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Dermatitis Herpetiformis ... My Journey

dernatitis herpetiformis

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#121 tinpins

 
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Posted 06 June 2013 - 06:38 AM

This is such a wretched condition that searching for solutions becomes priority number one. I feel so unwell today with nausea as well as the gut symptoms, that crawling back into bed is imminent. This condition has me feeling that I'm not as resilient as I thought I was. I too have been letting so much go ... and this is NOT me ... and the psychological impact of starting to feel better and get some energy back, and then to relapse, is a toughie. Well, I find it to be so. I have so much I want to get on and do but today I have to give in to it.

 

It doesn't help that I'm putting together my medical history/notes to visit yet another dermatologist tomorrow and as I look at the paperwork all the dots are connected for me now ... in retrospect ... decades of "we don't know what it is".  I'm only going to the appointment because it is the one my PCP/GP made for me at the beginning of May and his referrals are always excellent. She can answer all the questions for me that the dermatologist who did the biopsy on May 16th didn't seem to have time to answer. 

 

The support and encouragement here is invaluable. Thank you.


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

 

 


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#122 squirmingitch

 
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Posted 06 June 2013 - 08:36 AM

I'm so sorry tinpins. I know exactly what you're going through. There are times you just give in & have to focus all your energy towards just getting through the day. This is likely not the last time it will happen either --- unfortunately. 

 

I CAN tell you though that it may take time but it DOES get better!!!!!! It really & truly does!

 

Remember, we've been sick a long time. It will take time to heal.


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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.

 


#123 JynGann

 
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Posted 07 June 2013 - 05:44 AM

I hope you are feeling better today tinpins.

My rash continues to improve. My skin still looks a mess but it does feel better. I slept the whole night without waking up itching for the first time in almost a year!

I have continued with my morning smoothies and I have to tell  you I am eating better than I ever have. I also discovered coconut oil and will now be adding a tablespoon of it in my smoothie as well as cooking with it. It is a bit pricey but it is suppose to help with skin issues as well as lower cholesterol so I'll give it a go.

One other thing, a big thanks to everyone on here, before I found this site I felt so alone. I'm not trying to be blubbery but I know I have been so depressed and I quit talking to my loved ones about how I was feeling because not only did they not understand they would joke about how I was always sick. I know they didn't mean harm but it cut pretty deep. I'm only 40 years old and I felt like I was near the end of my life and sometimes I wished I was. So not only is my body feeling better but my mind is too.

 

Jyn


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#124 tinpins

 
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Posted 07 June 2013 - 10:10 AM

Thanks "squirmy" for your encouragement ... this community has been a life-line for me in finding my way out of the dark miserable place I was in.

 

... and "JynGann" when I first came to this site I burst into tears when I realized that I was not alone. Someone understood. Not that my husband isn't supportive and kind, but like you I quit sharing my misery (headaches, gut aches, bleeding nose, suicide rash, etc ... even had a few instances of when I was unstable on my feet and fell and broke a rib a couple of months ago ... now I realize it was related to this condition!). I felt like a hypochondriac! I kept it mostly to myself like you and felt that my life was going to be a short one because I felt so awful. But we've been given a gift ... we know what was making us sick and we can do something about it. So glad for you.

 

Of all the medical professionals I've seen lately, (besides my GP/PCP) the most empathic and supportive was my dietitian, but even she gave me advice which put me into relapse this week. She said to increase the yogourt. BIG mistake. I'm still feeling unwell and just bought a hot water bottle and some ginger and I've made ginger tea with it to calm the nausea. And my hubby gets to eat the yogourt. But she did recommend a book which I'm reading and I recommend ... "How Doctors Think" by Jerome Groopman

 

I bought coconut oil but I'm holding off with that right now and I'm back to plain boiled chicken, carrots and green beans ... and bananas. The food diary is great for tracking what triggers relapses and I note them on the opposite page of my food intake.

 

We have reason to hope : ) 


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

 

 


#125 squirmingitch

 
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Posted 07 June 2013 - 10:31 AM

Just a note here about the coconut oil. I'm not sure...... I read on some sites that coconut is high in iodine thus it follows that coconut flour as well as coconut milk & coconut oil would be high iodine also. Now I'm not sure just how much iodine or just how high & it wasn't a site like thyca.org sooooooo...... For me, I choose not to go for it until my rash gives me some relief for a few solid months then I might get brave & try it. It's up to you to decide what you want to try. I'm still too miserable to risk flaming this stuff up more than it already is.

 

And I too felt the same way when I came to this site & had also just shut up about it & bore it all myself & thought I was going to have a short life. 


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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.

 


#126 tinpins

 
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Posted 09 June 2013 - 05:04 AM

Starting to feel better :) I was even able to go out on a really fun day trip yesterday and enjoy it. It was an annual field day trip for garlic growers (we grow it for personal consumption only : ) and I simply took along my own lunch ... a thermos with my chicken and vegie soup and when I got tired I just went and stretched out in the car and snoozed.

 

Here's what helped:

stopped the yogourt (so all dairy is OUT),

drink plenty of WEAK black tea with a couple of slices of ginger root (for the nausea),

and began to take Digest Gold digestive enzymes.

 

Before I began the descent into the black hole of DH misery about 1 1/2 years ago, I used to say I wanted to dance on my 100th birthday ... I gave up saying that over the last year or so ...  I did ... I thought my life was fast coming to a close.

 

But I'm starting to have hope that I'll feel that way again ... and soon   :)


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

 

 


#127 squirmingitch

 
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Posted 09 June 2013 - 09:56 AM

:)  :)  :)  :)  :)


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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.

 


#128 mamat78

 
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Posted 10 June 2013 - 05:47 PM

I hope you are feeling better today tinpins.

My rash continues to improve. My skin still looks a mess but it does feel better. I slept the whole night without waking up itching for the first time in almost a year!

I have continued with my morning smoothies and I have to tell  you I am eating better than I ever have. I also discovered coconut oil and will now be adding a tablespoon of it in my smoothie as well as cooking with it. It is a bit pricey but it is suppose to help with skin issues as well as lower cholesterol so I'll give it a go.

One other thing, a big thanks to everyone on here, before I found this site I felt so alone. I'm not trying to be blubbery but I know I have been so depressed and I quit talking to my loved ones about how I was feeling because not only did they not understand they would joke about how I was always sick. I know they didn't mean harm but it cut pretty deep. I'm only 40 years old and I felt like I was near the end of my life and sometimes I wished I was. So not only is my body feeling better but my mind is too.

 

Jyn

Jyn it is just nice to know there are other people who "get it" as simple as that sounds! 


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#129 mamat78

 
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Posted 10 June 2013 - 06:22 PM

Starting to feel better :) I was even able to go out on a really fun day trip yesterday and enjoy it. It was an annual field day trip for garlic growers (we grow it for personal consumption only : ) and I simply took along my own lunch ... a thermos with my chicken and vegie soup and when I got tired I just went and stretched out in the car and snoozed.

 

Here's what helped:

stopped the yogourt (so all dairy is OUT),

drink plenty of WEAK black tea with a couple of slices of ginger root (for the nausea),

and began to take Digest Gold digestive enzymes.

 

Before I began the descent into the black hole of DH misery about 1 1/2 years ago, I used to say I wanted to dance on my 100th birthday ... I gave up saying that over the last year or so ...  I did ... I thought my life was fast coming to a close.

 

But I'm starting to have hope that I'll feel that way again ... and soon   :)

so sorry you are feeling so yucky with eating the wrong foods. I havent had any digestive problems since going off but I didnt really suffer consistently before either. My stomach issues would come and go. I would get shooting pains up the middle of my stomach for about 3 months and then it would stop, then I would get horrible indigestion for a while. For me, its been primarily the skin...and wow, am I feeling good now! Gluten free for 15 days and my nickel rash that I have had consistently for 6 years is fully gone and not even threatening to come back...feels so good to wear pants with a belt agian. I said last week that my legs are cleared up but they now have fully healed and I am just working on learning how to be fully gluten free. So far, so good :) 

 

I also had a CT scan for pulsatile tinnitis today. Hoping to find answers to that one! 


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#130 tinpins

 
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Posted 11 June 2013 - 03:17 AM

so sorry you are feeling so yucky with eating the wrong foods. I havent had any digestive problems since going off but I didnt really suffer consistently before either. My stomach issues would come and go. I would get shooting pains up the middle of my stomach for about 3 months and then it would stop, then I would get horrible indigestion for a while. For me, its been primarily the skin...and wow, am I feeling good now! Gluten free for 15 days and my nickel rash that I have had consistently for 6 years is fully gone and not even threatening to come back...feels so good to wear pants with a belt agian. I said last week that my legs are cleared up but they now have fully healed and I am just working on learning how to be fully gluten free. So far, so good :)

 

I also had a CT scan for pulsatile tinnitis today. Hoping to find answers to that one! 

 

Please let us know what you find out from your CT scan ... that's a very nasty symptom to have to deal with. In retrospect mine was totally related to the DH and the consumption of gluten. Towards the end there, before I got a diagnosis and knew what was going on, I depressingly believed I was from a family line that was short lived and that it had something to do with my genetic makeup. Didn't think I had a lot of years left and that was an unbearable thought. The traumatic psychological journey this disease takes us on is significant and that's why this community is so valuable. We get support and understanding. We share our stories and connect the dots. We get help moving forward and healing. And for me personally, finding out it was genetic BUT that I could do something about it ... there are no words to describe that feeling. Only a fellow sufferer truly gets that. There are no glazed eyes here or rolled eyes when the word gluten is used ... just understanding. We are the lucky ones!


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

 

 


#131 mamat78

 
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Posted 11 June 2013 - 07:55 PM

CT scan...done yesterday. They said it would take a couple of days to get back to my doc. GOt a call today wanting me to go in to go over the results. Now I am scared. They dont ever seem to call unless there is something to report but maybe because its a CT they would? ANyone have any thoughts on this one? Should I be worried?? 


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#132 tinpins

 
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Posted 12 June 2013 - 02:16 AM

CT scan...done yesterday. They said it would take a couple of days to get back to my doc. GOt a call today wanting me to go in to go over the results. Now I am scared. They dont ever seem to call unless there is something to report but maybe because its a CT they would? ANyone have any thoughts on this one? Should I be worried?? 

 

This may be their typical routine with CTs, and if it is that is wonderful. You get your report and you can get on with your life.  I have worried waiting for tests ... it's not a nice place to be. When's your appointment?


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

 

 


#133 mamat78

 
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Posted 12 June 2013 - 05:38 AM

This may be their typical routine with CTs, and if it is that is wonderful. You get your report and you can get on with your life.  I have worried waiting for tests ... it's not a nice place to be. When's your appointment?

I actually only got the message last night. I will make the appointment today and who knows how long it will take to get in. 

 

I have to ask, does anyone get rough,  bumpy skin in spots? I have had this on my arms off and on for a very long time. It seemed to have cleared up but lately (the last week or so) it is back. ALso, my head has been so, so itchy in the last week. I don't know if there is something I am eating that is contributing or what but it certainly is not better than before, like the rest of my rashy body! 


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#134 tinpins

 
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Posted 12 June 2013 - 06:34 AM

I actually only got the message last night. I will make the appointment today and who knows how long it will take to get in. 

 

I have to ask, does anyone get rough,  bumpy skin in spots? I have had this on my arms off and on for a very long time. It seemed to have cleared up but lately (the last week or so) it is back. ALso, my head has been so, so itchy in the last week. I don't know if there is something I am eating that is contributing or what but it certainly is not better than before, like the rest of my rashy body! 

 

Yes and Yes ... My head was so itchy for a period of 10 days and that started before the DH became the all over body issue 15 months ago. It was so bothersome that I would regularly get my husband to look and see it there was anything living there  :huh:

 

And I have intermittently had a rash that is "sandpaper like" best way I can describe it ... not itchy like the DH lesions but still weird and bothersome because it doesn't respond to treatment (safe moisturizers did nothing to help it). Nor is it irritated or red. Interestingly, as my DH lesions have lessened in appearance and itchiness, those areas of "sandpaper" have started to reappear again on my arms in particular.   :huh:  :(

 

 

Here's an excerpt from my notes for my PCP/GPs appointment in 2009! 

Along with these symptoms I had the major gut issues, the fatigue, etc.

 

About 3 weeks after initial diarrhea, intense itching of scalp

which lasted for about 10 days. Not sure if related but no other cause established.

Sandpaper like rash (not red) appeared on forehead.

 

When I look back on my notes of all the stuff that has been part of this journey, a journey that I now thankfully discover I am not travelling alone, I find myself wondering how we kept our sanity. It's like hacking your way through a jungle with a pocket knife trying to find answers.

 

I'm five weeks gluten free so far and have had some major gut issues ... but today is a better day and now I have a hatchet to make my way through the jungle of confusion ... and best of all there are those on here who have gone before us along this path and are willing to help  :)

 

Hopefully you'll get an appointment really soon too!


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

 

 


#135 mamat78

 
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Posted 12 June 2013 - 05:43 PM

Yes and Yes ... My head was so itchy for a period of 10 days and that started before the DH became the all over body issue 15 months ago. It was so bothersome that I would regularly get my husband to look and see it there was anything living there  :huh:

 

And I have intermittently had a rash that is "sandpaper like" best way I can describe it ... not itchy like the DH lesions but still weird and bothersome because it doesn't respond to treatment (safe moisturizers did nothing to help it). Nor is it irritated or red. Interestingly, as my DH lesions have lessened in appearance and itchiness, those areas of "sandpaper" have started to reappear again on my arms in particular.   :huh:  :(

 

 

Here's an excerpt from my notes for my PCP/GPs appointment in 2009! 

Along with these symptoms I had the major gut issues, the fatigue, etc.

 

About 3 weeks after initial diarrhea, intense itching of scalp

which lasted for about 10 days. Not sure if related but no other cause established.

Sandpaper like rash (not red) appeared on forehead.

 

When I look back on my notes of all the stuff that has been part of this journey, a journey that I now thankfully discover I am not travelling alone, I find myself wondering how we kept our sanity. It's like hacking your way through a jungle with a pocket knife trying to find answers.

 

I'm five weeks gluten free so far and have had some major gut issues ... but today is a better day and now I have a hatchet to make my way through the jungle of confusion ... and best of all there are those on here who have gone before us along this path and are willing to help  :)

 

Hopefully you'll get an appointment really soon too!

ok so I also have the forehead bumps! I have never had an acne problem or a blemished face but for the past couple of months, I have had a really bumpy forehead. Not itchy or painful but noticeable to touch. My daughter even asked me why my forehead was so bumpy....oh the joys of sorting all of this out! 

 

Glad to hear you are feeling ok today. I just made a gluten free yummy pizza and at times like this, I think I can handle gluten free easiy. Its when I am stuck having to eat out that I curse the gluten free life! 


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