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Do I have dermatitis herpetiformis?

Christine-TD

By Christine-TD
in Dermatitis Herpetiformis

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Christine-TD Newbie
Christine-TD
Posted

Hi there!

I hope anyone can help me...

From a young age I have been diagnosed with atopic dermatitis. My mostly effected body parts are my hands, inner elbow(?) and the back of my knees. I've been using cortisone creams (weak and very strong ones) for as long as I can remember. I've never seen severe or any effect of using any of these.. My dermatitis do go away sometimes (usually goes away when I go on holidays to tropical countries). I would say I've had dermatitis for maybe 70-80% of my life. 

Two or three times I've had "flareups" on almost identical areas of my body. These flareups consist of dermatitis around my mouth (looks horrible and affects my self esteem a lot) and on my neck. I think the first time I had it was when I was 15 (it lasted for 1,5 years) then when I was 18 (lasted for 4-6 months) and I just got it again at age 21. 

I got extremely upset because I knew it would last for some time due to the past incidents. I searched for hours online, and tried thinking of correlations between the earlier flareups. I found an article about dermatitis herpetiformis which caught my eye. Because I was desperate to see improvement of the dermatitis I went gluten free the same day. At this time I'd had the rash for 3 weeks without ANY improvement, and it was especially bad in the mornings (maybe due to lack of lubrication during nighttime). The next morning I woke up and the dermatitis around my mouth was almost COMPLETELY gone. I was in shock!! I couldn't believe it was some sort of coincidence, so I continued eating gluten free and haven't seen the dermatitis around the mouth since then. Haven't been eating gluten for 2 weeks besides one time by mistake (I got signs of the mouthrash only an hour after eating). I also wanna add that I do get the typical liqiud-filled blisters that are characterized with dermatitis herpetiformis; in my moutharea and hands. 

Sadly I still have it on my hands, some on my neck and inner elbows, but I do feel it's less itching and irritated. 

I hope people can help me with my questions.

1) Could it be that I have both atopic dermatitis and dermatitis herpetiformis? Has anyone ever heard of that? Or is it possible that the areas that are still affected will get better by time?

2) I've read the only way to diagnose this disease is by skin biopsy; does this mean I have to be eating gluten in order to get a positive result? I really don't want to go around with the rash in my face when I know I can avoid it by eating gluten free.. 

3) I couldn't find much about this online, but is it common to have other symptoms such as feeling tired and exhausted, migraine, anxiousness and depression etc... when having dermatitis herpetiformis? 

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ravenwoodglass Mentor
ravenwoodglass
Posted
4 hours ago, Christine_TD said:

.

1) Could it be that I have both atopic dermatitis and dermatitis herpetiformis? Has anyone ever heard of that? Or is it possible that the areas that are still affected will get better by time?

2) I've read the only way to diagnose this disease is by skin biopsy; does this mean I have to be eating gluten in order to get a positive result? I really don't want to go around with the rash in my face when I know I can avoid it by eating gluten free.. 

3) I couldn't find much about this online, but is it common to have other symptoms such as feeling tired and exhausted, migraine, anxiousness and depression etc... when having dermatitis herpetiformis? 

1.It is possible. It does sound like DH but a rash around the mouth can sometimes be caused by vitamin deficiencies.

2.You do have to be eating gluten for celiac testing. It sounds like you haven't been gluten free very long though and if you still have active lesions on the inside of your elbows and hands they might be able to biopsy. The biopsy needs to be done next to an active lesion not on it and they need to be looking for celiac antibodies to find them in the lab.

3. These are all symptoms that can be seen with celiac.

Christine-TD Newbie
Christine-TD
Posted
  • Author

Thank you very much for taking your time to reply to me, ravenwoodglass!

ravenwoodglass Mentor
ravenwoodglass
Posted

You're welcome. Do be sure to read the Newbie 101 thread. There is a lot to do to stay safe and if you do have DH you may find you are very sensitive to even trace amounts. It is best to get tested if you can. You have only been gluten free for a couple of weeks at this point. If you stay gluten free and then decide to get tested farther down the road you will need up to a three month challenge and may find the symptoms are worse after the antibodies have completely calmed down and then flare up. You wouldn't have to eat a lot of gluten just a couple slices of bread a day.  IMHO better to go back on gluten now and get tested than wait.

apprehensiveengineer Community Regular
apprehensiveengineer
Posted
8 hours ago, Christine_TD said:

Two or three times I've had "flareups" on almost identical areas of my body. These flareups consist of dermatitis around my mouth (looks horrible and affects my self esteem a lot) and on my neck.

I got extremely upset because I knew it would last for some time due to the past incidents. 

 

I have not been diagnosed with DH via biopsy, but my rash is mainly centered around my neck/jawline/ears and upper back/spine. Despite what many doctors have told me (as an excuse for refusing to consider DH), these are common locations for the rash. You said you get it on your hands and knees, so be sure to mention that as well as those are considered more "classic" locations. 

The other hallmark of DH is that it lasts a long time and leaves a purple stain on the skin after it has healed. For me, it takes weeks-months for the skin to heal - it's a constant cycle of picking-oozing-crusting-scabbing. I am quite pale (redhead) and when I get either very cold or very hot, you can basically see a time history of purple blotches from all the lesions I've had in the last year or so. If this seem like a familiar comment, be sure to mention that as it's a fairly specific feature of DH.

I say this because I've been struggled for years to get a skin biopsy or any kind of real diagnosis on the rash and have mostly given up. If you have trouble finding a competent dermatologist like me, you might consider pursuing a traditional celiac diagnosis via blood test/endoscopy. Either way, you'll need to be strictly gluten-free. As an FYI, many with DH will test negative on the blood test as those with DH tend to make a slightly different antibody that is typically not tested for at most labs. Some doctors may be more or less aware of this. It might be worth it to be insistent that you get an intestinal biopsy done even if the blood test is negative.

Jmg Mentor
Jmg
Posted
5 hours ago, apprehensiveengineer said:

As an FYI, many with DH will test negative on the blood test as those with DH tend to make a slightly different antibody that is typically not tested for at most labs.

I knew that DH celiacs often tested negative on the blood test but didn't know why. Fascinating!

apprehensiveengineer Community Regular
apprehensiveengineer
Posted

I'm not sure that this is the original study I looked at, but it does describe the different antibodies found circulating in the blood that is specific to DH (anti-eTG, which is analogous to anti-tTG in regular celiac disease). At any rate, it seems that they can test for it, but many labs do not have the ability to do so or doctors do not know to ask for this lab test. So I suppose if one was very interested in a diagnosis, one could go to a research centre where they would likely have the ability to test for its presence!

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ravenwoodglass Mentor
ravenwoodglass
Posted
4 hours ago, apprehensiveengineer said:

I'm not sure that this is the original study I looked at, but it does describe the different antibodies found circulating in the blood that is specific to DH (anti-eTG, which is analogous to anti-tTG in regular celiac disease). At any rate, it seems that they can test for it, but many labs do not have the ability to do so or doctors do not know to ask for this lab test. So I suppose if one was very interested in a diagnosis, one could go to a research centre where they would likely have the ability to test for its presence!

Open Original Shared Link

Thank you so much for posting this. I am another person who suffered for many, many years with DH that was misdiagnosed repeatedly. I developed DH about age 7 and suffered until my late 40's being told it was everything from 'poison ivy in my blood to atopic dermatitis to 'pickers acne.  After a year or so gluten free I had clear skin for the first time in my memory.  Folks still struggling for a diagnosis may want to print this out to take to a derm with them.  Doctors may not listen to us but might listen to the NIH.

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