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Does Dh Always Itch?


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#1 roomorganizing

 
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Posted 01 February 2013 - 07:41 PM

I've had spots that appear mostly on my hands, wrists, and arms for about 6-7 years now. I've also had them show up on my legs, tops of feet, my lip, elbows and occasionally my back. I always thought it was eczema or psoriasis, but am now wondering. The spots usually present as small, round dry spots that will grow in size but are typically barely raised. Generally, they don't itch much, are just very dry and rough. Occasionally, these areas will itch like crazy for a day or two, but then go back to just being a nuisance and quite unsightly. They are usually pink and dry, but sometimes will turn into a "lesion." When they are itchy, they are bright red/maroon. I never get the blisters that are typical of DH. My spots will last for months, and once they are gone the skin is white. Hence, I have lots of white spots up and down my arms. Biopsy of a spot on my leg was inconclusive, but doc said her gut feeling was that it's the early stages of psoriasis, that it can sometimes take years to fully develop. I've seen pics here that look very similar to mine, so now I wonder if I should have had it tested for DH (I know this must be done on clear skin adjacent to a lesion). But because it doesn't constantly itch, I also wonder if could be DH??

I have one area that I know has to be DH. It's at the top of my butt and tingles/itches before an eruption. While it's active, it itches like crazy, but can be tender if scratched or rubbed. It's always in the same place. If it rears its ugly head again, I will definitely call to have a biopsy done immediately.

Thank you for any thoughts.
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#2 a1956chill

 
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Posted 02 February 2013 - 04:22 AM

I have been gluten free for over 3 years. I still have a very small amount of lesions on my back and butt . They only itch to the maddening degree they used too if I get glutened or consume to much iodine .But I always can feel them .
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#3 jlaw

 
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Posted 02 February 2013 - 11:19 PM

Mine only itched to the point of insanity while I was still consuming gluten. Once I stopped, it's like an itch that's constantly there in the background but not an acute, insatiable itch.
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DH dx by skin biopsy July 2012

#4 a1956chill

 
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Posted 03 February 2013 - 04:16 AM

Mine only itched to the point of insanity while I was still consuming gluten. Once I stopped, it's like an itch that's constantly there in the background but not an acute, insatiable itch.

You described it very well . I sure dont miss that madding want to rip your skin off itch at all
' shudders even thinking of it ' :ph34r:
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#5 Itch Be Gone

 
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Posted 03 February 2013 - 08:43 PM

About 15 years ago, I developed an unbearably itchy rash over most of my body, that lasted almost a year. Thankfully, it eventually cleared up but after that, I would, from time-to-time, develop itchy patches and also experience major flare-ups 2 or 3 times a year that would last about a month or so. Last August, I developed a horrible, prickly, burning rash over large parts of my body that lasted 4 months (until December). After eating a muffin one day and experiencing a major flare-up shortly afterwards, I decided to go on a strict gluten-free diet. Within a week, I was almost rash-free! What a gift to be free of that horrible itch and to have soft, clear skin once more! But sadly, my joy was short-lived! For the last 3 weeks, I have been struggling with extremely itchy patches on my arms, hips, back and face - strangely, the rash always seems to return in the same places on my body. I had a biopsy done, which came back stating that the results were consistent with an allergy to medication! I was not taking any medication! No blood tests or any other tests have been done - the dermatologist and my family doctor did not seem to feel that it was necessary. The fact that the rash cleared up so quickly after eliminating gluten completely from my diet (I am hugely vigilant about this) suggests to me that I have a sensitivity to gluten. In addition, my digestion seems to have improved (very little bloating, gas, and constipation now), I have more energy, and I am experiencing much less joint stiffness and pain. But, why oh why, am I experiencing this dreadful rash again?! Thankfully, although it is still bumpy and very itchy, it does not seem to be as extensive (at least, not yet) as it was back in the fall! But, the mysterious rash continues to be very uncomfortable and, at times, I feel as if I am unable to cope. It is certainly a dreadful thing to have to live with, that is for sure! I am wondering if there is anything else I can do. Would taking a probiotic help? When people are sensitive to gluten, might there be other related foods that could also trigger attacks? If anyone has any suggestions, I would be very grateful.
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#6 a1956chill

 
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Posted 04 February 2013 - 02:15 AM

About 15 years ago, I developed an unbearably itchy rash over most of my body, that lasted almost a year. Thankfully, it eventually cleared up but after that, I would, from time-to-time, develop itchy patches and also experience major flare-ups 2 or 3 times a year that would last about a month or so. Last August, I developed a horrible, prickly, burning rash over large parts of my body that lasted 4 months (until December). After eating a muffin one day and experiencing a major flare-up shortly afterwards, I decided to go on a strict gluten-free diet. Within a week, I was almost rash-free! What a gift to be free of that horrible itch and to have soft, clear skin once more! But sadly, my joy was short-lived! For the last 3 weeks, I have been struggling with extremely itchy patches on my arms, hips, back and face - strangely, the rash always seems to return in the same places on my body. I had a biopsy done, which came back stating that the results were consistent with an allergy to medication! I was not taking any medication! No blood tests or any other tests have been done - the dermatologist and my family doctor did not seem to feel that it was necessary. The fact that the rash cleared up so quickly after eliminating gluten completely from my diet (I am hugely vigilant about this) suggests to me that I have a sensitivity to gluten. In addition, my digestion seems to have improved (very little bloating, gas, and constipation now), I have more energy, and I am experiencing much less joint stiffness and pain. But, why oh why, am I experiencing this dreadful rash again?! Thankfully, although it is still bumpy and very itchy, it does not seem to be as extensive (at least, not yet) as it was back in the fall! But, the mysterious rash continues to be very uncomfortable and, at times, I feel as if I am unable to cope. It is certainly a dreadful thing to have to live with, that is for sure! I am wondering if there is anything else I can do. Would taking a probiotic help? When people are sensitive to gluten, might there be other related foods that could also trigger attacks? If anyone has any suggestions, I would be very grateful.

I have to extremely careful about the amount of iodine I consume.
  • 0

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#7 Itch Be Gone

 
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Posted 04 February 2013 - 08:52 AM

I have to extremely careful about the amount of iodine I consume.


Thank you. I will do check this out. Really appreciate your suggestion.
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#8 sisterlynr

 
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Posted 28 March 2013 - 02:47 PM

I'd say if you don't have the itch, sting and burning (like being in a nettle patch) the rash isn't DH.  It also presents on both sides of the body.  It's weird but true.

 

You may want to consider the breakout at the tailbone area could be Shingles.  My doctor told me that if the nerves in that area are inflamed, Shingles can pop out.  I usually had Shingles run along my sciatica nerve (on thigh) but I first broke out at the tailbone area.


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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~


#9 mendylou

 
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Posted 05 April 2013 - 04:09 PM

About 15 years ago, I developed an unbearably itchy rash over most of my body, that lasted almost a year. Thankfully, it eventually cleared up but after that, I would, from time-to-time, develop itchy patches and also experience major flare-ups 2 or 3 times a year that would last about a month or so. Last August, I developed a horrible, prickly, burning rash over large parts of my body that lasted 4 months (until December). After eating a muffin one day and experiencing a major flare-up shortly afterwards, I decided to go on a strict gluten-free diet. Within a week, I was almost rash-free! What a gift to be free of that horrible itch and to have soft, clear skin once more! But sadly, my joy was short-lived! For the last 3 weeks, I have been struggling with extremely itchy patches on my arms, hips, back and face - strangely, the rash always seems to return in the same places on my body. I had a biopsy done, which came back stating that the results were consistent with an allergy to medication! I was not taking any medication! No blood tests or any other tests have been done - the dermatologist and my family doctor did not seem to feel that it was necessary. The fact that the rash cleared up so quickly after eliminating gluten completely from my diet (I am hugely vigilant about this) suggests to me that I have a sensitivity to gluten. In addition, my digestion seems to have improved (very little bloating, gas, and constipation now), I have more energy, and I am experiencing much less joint stiffness and pain. But, why oh why, am I experiencing this dreadful rash again?! Thankfully, although it is still bumpy and very itchy, it does not seem to be as extensive (at least, not yet) as it was back in the fall! But, the mysterious rash continues to be very uncomfortable and, at times, I feel as if I am unable to cope. It is certainly a dreadful thing to have to live with, that is for sure! I am wondering if there is anything else I can do. Would taking a probiotic help? When people are sensitive to gluten, might there be other related foods that could also trigger attacks? If anyone has any suggestions, I would be very grateful.


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#10 mendylou

 
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Posted 05 April 2013 - 04:22 PM

I have been gluten free for 2 1/2 years. I still have DH outbreaks but they are not as severe as they used to be.  I am very sensitive to iodine. It will cause an outbreak within hours. I used to break out all over but now it seems to be confined to my arms and across my shoulders and back and on my buttocks but in a much smaller area than it used to.  I was one of those who seemed to improve immediately and couldn't figure out why I would have major breakouts for no apparent reason.  I believe  I have had this build up under my skin for so many years that it will take many years to get rid of it.  I had skin issues, allergies as a child & I am now 60 yrs old. I also had the migraines, joint issues, asthma, seasonal allergies, etc for all these years. I so look forward to the day that I do not itch.  Don't give up hope, for some of us it just takes longer.


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#11 kag10

 
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Posted 05 April 2013 - 06:42 PM

About 15 years ago, I developed an unbearably itchy rash over most of my body, that lasted almost a year. Thankfully, it eventually cleared up but after that, I would, from time-to-time, develop itchy patches and also experience major flare-ups 2 or 3 times a year that would last about a month or so. Last August, I developed a horrible, prickly, burning rash over large parts of my body that lasted 4 months (until December). After eating a muffin one day and experiencing a major flare-up shortly afterwards, I decided to go on a strict gluten-free diet. Within a week, I was almost rash-free! What a gift to be free of that horrible itch and to have soft, clear skin once more! But sadly, my joy was short-lived! For the last 3 weeks, I have been struggling with extremely itchy patches on my arms, hips, back and face - strangely, the rash always seems to return in the same places on my body. I had a biopsy done, which came back stating that the results were consistent with an allergy to medication! I was not taking any medication! No blood tests or any other tests have been done - the dermatologist and my family doctor did not seem to feel that it was necessary. The fact that the rash cleared up so quickly after eliminating gluten completely from my diet (I am hugely vigilant about this) suggests to me that I have a sensitivity to gluten. In addition, my digestion seems to have improved (very little bloating, gas, and constipation now), I have more energy, and I am experiencing much less joint stiffness and pain. But, why oh why, am I experiencing this dreadful rash again?! Thankfully, although it is still bumpy and very itchy, it does not seem to be as extensive (at least, not yet) as it was back in the fall! But, the mysterious rash continues to be very uncomfortable and, at times, I feel as if I am unable to cope. It is certainly a dreadful thing to have to live with, that is for sure! I am wondering if there is anything else I can do. Would taking a probiotic help? When people are sensitive to gluten, might there be other related foods that could also trigger attacks? If anyone has any suggestions, I would be very grateful.

I was diagnosed with DH before Celiacs and suffered from the skin rash for 5 years before being diagnosed.  Even after switching to a gluten free diet, the rash persisted.  My dermatologist suggested going on Dapsone and within hours of my first dose, the itching began to subside.  This May, I will have been on Dapsone for one year and it has been my saving grace from itching and the awful blisters. 


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