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Dermatitis Herpetiformis ... My Journey

dernatitis herpetiformis

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#46 tinpins

 
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Posted 19 May 2013 - 12:52 PM

Within days of removing gluten from my diet the rash became less itchy. 12 days into my "no gluten for life" journey I no longer need to use extreme measures like ice packs to give me relief. The itch is lessening and the dermatologist could not find any new lesions to biopsy   :)  Plus other symptoms were alleviated almost immediately (headaches). My intestines on the other hand are a different story and are giving me lots of grief. The healing journey is my priority now. I developed osteoporosis because I didn't know I had celiac disease. I want my quality of life back and eventually I will get it. I would have given up gluten decades ago if I knew then what I know now.

 

All my tests for 40 years came back negative! If I was you I would give up gluten. Period. This is a one way journey. There's no replay button  :)


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

 

 


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#47 mamat78

 
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Posted 19 May 2013 - 01:14 PM

I don't know why I keep holding on to the dx of dh but I have been, even though I know what I need to do to get relief. it is not the dx, it is removing gluten from my diet! I have been reading lots about other things going on and one of them (as crazy as it is), is pulsating tinitus. When reading about it, a huge % of people are lacking B12, a common issue in celiac. All of the dots are connecting. I just need to make the final move and face it like you have :)

I will get there. 


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#48 pricklypear1971

 
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Posted 19 May 2013 - 04:55 PM

Within days of removing gluten from my diet the rash became less itchy. 12 days into my "no gluten for life" journey I no longer need to use extreme measures like ice packs to give me relief. The itch is lessening and the dermatologist could not find any new lesions to biopsy :) Plus other symptoms were alleviated almost immediately (headaches). My intestines on the other hand are a different story and are giving me lots of grief. The healing journey is my priority now. I developed osteoporosis because I didn't know I had celiac disease. I want my quality of life back and eventually I will get it. I would have given up gluten decades ago if I knew then what I know now.

All my tests for 40 years came back negative! If I was you I would give up gluten. Period. This is a one way journey. There's no replay button :)

That's probably "leaky gut". Or, the part of Celiac that is leaky gut. I found I went through stages where certain things bothered me, then they didn't. I ate junior mints like they were water....then one day, they made me violently ill. I only developed two intolerances during healing, that I can figure out: processed mint flavor and pelligrino sodas. Weird, but true.

I found healing went in stages. In the beginning you make huge strides, but develop weird quirks. Usually the quirks work out after a while. Lots of people have a temporary issue with milk...some soy, some corn.

If you are dealing with "leaky gut" you may need to adopt a food regimen that is developed to healing it. Google leaky gut, or search on this site for info.
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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!

#49 pricklypear1971

 
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Posted 19 May 2013 - 04:57 PM

I don't know why I keep holding on to the dx of dh but I have been, even though I know what I need to do to get relief. it is not the dx, it is removing gluten from my diet! I have been reading lots about other things going on and one of them (as crazy as it is), is pulsating tinitus. When reading about it, a huge % of people are lacking B12, a common issue in celiac. All of the dots are connecting. I just need to make the final move and face it like you have :)
I will get there.


You do realize that topical steroid use (any steroid use) can give false negatives on Celiac and other autoimmune testing?
  • 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!

#50 tinpins

 
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Posted 19 May 2013 - 05:16 PM

That's probably "leaky gut". Or, the part of Celiac that is leaky gut. I found I went through stages where certain things bothered me, then they didn't. I ate junior mints like they were water....then one day, they made me violently ill. I only developed two intolerances during healing, that I can figure out: processed mint flavor and pelligrino sodas. Weird, but true.

I found healing went in stages. In the beginning you make huge strides, but develop weird quirks. Usually the quirks work out after a while. Lots of people have a temporary issue with milk...some soy, some corn.

If you are dealing with "leaky gut" you may need to adopt a food regimen that is developed to healing it. Google leaky gut, or search on this site for info.

 

This really helps .. thank you again. Soy and corn are out for me and I'm only using fermented milk products in small doses. This is why I'm being so cautious about a probiotic ... I know I need it but I don't want to worsen the journey so I'm being careful. Well, I believe you did say earlier that DH changes your life and wow does it ever. I'm just ever so thankful I know what is wrong and can work on righting it. My dear son bought me "Gluten is my bitch" for my birthday tomorrow and I will enjoy reading it for the insights that I will glean. I don't feel angry though. No anger. Just gratitude that there is a solution and kind folks like you are sharing their experiences and helping me along the way to healing. I'm off to do my homework assignment now ... "leaky gut" 101.  :)


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#51 mamat78

 
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Posted 19 May 2013 - 09:11 PM

You do realize that topical steroid use (any steroid use) can give false negatives on Celiac and other autoimmune testing?

Yes, I do know that cortisone will give a false negative but my derm wouldnt do a biopsy on the current area becuase I havent had a new blister that he felt would get  agood result (I have had this breakout for 6 months now) and wanted to wait for a new breakout before testing...I am not willing to wait for it. I am seeing my gp on thursday, getting a new panel done (not sure why but derm wanted it done again) and then will likely go off of gluten from there. I can wait for another breakout just to then have to wait another 2 weeks before even getting in for a biopsy...


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#52 tinpins

 
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Posted 21 May 2013 - 04:18 PM

A positive report:  Two weeks into my life without gluten and there is a definite improvement ... less itchy, bleeding much less and no significant new eruptions. This is a huge improvement after all this time. Still major gut issues but that will hopefully resolve itself too given time and all the help I can give it. I'm going to buy myself a medical alert bracelet (should have done it ages ago for the allergies) as a tangible reminder of how lucky I am to have found out what was stealing my quality of life away and potentially leading me to an early demise. And when the physical symptoms let up my bracelet will be my gentle little reminder to never intentionally slip up :)  


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#53 squirmingitch

 
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Posted 21 May 2013 - 04:21 PM

Great news! And I got a medical alert bracelet too. I got one that has the usb thingy so it can be inserted into any computer & read for your allergies/conditions but it can only be changed by you. It doesn't matter if it gets wet ~~~ it still works.


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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.

 


#54 tinpins

 
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Posted 21 May 2013 - 04:48 PM

Great news! And I got a medical alert bracelet too. I got one that has the usb thingy so it can be inserted into any computer & read for your allergies/conditions but it can only be changed by you. It doesn't matter if it gets wet ~~~ it still works.

 

I don't like wearing stuff on my wrist  ... but I dislike DH more. Partly it will be my "crutch" too when I feel like I might be inconveniencing someone by being too particular. My own visual reminder of what's most important  :)


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#55 sisterlynr

 
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Posted 24 May 2013 - 12:44 AM

Just hang in there!  I know the relief of knowing what this and what will heal the condition.  I had an appointment with my PCP Thursday.  I am a bit down over the fact that I am taking Dapsone and still have this rash and eating gluten-free & limited iodine.  I just recently realized some foods had iodine and think that is why I'm broken out.

 

Good report that my LDL is down by 50 points, total weight loss of 43 lbs, heart rate was 72 and BP 120/63.  Sugar is still running high; she encouraged me that it will take more time.

 

I read that when taking Dapsone, you should not have new blisters.  I do have new lesions, especially on the back of my scalp.  My doctor was surprised how badly my lower back and buttocks/hips are broken out.  My belly has some rash but is in the healing stage.

She told me NOT to get in the pool with these open lesions.  That greatly disappoints me.  She told me she would rather I go to the beach as the water is moving and wouldn't have bacteria like a pool.  I do not like the salt water and I see all the gook floating around.  Surprised me, for sure. I have a membership to the YMCA and personally I think the pool water would be cleaner.   :mellow:
 
 


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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~


#56 tinpins

 
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Posted 24 May 2013 - 03:13 AM

Your journey sounds tough and I would find not being able to swim very disheartening.

 

This condition is so challenging ... the roller coaster effect of the symptoms and emotions is hard to deal with ... yes I confess overwhelming at times ...  and I am so thankful to have found this forum.  Our specialists and PCP/GPs are great at diagnosing and prescribing ... but then we're mostly on our own to cope. 

 

This may be of interest to you. When I saw my specialist last week he prescribed Dapsone (which I won't take If I can avoid it) but he gave me a requisition to have a blood test ... a G6PD screening. He said that was necessary to check before starting on this medication. The link is to a wiki article about Glucose-6-phosphate dehydrogenase deficiency.

 

I'm struggling along, as we all on on this journey, and some days are better than others. The "weird" new symptoms are sometimes alarming and I come here to read about others' journeys and realize that it's all part of the process. In my food diary I note symptoms on the facing page to keep track. It will also be a reminder of how far I have come when things start to feel better : )

 

I've been borrowing books from the library and that has been an interesting journey in itself. Some are just a waste of time even checking them out, but one that has been helpful at this point in my journey is by Jules E. Dowler Shepard "Celiac Disease and Living Gluten-Free".  It's an easy book to pick up and read when your head hurts : ) For example:

 

Research has shown than any amount of gluten can damage the intestinal villi of a person with celiac disease (even as little as 1/8 teaspoon of gluten - approximately 1/1000, or 0.5 percent of a slice of bread). Even without symptoms, you are still risking medical complications from celiac disease if you do not follow a strict gluten-free diet and avoid cross-contamination.

 

Simple reminder of the seriousness of this condition. What I like about the book is that she has been through the misery and has found relief and her book takes you through the process step by step. It's nice to have as a resource. I've got other books for nutritional information like the one written by Shelly Case, but sometimes you need encouragement and a view of where you are going as well.  By the time you get to a diagnosis after so many years you feel pretty beat up and this book helps.

 

Dr Weil recommends avoiding alcohol (not that I ever drank that much ... but it's nice for celebrations) and NSAIDS (can't take anyway) ...okay I can handle that. But when my food allergy tests last week revealed a strong reaction to chocolate I confess to feeling alarmed. Yikes ... what next? No wonder we all feel overwhelmed  :huh:  And here's a dietitian who is on this journey herself:

http://inspiredrd.co...ac-disease.html


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

 

 


#57 sisterlynr

 
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Posted 24 May 2013 - 11:02 PM

I googled about pool water and I think I'm going to visit the YMCA tomorrow.  I refuse to let Celiac/DH rule my daily activities, other than my food intake.  

 

I saw my Rhuemy this morning for a follow-up.  He asked to see my rash again.  The belly is some better but still inflamed.  He increased my Dapsone usage.  I have had the blood test you mentioned Tinpins.  My liver stats stay around 55 and have for several years, may be from fatty liver, which is mild.

 

He assured me he has a few patients on much higher levels of Dapsone but wants to take 'baby steps' with ordering more, for me.  My PCP initially ordered 2 tabs a day of 25 mg, now I will take 3 tabs to equal 75 mg.  Hopefully the additional Dapsone will help!  


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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~


#58 tinpins

 
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Posted 25 May 2013 - 03:17 AM

Hopefully the increased levels of Dapsone will help you ... please share the outcome. I feel the same way as you about not letting this thing control my life ... but some days it controls mine and there's nothing I can do about it. I used to swim regularly but chlorine is not my friend and I had to stop because I was getting debilitating migraine headaches from the combination of the exercise, chlorine and light. I googled about chlorine too and there are some DH folks who reacted badly to it. But I'm beginning to understand that's the nature of celiac too ... different symptoms and reactions. I do hope you can swim and not be negatively affected by the experience.  :)


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

 

 


#59 pricklypear1971

 
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Posted 25 May 2013 - 07:01 AM

I googled about pool water and I think I'm going to visit the YMCA tomorrow. I refuse to let Celiac/DH rule my daily activities, other than my food intake.

I saw my Rhuemy this morning for a follow-up. He asked to see my rash again. The belly is some better but still inflamed. He increased my Dapsone usage. I have had the blood test you mentioned Tinpins. My liver stats stay around 55 and have for several years, may be from fatty liver, which is mild.

He assured me he has a few patients on much higher levels of Dapsone but wants to take 'baby steps' with ordering more, for me. My PCP initially ordered 2 tabs a day of 25 mg, now I will take 3 tabs to equal 75 mg. Hopefully the additional Dapsone will help!


I found pool water burned my dh sores...and the wet bathing suit rubbed them. That aside, I was fine. Just see how you 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!

#60 tinpins

 
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Posted 26 May 2013 - 04:59 PM

3 weeks tomorrow and there is some definite improvement ... for the first time in over 15 months I was able to have a shower and not be in pain from the water on my back.  So my DH has subsided in intensity in only 3 weeks. Still covered in lesions but they are not as itchy or painful and there are no new eruptions. That's huge  :)

 

But the gut issues/pain are still very problematic. Buckwheat (organic, plain)  was a trigger yesterday, and tonight I craved rice pudding (baked, brown rice and rice milk) and that was a big mistake. :( The food diary is a huge help and my list on the fridge of allowable foods keeps getting amended. I'm thinking the SCD might be the way to go?


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