Does this look like dermatitis herpetiformis? (Warning: picture of bumpy knees))

[EF-ATL]

Hi guys! I'd appreciate any advice. I'm not celiac-diagnosed, though I've been on a gluten-free, clean-eating diet for the past 3 years. I figured I had leaky gut and malabsorption, as I've never been able to gain weight; am 36 and weigh the same as I did high school. There are some other issues won't go into here. :) But celiac wasn't really a concern until a couple weeks ago, when I got these itchy bumps on my knees. They're a little bit on my elbows too, and a small patch on my back. Every once in a while they kind of feel like they are stinging or swelling, in addition to being itchy to the touch.They look perhaps like a mild case of DH.

My derm will do a biopsy, but it's not cheap. Do you all think this looks like a possible case of DH-- enough to pursue? Given the pandemic, I'd certainly like to know if I've got a health condition. But for the same reason, I'm not keen on doing a "gluten challenge" at this exact moment in time. Ugh. Advice welcome! Thanks in advance! 





 

[cyclinglady]

Why get a diagnosis now after being gluten free for three years?  I assume you felt better going gluten free and that your initial symptoms resolved?  
 

This could very well be DH.  A biopsy would need to confirm it.  If you are going to spend the money, know that you must be on a full gluten daily diet for 6 to 12 weeks (just like the blood tests).  The skin biopsy must be adjacent to the lesions, and not on them.  Why? Because the doctor has to capture the antibodies that precede lesions.  If you go gluten free in as little as two weeks, he may not find the antibodies.   So, make sure your dermatologist is celiac-savvy.  Make sure he is following protocol as recommended by leading celiac disease research centers.  Many do not! Ask for blood tests too, since you already went through the agony of consuming gluten for weeks and weeks.  
 

Why break out now, despite being gluten free?  Those with DH report that even 20 ppm might be too much for them.  Too much iodine can contribute to flare-ups.  They must avoid gong out to eat at restaurants and avoid processed foods.  Maybe you have too lax at being gluten free.   Look though the DH section for tips and to confirm that I am not making this stuff up.  
 

I hope this helps.  

Edited June 18, 2020 by cyclinglady

[EF-ATL]

2 minutes ago, cyclinglady said:

Why get a diagnosis now after being gluten free for three years?  I assume you felt better going gluten free and that your initial symptoms resolved?  
 

This could very well be DH.  A biopsy would need to confirm it.  If you are going to spend the money, know that you must be on a full gluten daily diet for 6 to 12 weeks (just like the blood tests).  The skin biopsy must be adjacent to the lesions, and not on them.  Why? Because the doctor has to capture the antibodies that precede lesions.  If you go gluten free in as little as two weeks, he may not find the antibodies.   So, make sure your dermatologist is celiac-savvy.  Make sure he is following protocol as recommended by leading celiac disease research centers.  Many do not! Ask for blood tests too, since you already went through the agony of consuming gluten for weeks and weeks.  
 

Why break out now, despite being gluten free?  Those with DH report that even 20 ppm might be too much for them.  Too much iodine can contribute to flare-ups.  They must avoid gong out to eat at restaurants and avoid processed foods.  Maybe you have too lax at being gluten free.   Look though the DH section for tips and to confirm that I am not making this stuff up.  
 

I hope this helps.  

Thank you! Yes, the gluten-free diet has definitely helped me, but I am not militant when it comes to cross-contamination/eating out, so it's quite possible I gluten myself regularly. I think if a derm (or this forum) were to tell me, yes, that very much looks like it could be DH, it would be enough to make me strict until COVID dies down and I can do the proper challenge. 

[cyclinglady]

1 minute ago, EF_ATL said:

Thank you! Yes, the gluten-free diet has definitely helped me, but I am not militant when it comes to cross-contamination/eating out, so it's quite possible I gluten myself regularly. I think if a derm (or this forum) were to tell me, yes, that very much looks like it could be DH, it would be enough to make me strict until COVID dies down and I can do the proper challenge. 

But you HAVE to do a gluten challenge in order for the skin biopsy to work if you have been gluten free (even if you were just gluten light).   Unless, you know that you have been consuming gluten daily, your skin biopsy result could be negative.
 

We can not diagnose you on the internet.  You are going to take the advice of some non-medical person to confirm a diagnosis?  Yikes!    Even a dermatologist can not diagnose your rash without a biopsy.  He could guess and offer treatment (e.g. use this cream).  So many rashes can look like DH.  Your rash sounds like it could be DH, especially since it is bilateral and for whatever reason you are on a gluten free diet.    But the only treatment for DH is a strict gluten free diet.   There is a drug called Dapsone, but it has some serious side effects.  It is not intended for long term use.  Are you looking to be able to keep cheating and take a drug?  
 

Consider the challenge.  It you can not make it it for six weeks and all your symptoms come back, then you will know.  No money out.  You have your diagnosis.  If you make it for six weeks, then at least you will have not wasted your money on testing.  
 

It is up to you to decide what is best for you based on your health (and we do not know all your history). 
 

I urge you to do more research.  

[EF-ATL]

6 minutes ago, cyclinglady said:

But you HAVE to do a gluten challenge in order for the skin biopsy to work if you have been gluten free (even if you were just gluten light).   Unless, you know that you have been consuming gluten daily, your skin biopsy result could be negative.
 

We can not diagnose you on the internet.  You are going to take the advice of some non-medical person to confirm a diagnosis?  Yikes!    Even a dermatologist can not diagnose your rash without a biopsy.  He could guess and offer treatment (e.g. use this cream).  So many rashes can look like DH.  Your rash sounds like it could be DH, especially since it is bilateral and for whatever reason you are on a gluten free diet.    But the only treatment for DH is a strict gluten free diet.   There is a drug called Dapsone, but it has some serious side effects.  It is not intended for long term use.  Are you looking to be able to keep cheating and take a drug?  
 

Consider the challenge.  It you can not make it it for six weeks and all your symptoms come back, then you will know.  No money out.  You have your diagnosis.  If you make it for six weeks, then at least you will have not wasted your money on testing.  
 

It is up to you to decide what is best for you based on your health (and we do not know all your history). 
 

I urge you to do more research.  

Oh I definitely wouldn't rely on the internet for a formal, forever diagnosis! I do intend to do the challenge, it's just that doing the challenge right NOW (w/r/t to COVID) makes me nervous. In case it is celiac, now seems like a bad time to throw my body into an inflammatory state! I am COVID-paranoid. 😕 So I just need to figure out my best course action to get me through this pandemic. I have no problem being strict and assuming I have celiac until this pandemic is in the rearview mirror and I can do the challenge.

[GFinDC]

Hi,

Sounds like you are willing to be more strict with the diet.  That's good, and necessary whether you have DH or just celiac.  If you do go strictly gluten-free now and your DH like symptoms go away, that should be enough to convince you to stay strictly gluten-free IMHO.  I suggest you don't do a gluten challenge for DH testing.  If you read though some of the threads in the DH section describing DH symptoms, you'll find that they are very unpleasant and don't go away quickly.  It could take 6 months or more to get rid of the DH rash inflamed and worsened by a gluten challenge.  It's not something to risk IMHO.  Sleepless nights tossing and turning for months is not fun sounding to me.  Once your DH gets bad it is not likely to get better or less sensitive.  People with DH have to be very strict as Karen said and can react to very small exposures for weeks to months.  Also, agreeing again with Karen, avoiding iodine can help reduce the severity and longevity of the rash for some people.  But our bodies don't do well without iodine so it is not a long term solution.

[EF-ATL]

32 minutes ago, GFinDC said:

Hi,

Sounds like you are willing to be more strict with the diet.  That's good, and necessary whether you have DH or just celiac.  If you do go strictly gluten-free now and your DH like symptoms go away, that should be enough to convince you to stay strictly gluten-free IMHO.  I suggest you don't do a gluten challenge for DH testing.  If you read though some of the threads in the DH section describing DH symptoms, you'll find that they are very unpleasant and don't go away quickly.  It could take 6 months or more to get rid of the DH rash inflamed and worsened by a gluten challenge.  It's not something to risk IMHO.  Sleepless nights tossing and turning for months is not fun sounding to me.  Once your DH gets bad it is not likely to get better or less sensitive.  People with DH have to be very strict as Karen said and can react to very small exposures for weeks to months.  Also, agreeing again with Karen, avoiding iodine can help reduce the severity and longevity of the rash for some people.  But our bodies don't do well without iodine so it is not a long term solution.

Thanks for that insight! I didn't realize about that long length of healing time. Food for thought (no pun intended!).

[cyclinglady]

Read posts fro members like @squirmingitch, @apprehensiveengineer and @ravenwoodglass.  These members have had horrible bouts with DH and have figured it out.  Take their advice.  
 

Me?  Not DH.  Just chronic autoimmune hives.  I respond so far to antihistamines.  But read this post and see what happens as DH worsens.  It is enough to make me shudder!  A rash from “H E double toothpicks!”  As I used to say as a kid.  
 

 

[Awol cast iron stomach]

Ironically my DH issues did not show up during my 2 week gluten challenge. I know I can not compete a 12 week gluten challenge. So I don't have it official in my records. I suspect since PUPPP rash in pregnancy can be found in D H  /celiacs. That I had for sure in 2004 although my gluten intolerance was not on the books until 2016.

My gi issues have been all my life and had Dr's known more about celiac and all its symptoms I should have been diagnosed more than 20 plus years ago.

To me that looks familiar to me. early on that's what my elbows looked like. Does your skin begin to itch then burn to the point of insanity before it erupts ? yeah it likes that burn itch insane cycle to say don't eat that. Then it could be gluten is your problem. 

Good luck