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Dermatitis Herpetiformis ... My Journey

dernatitis herpetiformis

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#1 tinpins

 
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Posted 11 May 2013 - 11:18 AM

I found this forum after several days of researching on the internet and I have been reading through the threads of this forum. I’m so grateful that so many have shared their knowledge and their journey. It has helped me to feel less alone and more confident in what I must do. 

 

I'm sharing my journey in the hopes that it will help someone else who is searching for answers too.

 

Prior to the appearance of this rash 15 months ago, I have had an unbearably itchy back for at least 7 years and at times I could not even tolerate any pressure from clothing. Nothing would soothe or provide relief from the constant itch.

 

10 years ago I was diagnosed with Dupuytren’s contracture in my right hand. Within the last two years it has developed in both hands and seems to be developing in my feet.

 

5 years ago I was diagnosed with Osteoporosis ... I was shocked as I try to lead a healthy life ... exercise, eat well, etc.

 

15 months ago (March 2012), immediately following a nasty bout of flu, I developed 

  • An intensely itchy/burning rash that has been present constantly ever since. It began on upper chest, then went to my back and buttocks and now has slowly spread to limbs and neck. Raised liquid filled bumps appear that bleed profusely and repeatedly after being scratched and do not heal for months. Nothing soothes these lesions.
  • Frequent headaches on waking
  • Frequent lower abdominal stomach aches after eating 
  • An very occasional feeling of discomfort in my left side (?kidney)

Over the last 15 months I have eliminated using, or used only infrequently:

  • all known allergenic foods
  • scented soaps, shampoos, moisturizing lotions
  • showering only twice a week (chlorine?) and because it hurt!
  • contact with pets
  • dyeing hair
  • fragrances
  • laundry soap (rinse things x 3)
  • multi vitamins
  • alcohol

 

 

I have had multiple tests over many years and have been advised to avoid eating many foods, and I do. Anaphylaxis is a frightening experience and I've had two incidents some years ago.

 

Just a few days ago, on the morning of May 7th after a second sleepless, crazy irritable, itchy-all-over night within a week I realized what the culprit was. Both evenings I had eaten a double helping of fresh home made King Arthur bread! Poisoning myself with "goodness". How could I be so naive? 

 

With all the other things I am allergic to I had forgotten that in 1991, the allergist I saw he must have told me to eliminate wheat from my diet because it's one of the things he underlined on the sheet of things I should not eat, but he didn’t emphasize it or I would have remembered. I found the information in my file when I was gathering all my notes together for my appointment to see my allergist next week. 

 

So over the last couple of decades I have not been eliminating wheat from my diet and unfortunately for the last year or so we have been baking all our bread at home and consequently eating more than we normally would because of how good it is.

 

After finding this forum and reading many of the threads, I now know what I am dealing with.  My symptoms and visible lesions suggest Dermatitis Herpetiformis.

 

Upon realizing this a couple of days ago, I completely eliminated gluten from my diet.

 

All these years searching for an answer ... I now have hope that my quality of life will be restored and that maybe some of the damage already done to my body can be at least halted if not reversed. The photo in the top right of this page could be me!  http://www.lookfordi...tiformis&lang=1

 

I have an appointment with my allergist next week and I plan on going along with notes and photos. I don't want a biopsy or tests ... just a plan of action going forward. Nutritionist maybe? I have a feeling that I will get a lot of help here. Sorry this post is so long ... it's been a long journey! 

 

Best I could do for a photo is this link. It shows a small area of my body that is affected:

 

http://flic.kr/p/eiiS6R

 



 


Edited by tinpins, 12 May 2013 - 02:22 PM.

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#2 pricklypear1971

 
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Posted 11 May 2013 - 11:53 AM

Well, I certainly hope you've found your answer. If your rash is dh you have celiac disease....so that means a gluten free diet for life. I'd visit the newbie section here and start reading about how to get the gluten out of your life - including dreaded "cross contamination".

Also, if you are dealing with dh, you may try a period of low iodine to help push it into remission. I suggest the thyca.org diet, sans gluten. Google it.
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 tinpins

 
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Posted 11 May 2013 - 02:23 PM

Well, I certainly hope you've found your answer. If your rash is dh you have celiac disease....so that means a gluten free diet for life. I'd visit the newbie section here and start reading about how to get the gluten out of your life - including dreaded "cross contamination".

Also, if you are dealing with dh, you may try a period of low iodine to help push it into remission. I suggest the thyca.org diet, sans gluten. Google it.

Thank you .. I will follow your advice and check out thyca.org also.

 

I have much to learn but I also have hope finally.


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#4 squirmingitch

 
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Posted 11 May 2013 - 03:26 PM

Hi tinpins & welcome to the board.  :)

Hope is a good thing. But if it's dh then you may have a long row to hoe yet. But getting on the road to recovery is the first step & it does get better --- maybe not as fast as one wants but certainly it gets better.

If you have pets you need to make sure they are eating gluten free food --- grain free is the safest bet. Be sure to change them over gradually or they'll get sick from the sudden change.

If you don't want a dx or tests then your plan of action is quite simple --- strict gluten free --- it's no more complicated than that. As to a nutritionist..... you can find all the info. you need right here.

Learning the gluten free diet & getting it down pat carries a steep learning curve. The most innocuous foods can contain gluten so you must learn the rules & read every label EVERY time. 

Here are some links for you:

 

 

Interesting Reading on DH:
 
 
 
Descriptions of DH Types:
 
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
 
DH Photobank:
 
 
 
 
Newbie 101 for celiacs
 

  • 1

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#5 tinpins

 
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Posted 11 May 2013 - 03:44 PM

 

Hi tinpins & welcome to the board.  :)

Hope is a good thing. But if it's dh then you may have a long row to hoe yet. But getting on the road to recovery is the first step & it does get better --- maybe not as fast as one wants but certainly it gets better.

If you have pets you need to make sure they are eating gluten free food --- grain free is the safest bet. Be sure to change them over gradually or they'll get sick from the sudden change.

If you don't want a dx or tests then your plan of action is quite simple --- strict gluten free --- it's no more complicated than that. As to a nutritionist..... you can find all the info. you need right here.

Learning the gluten free diet & getting it down pat carries a steep learning curve. The most innocuous foods can contain gluten so you must learn the rules & read every label EVERY time. 

Here are some links for you:

 

 

Interesting Reading on DH:
 
 
 
Descriptions of DH Types:
 
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
 
DH Photobank:
 
 
 
 
Newbie 101 for celiacs
 

 

Thank you so much for all the links and your advice. I am so sure that this is what I have that going totally gluten free immediately was a no brainer. I have already learned so much from my reading on this site. I know that there is no miracle cure but I feel like I have come to a place of understanding ... and support. 

 

I've been trying to post a photo I took two days ago, and uploaded one to flickr as recommended, but I've not been successful in getting it to appear here. I'll try again here and if it doesn't work I'll ask for help : )

 

 ... I don't seem to have succeeded. Any hints anyone?


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#6 tinpins

 
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Posted 11 May 2013 - 04:48 PM

 

Hi tinpins & welcome to the board.  :)

Hope is a good thing. But if it's dh then you may have a long row to hoe yet. But getting on the road to recovery is the first step & it does get better --- maybe not as fast as one wants but certainly it gets better.

If you have pets you need to make sure they are eating gluten free food --- grain free is the safest bet. Be sure to change them over gradually or they'll get sick from the sudden change.

If you don't want a dx or tests then your plan of action is quite simple --- strict gluten free --- it's no more complicated than that. As to a nutritionist..... you can find all the info. you need right here.

Learning the gluten free diet & getting it down pat carries a steep learning curve. The most innocuous foods can contain gluten so you must learn the rules & read every label EVERY time. 

Here are some links for you:

 

 

Interesting Reading on DH:
 
 
 
Descriptions of DH Types:
 
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
 
DH Photobank:
 
 
 
 
Newbie 101 for celiacs
 

 

Think I might have figured out a way to share a photo with this link ... it shows part of my torso that is affected ... same on the other side and both arms. 

 

http://flic.kr/p/eiiS6R

 

Thank you again for all your helpful advice ... I'm finding it everywhere as I read through the posts  :)


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"If you're going through hell, keep going" - Winston Churchill

 

 


#7 sisterlynr

 
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Posted 11 May 2013 - 09:16 PM

Sure sounds and looks like you have found your answer, IMHO.  This is a great place to find information about Celiac.  I too was helped and stumbled onto this site by searching the net.  

 

I take Dapsone which has helped spare my sanity!  There is also a topical form of Dapsone. . . you may consider this in addition to your diet.  Wish you the best!

 

 


  • 1

Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#8 tinpins

 
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Posted 12 May 2013 - 04:01 AM

Sure sounds and looks like you have found your answer, IMHO.  This is a great place to find information about Celiac.  I too was helped and stumbled onto this site by searching the net.  

 

I take Dapsone which has helped spare my sanity!  There is also a topical form of Dapsone. . . you may consider this in addition to your diet.  Wish you the best!

 

 

Thank you Lyn ... you have had a rough journey and I appreciate you sharing your thoughts.

 

I have been reading about the topical Dapsone so it is of interest to me if I can tolerate it.

 

When one of the members (I think it was Squirmyitch) used the term "the suicidal itch" to describe this condition, I actually burst into tears of relief. Someone understands.  I feel optimistic that now I can eventually find some comfort and halt the damage that is being caused to my body. I know I have much to learn.

 

It's funny because last Saturday my PCP/GP called me at home (!)  I'd been in to see him earlier in the week and asked him to send me back to the allergist  ... in fact I simply said "help ... this is becoming unbearable". So when he called me he said if I didn't hear from the specialists offices with appointments soon to call him back because he had just read an article and it sounded like he knew what I had from the article (he wouldn't say) ... but he said it was most important that I see the dermatologist and not just the allergist.

 

And that night is when I had the second severe all night reaction (after eating lots of fresh home-made bread). The following morning is when I realized it was wheat and armed with that knowledge and with my GPs words from the day before I started doing my research on the internet .... and I found this forum and I found hope.


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"If you're going through hell, keep going" - Winston Churchill

 

 


#9 pricklypear1971

 
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Posted 12 May 2013 - 09:03 AM

Yes, we get it. Unfortunately :).

Dh is life altering. I changed my life to accommodate that rash. It effects your body, mind....disfigured you, and makes you cry.

Most doctors don't recognize it, and fewer can get an accurate biopsy from it. Often you've been treated with steroids for "mystery rash", so blood and skin tests can be falsely negative, IF a doctor was suspicious.

You're left with setting your jaw and plowing forward with gluten-free if you're lucky enough to figure it out on your own.

So, we get it. Feel free to vent and scream and ask questions. I sincerely hope this is your answer because chronic mystery skin diseases can be horrible to live with.

Please do NOT underestimate the power of a gluten-free and low iodine diet in the beginning, if this is dh. High iodine foods made my rash flare hideously, even while strictly gluten-free. Not everyone is as sensitive to iodine as I was - and quite frankly, that sensitivity was enough to "seal" my dx...

Good news, if you are iodine sensitive you may find it a drug-free way of controlling the rash. I was strictly low iodine two weeks, then started adding back slowly. I found I was more sensitive to certain high iodine foods - egg yolks, carrageenan, asparagus, potatoes. Everything else I could tolerate quite well. I think iodine is cumulative - so I ramped up intake over 3 months, and by then I was able to eat anything but gluten.
  • 2
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#10 squirmingitch

 
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Posted 12 May 2013 - 09:55 AM

I echo what Prickly said. And everyone's case is different. I hope you react like Prickly & the low iodine will do the trick for you quickly. Me, I'm 17 mos. & STILL iodine makes my dh go freaking insane. So only time will tell.

I DO have a good story to share with you guys today though. For the first time in 17 mos. I had potato salad! Ahhhhhhhhhhhhhhh, a small slice of heaven indeed! Since I couldn't have egg yolks b/c of the iodine then potato salad was out of the question. i tried 3 times making eggless mayo --- BIG FLOP! There is a product called Vegenaise (I used the original one) but it has to be shipped & kept refrigerated so you can't order it online & get it sent to you. None of my stores carried it; not even the health food store. FINALLY 1 local store began carrying it. HOORAY!!!!!!!!!! Maybe I've just been so long w/o mayo that I don't remember what good mayo tastes like but this stuff tastes like the very best Hellman's mayo. Truly! It  has some soy protein in it but it hasn't seemed to bother me. Maybe my gut has healed enough that I can tolerate a little soy now. And for the potato salad, I hard boiled an egg & removed & rinsed out  the yolk & just cut up the egg white. It was delicious!!!!! So this week I have had potato salad AND an egg white & sausage sandwich with mayo. Life just got a little bit more bearable. :D Small victories.


  • 1

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#11 pricklypear1971

 
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Posted 12 May 2013 - 10:00 AM

I echo what Prickly said. And everyone's case is different. I hope you react like Prickly & the low iodine will do the trick for you quickly. Me, I'm 17 mos. & STILL iodine makes my dh go freaking insane. So only time will tell.
I DO have a good story to share with you guys today though. For the first time in 17 mos. I had potato salad! Ahhhhhhhhhhhhhhh, a small slice of heaven indeed! Since I couldn't have egg yolks b/c of the iodine then potato salad was out of the question. i tried 3 times making eggless mayo --- BIG FLOP! There is a product called Vegenaise (I used the original one) but it has to be shipped & kept refrigerated so you can't order it online & get it sent to you. None of my stores carried it; not even the health food store. FINALLY 1 local store began carrying it. HOORAY!!!!!!!!!! Maybe I've just been so long w/o mayo that I don't remember what good mayo tastes like but this stuff tastes like the very best Hellman's mayo. Truly! It has some soy protein in it but it hasn't seemed to bother me. Maybe my gut has healed enough that I can tolerate a little soy now. And for the potato salad, I hard boiled an egg & removed & rinsed out the yolk & just cut up the egg white. It was delicious!!!!! So this week I have had potato salad AND an egg white & sausage sandwich with mayo. Life just got a little bit more bearable. :D Small victories.


But they are still victories! Yay!

I can't describe how thrilled I was to eat a whole egg...can't imagine how you'll feel.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#12 squirmingitch

 
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Posted 12 May 2013 - 11:09 AM

Yes, victories are victories & each one gives us something to grasp so we keep moving forward. Oh how right you are Prickly! I dream of a plate full of fried eggs sunny side up. I will get there too. 


  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#13 tinpins

 
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Posted 12 May 2013 - 12:53 PM

Squirmingitch, Pricklypear and Sisterlynr, ... thank you

 

I read your posts and am most grateful for all your helpful advice. As I put together my medical records to see my specialists in the next week and organize them into date order, the realization that I have been struggling along on this journey for 40 years shocks me. Many, many allergists and dermatologists perplexed over the years ... all the morning headaches, constant wicked stomach aches, constipation, and the "suicidal itch" ... I can now have hope that they can eventually be left behind as a very bad memory. I feel like I can get my quality of life back because I don't need to say these words to anyone here  ... the last year in particular has been most unpleasant. 

 

I'm educating myself on the gluten free diet and will definitely eliminate iodine for a period of time as well. The reason I initially thought I might need to see a nutritionist was because as well as many many food and airborne allergies, I also developed osteoporosis five years ago. I see from all the reading I'm doing that it often accompanies DH as well  :(

 

As well as staying off gluten, and iodine (soon as I figure out where it all is) I've started to use aloe vera juice, quercetin and L-glutamine. Does anyone have any comments about these supplements and their experience with them?

 

This forum feels like a wonderful gift to me ..... thank you!


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"If you're going through hell, keep going" - Winston Churchill

 

 


#14 JaneWhoLovesRain

 
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Posted 12 May 2013 - 01:54 PM

Hi tinpins - I just want to say that your rash looks very much like mine did along with the scratch marks (I have some of my pics posted in the photo bank thread).  It was the worst itching rash I have ever had in my life, like a combination of poison ivy, sunburn, chickenpox, hives - burning, painful (showers were terribly uncomfortable) and itchy, waking me in the night over and over.  The spots matched the classical description, elbows, hips, back of neck, knees, slowly spreading elsewhere, and in an almost perfect bilateral symmetrical pattern.  My DH test came out negative but I later saw a GI doctor who said he is 80-90% confident I have celiac.  He told me to never eat gluten again, not even a tad bit of it and definitely not the amount one needs before testing. 

 

There is hope for you, a smily face at the end of the tunnel.  There is lots of food I miss but knowing what it could do to me if I eat it makes it much easier. 

 

Jane


  • 0
Gluten free since 2010 when it was suggested that my vertigo/dizzy problems may be from gluten. Tested negative for DH in April of 2012. However I'm not convinced I don't have DH as pictures and description pretty much match what I have.
11/2012 tested positve for 1 of the 2 celiac genes

#15 tinpins

 
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Posted 12 May 2013 - 02:21 PM

Hi tinpins - I just want to say that your rash looks very much like mine did along with the scratch marks (I have some of my pics posted in the photo bank thread).  It was the worst itching rash I have ever had in my life, like a combination of poison ivy, sunburn, chickenpox, hives - burning, painful (showers were terribly uncomfortable) and itchy, waking me in the night over and over.  The spots matched the classical description, elbows, hips, back of neck, knees, slowly spreading elsewhere, and in an almost perfect bilateral symmetrical pattern.  My DH test came out negative but I later saw a GI doctor who said he is 80-90% confident I have celiac.  He told me to never eat gluten again, not even a tad bit of it and definitely not the amount one needs before testing. 

 

There is hope for you, a smily face at the end of the tunnel.  There is lots of food I miss but knowing what it could do to me if I eat it makes it much easier. 

 

Jane

 

 

Jane thank you ... I believe there will be a smiley face but I think it's a bit in the distance yet. This feels so wretched that there is no way I would want to poison myself with gluten just to possibly get a positive diagnosis. I've done enough damage to my body ... it's time for healing.

 

I'm off gluten and I'll get off the iodine too as soon as I've figured out where it all is : )  There's lots to learn. I'm only a few days on this new path and there is some improvement ... not a single headache or stomach ache! Now that's amazing!     

 

But the itch ... oh wow ... don't we know ... it's wretched and it seems like it is worse today with lots of new nasties appearing. Never mind ... I'm optimistic that change is on the way  :)

 

(I did look at your photos and saw the same wretched nasties!)


Edited by tinpins, 12 May 2013 - 02:32 PM.

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