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Celiac.com Celiac Disease & Gluten-Free Diet Forum: Dh On My Scalp - Celiac.com Celiac Disease & Gluten-Free Diet Forum
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Dh On My Scalp
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Posted 30 July 2009 - 01:07 PM
I was diagnosed 7/10/09 with Celiac. Almost immediately after, I got confirming biopsy for dh on my scalp, back and forehead. The back and forehead had JUST started, and thankfully - and is going away, FAST!
I can't remember in the last 15-20 years, or more, when I was not trying to control a *psoriasis* outbreak on my scalp. Special shampoos, creams and WEARING GLOVES - in order to avoid scratching my scalp and what skin was left that was actually not raw, bleeding or worse. July 22 was the beginning of my gluten/casein/soy/eggs free elimination.
I AM SHOCKED. This is the FIRST TIME in almost two decades that I have nothing - NOTHING - on my scalp, EXCEPT HAIR!!!!!!!!!!!!! NO LUMPS, no pussy bumps, no bleeding under my nails when I scratch an itch (and I have barely even scratched an itch, at that, in nine days!
I AM SO ECSTATIC! I know I have a LOOOOOOOOONG way to go with the rest of my horrible Celiac ailments, due to YEARS of misdiagnoses... BUT, I HAD to share this! I am almost brought to tears, by the simple fact that my head is almost completely cleared up... And, I have not even noticed that brushing it does not even hurt!! 
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Posted 30 July 2009 - 01:12 PM
I'm so happy for you!! It's wonderful, isn't it, when we finally have an answer--and better still that there's something we can do about it.
Patti
"Life is what happens while you're busy making other plans"
"When people show you who they are, believe them"--Maya Angelou
"Bloom where you are planted"--Bev
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Posted 30 July 2009 - 03:37 PM
I felt like jumping for joy too. I had the sores all over my face also and it is soooo wonderful when they are gone. I am so glad you had a quick response, I did to.
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
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Posted 30 July 2009 - 04:04 PM
Yay for you!
Bea
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!
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Posted 30 July 2009 - 04:37 PM
Hi Lawspike,
I'd love to know where you're located. I'm looking for a Doctor in the LA area to determine if I too have DH as I've had the SAME symptoms on my scalp for over 2 years now & would LOVE to find out what it is!!
Thanks!!!
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Posted 30 July 2009 - 05:03 PM
 rpinette, on Jul 30 2009, 05:37 PM, said:
Hi Lawspike,
I'd love to know where you're located. I'm looking for a Doctor in the LA area to determine if I too have DH as I've had the SAME symptoms on my scalp for over 2 years now & would LOVE to find out what it is!!
Thanks!!!
Hi! I am in TN. The armpit of the south! LOL.... was relocated for husband's career - from South Florida! I actually marched back into the HARVARD trained dermatologist I was seeing here - AFTER my Celiac biopsy and follow up bloodtests came back SCREAMING CELIAC... and DEMANDED he biopsy the scabby things... on my scalp. One way to tell if it is DH. SURE AS ANYTHING... it was! I wanted to knock him out. 20 creams and hundreds of dollars in visits... over 2.5 years...
tell your dermatologist you have Celiac and want a biopsy... they should have NO problem... they just scraped one of my things on the scalp... a few days I waited and WHALAH!
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Posted 31 July 2009 - 03:16 AM
Lawspike, on Jul 30 2009, 01:07 PM, said: I was diagnosed 7/10/09 with Celiac. Almost immediately after, I got confirming biopsy for dh on my scalp, back and forehead. The back and forehead had JUST started, and thankfully - and is going away, FAST!
I can't remember in the last 15-20 years, or more, when I was not trying to control a *psoriasis* outbreak on my scalp. Special shampoos, creams and WEARING GLOVES - in order to avoid scratching my scalp and what skin was left that was actually not raw, bleeding or worse. July 22 was the beginning of my gluten/casein/soy/eggs free elimination.
I AM SHOCKED. This is the FIRST TIME in almost two decades that I have nothing - NOTHING - on my scalp, EXCEPT HAIR!!!!!!!!!!!!! NO LUMPS, no pussy bumps, no bleeding under my nails when I scratch an itch (and I have barely even scratched an itch, at that, in nine days!
I AM SO ECSTATIC! I know I have a LOOOOOOOOONG way to go with the rest of my horrible Celiac ailments, due to YEARS of misdiagnoses... BUT, I HAD to share this! I am almost brought to tears, by the simple fact that my head is almost completely cleared up... And, I have not even noticed that brushing it does not even hurt!!
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Posted 31 July 2009 - 03:20 AM
I am so glad for you Very many of us know the joy of finding out what is wrong and finding a solution. Good luck.
declan
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Posted 31 July 2009 - 06:24 AM
Hi There,
Congrats on finally having an answer and a solution to the problem. My name is Bonnie Bryant and I have a friend who just found out she has Celiac Disease and she needs special shampoo to keep her hair from drying out and body washes to keep her skin from getting irritated. I sell AVon and she asked me if they Have Gluten free Product like shampoo, body wash conditioner makeup. etc. And i have a list of all that they have that IS GLUTEN FREE. I was shocked myself asd i did just start working with Avon. They have an amaxing amount of Gluten Free Products. If you need any way of finding out let me know...my email is Bonnie@mulelighting.com and my Avon web siite is:
http://www.youravon.com/bbryant9632
Thanks for sharing !!
Bonnie bryant
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Posted 31 July 2009 - 06:28 AM
Congrats! I can relate to your elation on realizing what has really been going on all these years and can now take control and regain your heath. Life is Good!
Transplanted Southerner in Sunny So.Cal.
Misdiagnosed 47 years
Diagnosed Gluten Intollerent Aug. 22. '08
Blood Tests Weak Positive to Negative probably due to low Gluten intake for 8 weeks before testing.
Opted not to have Biopsy.
Positive DH testing Oct. 30,'08
Gluten free since Oct. 28, '08
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Posted 01 August 2009 - 05:33 AM
Could someone tell me if you can still get this dermatitis if you are already on a gluten free diet? I was diagnosed about 7 years ago, but have this dermatitis very bad in my scalp and forehead. What does anyone if anything use for this condition?
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Posted 03 August 2009 - 06:12 AM
romi, on Aug 1 2009, 05:33 AM, said: Could someone tell me if you can still get this dermatitis if you are already on a gluten free diet? I was diagnosed about 7 years ago, but have this dermatitis very bad in my scalp and forehead. What does anyone if anything use for this condition?
Have you checked whether your shampoos etc are safe? What has you dermatologist said about it and have they tested it and confirmed it is DH? If they have then gluten may be sneaking in somewhere.
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
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Posted 03 August 2009 - 09:04 AM
You could also have some other allergen...or even candida overgrowth showing on your skin. But do check, maybe the other respondent is right and some gluten has snuck in somewhere or other...
Bea
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!
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Posted 17 August 2009 - 04:27 PM
Lawspike, on Jul 30 2009, 06:03 PM, said: Hi! I am in TN. The armpit of the south! LOL.... was relocated for husband's career - from South Florida! I actually marched back into the HARVARD trained dermatologist I was seeing here - AFTER my Celiac biopsy and follow up bloodtests came back SCREAMING CELIAC... and DEMANDED he biopsy the scabby things... on my scalp. One way to tell if it is DH. SURE AS ANYTHING... it was! I wanted to knock him out. 20 creams and hundreds of dollars in visits... over 2.5 years...
tell your dermatologist you have Celiac and want a biopsy... they should have NO problem... they just scraped one of my things on the scalp... a few days I waited and WHALAH!
THANK YOU LAWSPIKE. I am going to ask my Dermatologist to do a biopsy & check for DH.
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