Cycle of dermatitis herpetiformis

[Itchyperson]

My doctors have no answers for me.  I am desperate for some relief from this insane itch.  My doctors have long suspected Celiac disease.  I have been tested via blood test more times than I can remember, starting at around 10 years old.  Every time the results were negative.  More recently I had an upper GI and they took a sample to biopsy.  It was also negative.  My doctors have suspected this because of my constant GI pain and diarrhea.  Even recurring miscarriages lead to a celiac test.  All negative. 
 

On to my itch, when I was 24 I started getting extremely itchy bumps around my anus.  They come in cycles that are closely associated with my menstrual cycle.  I get these blisters, sometimes 2 or 3.  Sometimes 15 or more.  Around the anus, inside the rectum, and most are up the line of my butt crack.  Starting at my hole and going up the line to my back.  They are insanely itchy.  It consumes me.  They stay for a few days, break open and crust over.  Once they have a scab they are no longer itchy.  With these outbreaks I usually get achy and sore, like swollen glands feeling between my legs.  After about a week the scabs are gone and the cycle starts again in a few weeks.  
 

At first I thought I had herpes.  I have one had one partner and never had reason to believe he was unfaithful.  He’s never had any symptoms but I just didn’t know what else this could be.  I went to my OBGYN and she said it does not sound like herpes because herpes has a lot of pain and a little itch.  I don’t really have pain, just unbelievably itchy.  Anyway, she did a blood test and told me it’s not hsv-2 and she did not know what it was.  I brought this up to my GI and the GI doctor had never heard of dermatitis herpetiformis.  I’ve stumped 2 doctors and am searching for an answer.  
 

I occasionally get these on the sides of my fingers.  Twice I’ve had this happen on my lower legs.  Does this cyclical nature follow the pattern of dermatitis herpetiformis?  All I am finding online is that it can last for years.  Nothing about these cycles. 

[Scott Adams]

The only way to know for sure is to get a biopsy for DH, and also a blood panel for celiac disease. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful:

 

[Jacki Espo]

1 hour ago, Itchyperson said:

My doctors have no answers for me.  I am desperate for some relief from this insane itch.  My doctors have long suspected Celiac disease.  I have been tested via blood test more times than I can remember, starting at around 10 years old.  Every time the results were negative.  More recently I had an upper GI and they took a sample to biopsy.  It was also negative.  My doctors have suspected this because of my constant GI pain and diarrhea.  Even recurring miscarriages lead to a celiac test.  All negative. 
 

On to my itch, when I was 24 I started getting extremely itchy bumps around my anus.  They come in cycles that are closely associated with my menstrual cycle.  I get these blisters, sometimes 2 or 3.  Sometimes 15 or more.  Around the anus, inside the rectum, and most are up the line of my butt crack.  Starting at my hole and going up the line to my back.  They are insanely itchy.  It consumes me.  They stay for a few days, break open and crust over.  Once they have a scab they are no longer itchy.  With these outbreaks I usually get achy and sore, like swollen glands feeling between my legs.  After about a week the scabs are gone and the cycle starts again in a few weeks.  
 

At first I thought I had herpes.  I have one had one partner and never had reason to believe he was unfaithful.  He’s never had any symptoms but I just didn’t know what else this could be.  I went to my OBGYN and she said it does not sound like herpes because herpes has a lot of pain and a little itch.  I don’t really have pain, just unbelievably itchy.  Anyway, she did a blood test and told me it’s not hsv-2 and she did not know what it was.  I brought this up to my GI and the GI doctor had never heard of dermatitis herpetiformis.  I’ve stumped 2 doctors and am searching for an answer.  
 

I occasionally get these on the sides of my fingers.  Twice I’ve had this happen on my lower legs.  Does this cyclical nature follow the pattern of dermatitis herpetiformis?  All I am finding online is that it can last for years.  Nothing about these cycles. 

For me it's my back, stomach, legs, and scalp.  It took about a year after I completely scrubbed my diet of anything that could be gluten or even contaminated with gluten (like a shared toaster or eating fried food cooked in a contaminated fryer) before it finally went away.  I recently glutened myself by mistake and it's back but not nearly as bad.  

Same here - no test can prove it but I know based on the timing of symptoms.  Hope you feel better sooner rather than later. 

[Itchyperson]

3 hours ago, Scott Adams said:

The only way to know for sure is to get a biopsy for dermatitis herpetiformis, and also a blood panel for celiac disease. If you have dermatitis herpetiformis you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful:

 

Which doctor would I go to and ask for a biopsy?  My primary care? Or GI?  Or Dermatology?  I think I need one but do not know which doctor to go too because everyone has been so dismissive. I had a full celiac panel done a few months ago and everything was normal.  Thank you for sharing the article. 

[Scott Adams]

A dermatologist would need to do the skin biopsy for DH. 

[Jacki Espo]

1 hour ago, Itchyperson said:

Which doctor would I go to and ask for a biopsy?  My primary care? Or GI?  Or Dermatology?  I think I need one but do not know which doctor to go too because everyone has been so dismissive. I had a full celiac panel done a few months ago and everything was normal.  Thank you for sharing the article. 

I should clarify -- I've had a skin biopsy by my dermatologist.  It came back negative.  I was not eating gluten at the time of the test.  I've also had my GI do some type of test (not sure what) -- it did not come back positive but it also did not rule it out per the dr.  Regardless of the tests, I know gluten is the cause based on timing of onset of symptoms. 

[Wheatwacked]

The biopsy for dermatitis herpetiformis has to be adjacent to the rash. 

     dermatitis herpetiformis patients with a normal intestinal biopsy and normal celiac serology (blood test) will still respond to a gluten-free diet.  dermatitis herpetiformis is commonly diagnosed as eczema. Symptoms normally resolve with a strict, gluten-free diet.

Quote

A skin sample is taken from the area immediately next to a lesion and a fluorescent dye is used to look for the presence of Immunoglobulin A (IgA) deposits that appear in a granular pattern. Skin biopsies of people with dermatitis herpetiformis are almost always positive for this granular IgA pattern. 

 

[tenaj]

On 2/7/2024 at 6:50 PM, Itchyperson said:

My doctors have no answers for me.  I am desperate for some relief from this insane itch.  My doctors have long suspected Celiac disease.  I have been tested via blood test more times than I can remember, starting at around 10 years old.  Every time the results were negative.  More recently I had an upper GI and they took a sample to biopsy.  It was also negative.  My doctors have suspected this because of my constant GI pain and diarrhea.  Even recurring miscarriages lead to a celiac test.  All negative. 
 

On to my itch, when I was 24 I started getting extremely itchy bumps around my anus.  They come in cycles that are closely associated with my menstrual cycle.  I get these blisters, sometimes 2 or 3.  Sometimes 15 or more.  Around the anus, inside the rectum, and most are up the line of my butt crack.  Starting at my hole and going up the line to my back.  They are insanely itchy.  It consumes me.  They stay for a few days, break open and crust over.  Once they have a scab they are no longer itchy.  With these outbreaks I usually get achy and sore, like swollen glands feeling between my legs.  After about a week the scabs are gone and the cycle starts again in a few weeks.  
 

At first I thought I had herpes.  I have one had one partner and never had reason to believe he was unfaithful.  He’s never had any symptoms but I just didn’t know what else this could be.  I went to my OBGYN and she said it does not sound like herpes because herpes has a lot of pain and a little itch.  I don’t really have pain, just unbelievably itchy.  Anyway, she did a blood test and told me it’s not hsv-2 and she did not know what it was.  I brought this up to my GI and the GI doctor had never heard of dermatitis herpetiformis.  I’ve stumped 2 doctors and am searching for an answer.  
 

I occasionally get these on the sides of my fingers.  Twice I’ve had this happen on my lower legs.  Does this cyclical nature follow the pattern of dermatitis herpetiformis?  All I am finding online is that it can last for years.  Nothing about these cycles. 

Hi

I think you may be allergic to the adhesive on your sanitary pads. I have dermatitis herpetiformis and I also get a terrible rash, exactly as you describe, if I use sanitary pads, (this has nothing to do with my dermatitis herpetiformis.) With you saying this rash happens around your periods I think its highly likely that your pads are causing your problems. I am also allergic to the adhesive on plasters and several other dressings.  I hope this helps you because I know what you're going through and it's awful!! 

[knitty kitty]

@Itchyperson,

I've had the same problem with outbreaks in that area.  Dermatitis Herpetiformis is pressure sensitive.  Any place where there's pressure on the skin can cause a dermatitis herpetiformis sore to occur. 

I've had dermatitis herpetiformis blister on my fingers where I hold my pen and my knitting needles.  I've developed dermatitis herpetiformis on the palms of my hands after pushing a shopping cart around.  Same for outbreaks in the crotch area where seams of pants come together, fabric wads up and elastic in underwear rubs (including under elastic bra bands).  

Avoiding foods high in Iodine helps, but the most help I found is to supplement with Niacin Vitamin B 3 (and a B Complex because the B's all work together).  I get Niacin in the form that flushes (nicotinic acid - not the same as nicotine in tobacco).  The flushing of Niacin helps clear the tTg 3 IgA deposits out of the skin.  (tTg 2 IgA is what blood tests for Celiac Disease measure).  Niacin really helps heal and improve skin health.

I'm hypersensitive to adhesives, bandages, etc.  Niacin helps make the skin integrity stronger.  

Hope this helps!

[Kerry123]

I have been diagnosed with celiac about 5 years ago and two years ago I had my first bout of dermatitis herpetiformis and urgent care put me on steroids which did not work for me. This lasted for six weeks. Small bumps and itchy beyond any itch I’ve ever had from neck to toes. Off and on moving through my body like hives.

this time a few weeks ago I saw my new doctor about three days into itching. Through pictures and explaining (no biopsy) she gave me the diagnosis and prescribed hydroxyzine (anti itch, anti anxiety, sedative)

It is a magic pill for this horrible rash. Also she told me to take Prilosec in the am with food.  
just wanted to share what has helped me. 
a doctor that truly listens and understands this auto immune disease fully. 
a few of my doctors children have celiac with a mild rash so she “gets it”

[trents]

6 minutes ago, Kerry123 said:

I have been diagnosed with celiac about 5 years ago and two years ago I had my first bout of dermatitis herpetiformis and urgent care put me on steroids which did not work for me. This lasted for six weeks. Small bumps and itchy beyond any itch I’ve ever had from neck to toes. Off and on moving through my body like hives.

this time a few weeks ago I saw my new doctor about three days into itching. Through pictures and explaining (no biopsy) she gave me the diagnosis and prescribed hydroxyzine (anti itch, anti anxiety, sedative)

It is a magic pill for this horrible rash. Also she told me to take Prilosec in the am with food.  
just wanted to share what has helped me. 
a doctor that truly listens and understands this auto immune disease fully. 
a few of my doctors children have celiac with a mild rash so she “gets it”

What is the Prilosec supposed to do for the dermatitis herpetiformis? Prilosec is a GERD med.

[Raquel2021]

On 2/7/2024 at 1:50 PM, Itchyperson said:

My doctors have no answers for me.  I am desperate for some relief from this insane itch.  My doctors have long suspected Celiac disease.  I have been tested via blood test more times than I can remember, starting at around 10 years old.  Every time the results were negative.  More recently I had an upper GI and they took a sample to biopsy.  It was also negative.  My doctors have suspected this because of my constant GI pain and diarrhea.  Even recurring miscarriages lead to a celiac test.  All negative. 
 

On to my itch, when I was 24 I started getting extremely itchy bumps around my anus.  They come in cycles that are closely associated with my menstrual cycle.  I get these blisters, sometimes 2 or 3.  Sometimes 15 or more.  Around the anus, inside the rectum, and most are up the line of my butt crack.  Starting at my hole and going up the line to my back.  They are insanely itchy.  It consumes me.  They stay for a few days, break open and crust over.  Once they have a scab they are no longer itchy.  With these outbreaks I usually get achy and sore, like swollen glands feeling between my legs.  After about a week the scabs are gone and the cycle starts again in a few weeks.  
 

At first I thought I had herpes.  I have one had one partner and never had reason to believe he was unfaithful.  He’s never had any symptoms but I just didn’t know what else this could be.  I went to my OBGYN and she said it does not sound like herpes because herpes has a lot of pain and a little itch.  I don’t really have pain, just unbelievably itchy.  Anyway, she did a blood test and told me it’s not hsv-2 and she did not know what it was.  I brought this up to my GI and the GI doctor had never heard of dermatitis herpetiformis.  I’ve stumped 2 doctors and am searching for an answer.  
 

I occasionally get these on the sides of my fingers.  Twice I’ve had this happen on my lower legs.  Does this cyclical nature follow the pattern of dermatitis herpetiformis?  All I am finding online is that it can last for years.  Nothing about these cycles. 

As mentioned by other eliminate dairy, eggs, and iodine rich foods. Seafood and don't forget about iodized salt. Just get yourself some sea salt instead and see if that helps. The rash can take a while to clear

[Scott Adams]

2 hours ago, Kerry123 said:

I have been diagnosed with celiac about 5 years ago and two years ago I had my first bout of dermatitis herpetiformis and urgent care put me on steroids which did not work for me. This lasted for six weeks. Small bumps and itchy beyond any itch I’ve ever had from neck to toes. Off and on moving through my body like hives.

this time a few weeks ago I saw my new doctor about three days into itching. Through pictures and explaining (no biopsy) she gave me the diagnosis and prescribed hydroxyzine (anti itch, anti anxiety, sedative)

It is a magic pill for this horrible rash. Also she told me to take Prilosec in the am with food.  
just wanted to share what has helped me. 
a doctor that truly listens and understands this auto immune disease fully. 
a few of my doctors children have celiac with a mild rash so she “gets it”

Prilosec and PPI's in general are some of the most overprescribed drugs ever, and it has become clear that prolonged use can have very negative side effects caused by decreased nutrient absorption--the exact thing that celiac disease causes when it destroys your villi. They certainly should not be prescribed for DH alone.

[CatherineWang]

The fact that your symptoms are closely associated with your menstrual cycle could also be significant. Hormonal fluctuations can sometimes exacerbate autoimmune conditions like celiac disease and dermatitis herpetiformis. Given your history of gastrointestinal symptoms, recurrent miscarriages, and negative celiac tests, it's possible that you may have a non-celiac gluten sensitivity or another underlying autoimmune condition that hasn't been properly diagnosed. I would strongly recommend seeking out a dermatologist or allergist who is familiar with autoimmune skin conditions and celiac disease. They may be able to perform a skin biopsy of the affected area to confirm a diagnosis of dermatitis herpetiformis. Additionally, they can work with your other healthcare providers to explore potential treatment options and management strategies to help alleviate your symptoms.

[knitty kitty]

There's a higher risk for Celiac people to develop chronic urticaria.  First generation antihistamines like hydroxyzine are helpful in reducing histamine levels.  

Does urticaria risk increase in patients with celiac disease? A large population-based cohort study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896876/

 

Histamine release is part of the autoimmune reaction in Celiac Disease.  We can also consume histamine in foods.  

Histamine Intolerance Originates in the Gut

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/

Some intestinal bacteria can also secrete histamine.  Reducing dietary histamine can lower histamine levels.  

The dietary treatment of histamine intolerance reduces the abundance of some histamine-secreting bacteria of the gut microbiota in histamine intolerant women. A pilot study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9633985/

Yes, our menstrual cycle can influence our histamine levels, causing higher levels at mid-cycle.  

Histamine metabolism during the menstrual cycle

https://pubmed.ncbi.nlm.nih.gov/973560/

Lowering dietary histamine, supplementing with Diamine Oxidase DAO, a digestive enzyme that breaks down histamine, and antihistamine medications help lower histamine levels.  

Histamine Intolerance—The More We Know the Less We Know. A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308327/

Yes, I've had urticaria and dermatitis herpetiformis both.

Hope this helps!

[Ginamd]

I have dealt with breakouts on rear end and it is herpes! You should ask them to try u on valacyclovir and see if it clears up! That’s where my breakouts were and now with celiacs, i get gluten rashes and blisters on rear also if i have any trace ammounts of gluten and rashes on body and face

[Scott Adams]

This is possible, however, in someone with celiac disease this is also a common area for those with DH.

[Itchyperson]

During an outbreak I had it swabbed for HSV1 and HSV2.  Both were negative.  During the next outbreak I’ll ask for a biopsy for dermatitis herpetiformis. 

[trents]

2 hours ago, Itchyperson said:

During an outbreak I had it swabbed for HSV1 and HSV2.  Both were negative.  During the next outbreak I’ll ask for a biopsy for dermatitis herpetiformis. 

Not every dermatologist knows how to biopsy for dermatitis herpetiformis correctly. Check with your derm doctor first to see if the have had much experience with biopsying dermatitis herpetiformis. For one thing, the biopsy needs to be taken from tissue adjacent to a bump, not on a bump.

[MopsyMoll]

On 2/14/2024 at 2:21 PM, knitty kitty said:

@Itchyperson,

I've had the same problem with outbreaks in that area.  Dermatitis Herpetiformis is pressure sensitive.  Any place where there's pressure on the skin can cause a dermatitis herpetiformis sore to occur. 

I've had dermatitis herpetiformis blister on my fingers where I hold my pen and my knitting needles.  I've developed dermatitis herpetiformis on the palms of my hands after pushing a shopping cart around.  Same for outbreaks in the crotch area where seams of pants come together, fabric wads up and elastic in underwear rubs (including under elastic bra bands).  

Avoiding foods high in Iodine helps, but the most help I found is to supplement with Niacin Vitamin B 3 (and a B Complex because the B's all work together).  I get Niacin in the form that flushes (nicotinic acid - not the same as nicotine in tobacco).  The flushing of Niacin helps clear the tTg 3 IgA deposits out of the skin.  (tTg 2 IgA is what blood tests for Celiac Disease measure).  Niacin really helps heal and improve skin health.

I'm hypersensitive to adhesives, bandages, etc.  Niacin helps make the skin integrity stronger.  

Hope this helps!

Would you mind sharing the brand of Niacin you use? I’m trying to do my research but I was just diagnosed and making sure it’s gluten free and the correct formulation has me about in tears. 

[Wheatwacked]

Nicotinic Acid.   I get my vitamins from pipingrock.com.  They are gluten free and inexpensive but high quality.

[MopsyMoll]

7 hours ago, Wheatwacked said:

Nicotinic Acid.   I get my vitamins from pipingrock.com.  They are gluten free and inexpensive but high quality.

Thank you so much! 

[knitty kitty]

On 10/21/2024 at 6:42 PM, MopsyMoll said:

Would you mind sharing the brand of Niacin you use? I’m trying to do my research but I was just diagnosed and making sure it’s gluten free and the correct formulation has me about in tears. 

I like the flushing form of Niacin, nicotinic acid.  I use Nature's Way brand. 

I always check for fillers, like rice flour and cellulose, and avoid brands that use those.  

I understand about studying the labels!  I've been through that situation frustration.  You'll learn quickly.  

Do take a B Complex along with the additional Niacin.  And additional Thiamine, too.  Thiamine and Niacin work in tandem, sort of like a see-saw, to make energy and enzymes.  Don't take more than 500 mg of Niacin a day.  Do take more than 300 mg of Thiamine (Benfotiamine) a day.

The B vitamins all need each other to work properly.  The B vitamins are water soluble, so excess is easily p'd out.  

Are you taking Vitamin D?  It helps regulate the immune system and lowers inflammation.  D2 is synthetic and not well utilized by the body.  Choose D3, the natural form instead.  

[pmarklesparkle]

After seeing 2 doctors for a rash on my elbows and forearms, that did NOT get better with steroids or creams, I was directed to a dermatologist.  She took a biopsy from one of the lesions, September 3, 2024.   A week later, the result was dermatitis herpetiformis, positive for celiac. She prescribed Clobetasol Propionate USP, 0.05% cream.  This is the only thing that helped with the rash. The dermatologist then took a second biopsy from an area that was near the rash that was clearing up.  That biopsy came back negative.

Meanwhile, the dermatologist referred me to a gastroenterologist PA.  The battery of bloodwork was mixed, some showing weak positive for celiac, but my IgA was considered normal.  The PA told me I may have mild Celiac and should just monitor my gluten intake.  I knew she was wrong.  There is NO SUCH THING as mild celiac. So, I saw another practice's gastro NP.  The bloodwork actually looked better, but she ordered an endoscopy biopsy. the only way to get a conclusive diagnosis for celiac.  (In order to get an accurate result for this biopsy, one must be consume gluten for a minimum of 14 days before the endoscopy.)  Finally, I had my celiac disease diagnosis.

As I continue to navigate a gluten free diet (so far unsuccessfully) now including shampoo, conditioner, toothpaste, lip balm, sunscreen, body lotion, soap, make up etc... my dermatitis herpetiformis pops up.  The Clobetasol Propionate USP, 0.05% cream helps keep things at bay. I hope this helps you!

[trents]

Welcome to the forum, @pmarklesparkle!

Thanks for sharing your diagnostic journey as it may be helpful to others who are getting mixed results during the diagnostic phase.

Kudos to the gastro NP who dug deeper and ordered the endoscopy/biopsy.

You may also wish to investigate a low iodine diet to get a handle on your continued outbreaks of dermatitis herpetiformis.