease to work closely with healthcare professionals who specialize in these conditions for accurate diagnosis and management.

[Emmy208]

1 hour ago, mondaydonna said:

Thank you!! Do you happen to have a source for this info that I can share with my doctor in case they're stubborn? 

"damage to the villi is often patchy with DH, so if you are going to get an endoscopy, make sure your doctor takes a total of 6 samples, 2 from the duodenal bulb and 4 from the duodenum. Honestly, what I would most recommend is getting a genetic test for the HLA variants associated with celiac disease (Labcorp is best since they not only report HLA DQ2.5 and HLA DQ8 but also half DQ2 which can predispose to celiac)."

Yeah, I'm eating gluten now. My symptoms aren't currently unbearable. If my blood test is negative I'm going to speak with another doctor at my new patient appointment in December about trying another type of testing. 

Thanks!

 

Here is information about 4-6 samples being taken for the endoscopy: 

https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/#:~:text=Samples of the lining of,to obtain an accurate diagnosis.

Here is a link to the LabCorp celiac gene test which states that half DQ2 also predisposes to celiac:

https://www.labcorp.com/tests/167082/celiac-hla-dq-association#:~:text=Presence of DQ2%2C half DQ2,these individuals develop celiac disease.

 

 

[Moontoothy]

8 hours ago, Scott Adams said:

Everyone who suspects they have DH should definitely get a skin biopsy via a dermatologist, and hopefully they do it correctly (biopsy is taken directly next to blister, not on the blister itself).

Everyone should also get a celiac disease blood panel done as well, and to do this you would need to continue to eat gluten daily for 6-8 weeks before the blood test.

In some cases, individuals with dermatitis herpetiformis may have negative celiac disease blood serology, which means that blood tests commonly used to diagnose celiac disease, such as anti-tissue transglutaminase (tTG) antibodies and anti-endomysial antibodies (EMA), may not be elevated. However, the absence of positive blood serology does not necessarily rule out celiac disease.

The definitive diagnosis of dermatitis herpetiformis and celiac disease often involves a combination of clinical evaluation, skin biopsies, and small intestine biopsies. In dermatitis herpetiformis, a skin biopsy of an affected area is typically performed to look for specific changes characteristic of the condition. Small intestine biopsies can help confirm the presence of celiac disease.

The percentage of individuals with dermatitis herpetiformis who have negative celiac disease blood serology may vary, and it's challenging to provide an exact figure because the diagnosis can be complex. Some individuals may have seronegative celiac disease or may not have undergone comprehensive testing to confirm celiac disease. It's crucial for individuals with dermatitis herpetiformis or suspected celiac disease to work closely with healthcare professionals who specialize in these conditions for accurate diagnosis and management.

My DH was misdiagnosed maybe because they did the biopsy wrong ( or never examined the sample at all). Years later, celiac blood test was abnormal and inconclusive so I did the endoscopy and was diagnosed. 
 

[Scott Adams]

There are many reports on this forum of dermatologists not doing the skin biopsy correctly, possibly even more often than gastroenterologists make errors that can lead to false negative results. 

[Lmhteach33]

I am very confused about whether I have celiac or not. Thirty years ago I was diagnosed with DH by a biopsy of an active rash.  I took dapsone which quickly took care of the rash. I didn’t stay on it long and had some rare occasions of the rash afterwards. I would go light on gluten in those instances, but never gave it up completely.  
Recently I have had stomach issues. Blood test showed tissue transglutamate Igg and Iga as normal but high DGP Iga and igg and high immunoglobulin A. Endoscopy was done that showed small intestinal mucosa with increased intraepithelial infiltrate of T lymphocytes and partial villous atrophy suggestive of celiac disease.

Do you think I may have celiac disease as well as DH? Hoping not. 

After testing I was put on a gluten free diet for a time and another blood test will be taken. I’m really confused.

Thanks!

 

[trents]

Most likely.

[Scott Adams]

19 hours ago, Lmhteach33 said:

I am very confused about whether I have celiac or not. Thirty years ago I was diagnosed with DH by a biopsy of an active rash.  I took dapsone which quickly took care of the rash. I didn’t stay on it long and had some rare occasions of the rash afterwards. I would go light on gluten in those instances, but never gave it up completely.  
Recently I have had stomach issues. Blood test showed tissue transglutamate Igg and Iga as normal but high DGP Iga and igg and high immunoglobulin A. Endoscopy was done that showed small intestinal mucosa with increased intraepithelial infiltrate of T lymphocytes and partial villous atrophy suggestive of celiac disease.

Do you think I may have celiac disease as well as DH? Hoping not. 

After testing I was put on a gluten free diet for a time and another blood test will be taken. I’m really confused.

Thanks!

 

I believe that the general consensus is that everyone with DH has celiac disease. DH is the skin manifestation of celiac disease. Everyone with either DH and/or celiac disease should be on a gluten-free diet.

[trents]

Most with DH also have gut involvement but there is a small percentage who only have the skin rash.

[Lmhteach33]

Thank you! I did not have any gut problems that I know of until recently. I seldom have diarrhea. I was getting bloated and gassy. I wonder why my ttg igg and Iga are both negative then (while the other scores are positive). My doctor has ordered another blood test for 4 weeks from now so I will see. He left it up to me whether to have another endoscopy done. I wonder if that is necessary to confirm celiac. The doctor has not told me I have it definitively yet.  But like you, I’m leaning towards yes (unfortunately)😏

[trents]

2 minutes ago, Lmhteach33 said:

Thank you! I did not have any gut problems that I know of until recently. I seldom have diarrhea. I was getting bloated and gassy. I wonder why my ttg igg and Iga are both negative then (while the other scores are positive). My doctor has ordered another blood test for 4 weeks from now so I will see. He left it up to me whether to have another endoscopy done. I wonder if that is necessary to confirm celiac. The doctor has not told me I have it definitively yet.  But like you, I’m leaning towards yes (unfortunately)😏

The reason they run  a number of antibody tests is because not everybody's immune system responds exactly the same way to a given disease. This true for many diseases. The most common single test run to check for celiac disease is the tTG-IGA. It catches most people who have celiac disease but not all. That's why they sometimes run other antibody tests. One size doesn't fit all.

[Scott Adams]

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.