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Extraintestinal Manifestations


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#1 MartyrMom2

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Posted 06 October 2012 - 10:10 PM

I'm curious to see if anyone can relate to my skin issues. In September '09, I developed an intensely pruritic, symmetrical rash on my inner thighs. After trying and failing with at-home treatments, I went to the doctor. She mentioned shingles, but I told her I've never had chicken pox. She prescribed me an antiviral and an antihistamine. I finished the RX, but it didn't phase the rash, so I went for a subsequent visit. She then prescribed Nystatin, a topical cream (again, didn't phase the rash). She recommended I consult a dermatologist, but without health ins. and paying out of pocket at the time, a dermatologist was out of the question. No one else in my household has had any type of rash, it hasn't spread, and I can't pinpoint it to anything in particular. The rash comes and goes and its presentation changes as well, much like my bowel movements/abdominal pain. There seems to be no rhyme or reason for any of it. Three years later (present day), the rash persists, as do the gastrointestinal symptoms. I'm perplexed to say the least. Just last year, I developed a single lesion (completely different than the other rash) on one of my buttocks. I just assumed it was a spider bite or something. Over the course of the past year, these lesions still appear in singular fashion, last for several weeks, and disappear, leaving behind a purple mark. These lesions do not itch and like the rash, they come and go. Has anyone else had this happen to them? Any suggestions or ideas what could be going on?
  • 0
Symptoms: Abdominal pain, diarrhea, constipation, acid reflux, fatigue, unexplained bruising, unidentified skin rashes, lactose intolerance, and a myriad of other health issues/complaints.
HLA-DQ8 Gene (Enterolab, March 2009)
Diagnoses: IBS (1-19-06), Hypokalemia (7-13-07), Hypothyroidism (10-17-08)
Medications:(Synthroid 0.075 MG)
Family History of Autoimmune Diseases: Maternal Grandmother (Grave’s Disease) Paternal Grandfather (Type 1 Diabetes, RA) Great Aunt (Crohn’s Disease)Self (Hashimoto's, pending test results)

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#2 ravenwoodglass

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Posted 07 October 2012 - 05:20 AM

It sounds like you may have DH, the skin form of celiac. Are you gluten free? If you are gluten free are you strict with the diet? Some of us that have DH also need to avoid iodine for a while as iodine can keep the antibodies active in the skin. After we have been lesion free for a while we do need to add iodine back in as it is an important nutrient.
  • 0
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)

#3 MartyrMom2

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Posted 07 October 2012 - 08:50 AM

It sounds like you may have DH, the skin form of celiac. Are you gluten free? If you are gluten free are you strict with the diet? Some of us that have DH also need to avoid iodine for a while as iodine can keep the antibodies active in the skin. After we have been lesion free for a while we do need to add iodine back in as it is an important nutrient.

Thank you, ravenwoodglass, for taking the time to respond! I am not currently gluten free and have never been. I want to get the bloodwork done before cutting out gluten. I am thinking of bypassing the doctor and ordering the comprehensive celiac panel through healthcheckusa. It would save me the hassle of visiting the doctor, possible doctor's dismissal, etc. Please forgive my ignorance, but when you speak of iodine, are you referring to salt? I hope that this day finds you well!
  • 0
Symptoms: Abdominal pain, diarrhea, constipation, acid reflux, fatigue, unexplained bruising, unidentified skin rashes, lactose intolerance, and a myriad of other health issues/complaints.
HLA-DQ8 Gene (Enterolab, March 2009)
Diagnoses: IBS (1-19-06), Hypokalemia (7-13-07), Hypothyroidism (10-17-08)
Medications:(Synthroid 0.075 MG)
Family History of Autoimmune Diseases: Maternal Grandmother (Grave’s Disease) Paternal Grandfather (Type 1 Diabetes, RA) Great Aunt (Crohn’s Disease)Self (Hashimoto's, pending test results)

#4 squirmingitch

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Posted 07 October 2012 - 09:05 AM

She's speaking not only of salt but of foods high in iodine content. Dairy, egg yolks, seafood, sea salt, carageenan (algae, seaweed or anything from the sea), potato skins. See the link below for a low iodine diet, of course, you need to keep the gluten out of the diet. And you CAN have salt, you just need to buy PLAIN, NON-IODIZED salt.


http://www.thyca.org/rai.htm#diet
  • 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.

 


#5 MartyrMom2

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Posted 07 October 2012 - 09:36 AM

She's speaking not only of salt but of foods high in iodine content. Dairy, egg yolks, seafood, sea salt, carageenan (algae, seaweed or anything from the sea), potato skins. See the link below for a low iodine diet, of course, you need to keep the gluten out of the diet. And you CAN have salt, you just need to buy PLAIN, NON-IODIZED salt.


http://www.thyca.org/rai.htm#diet

Thank you for arming me with such great information, squirmingitch! I can see how you came up with your username! :(
  • 0
Symptoms: Abdominal pain, diarrhea, constipation, acid reflux, fatigue, unexplained bruising, unidentified skin rashes, lactose intolerance, and a myriad of other health issues/complaints.
HLA-DQ8 Gene (Enterolab, March 2009)
Diagnoses: IBS (1-19-06), Hypokalemia (7-13-07), Hypothyroidism (10-17-08)
Medications:(Synthroid 0.075 MG)
Family History of Autoimmune Diseases: Maternal Grandmother (Grave’s Disease) Paternal Grandfather (Type 1 Diabetes, RA) Great Aunt (Crohn’s Disease)Self (Hashimoto's, pending test results)

#6 squirmingitch

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Posted 07 October 2012 - 10:51 AM

Thank you for arming me with such great information, squirmingitch! I can see how you came up with your username! :(


YVW! Posted Image You might look at these photos & see if anything looks like what you get/have.:

http://www.celiac.co...-dh-photo-bank/

It is odd that you say it doesn't itch. DH generally itches like a bear! But, what other sensations do the places have? Do they burn? Sting? What?

Could you take photos & post them? That would help a lot.

Yes, my screen name --- one day I hope to be able to lose that. We joke what I could turn it into --- squirmingitchnomore. no mo itch, itchy not....Posted Image



  • 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.

 


#7 IrishHeart

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Posted 07 October 2012 - 10:59 AM

Yes, my screen name --- one day I hope to be able to lose that. We joke what I could turn it into --- squirmingitchnomore. no mo itch, itchy not....



....or as I have suggested.....just a cool symbol that means "the artist formerly known as squirmy"

;)
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#8 MartyrMom2

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Posted 07 October 2012 - 11:40 AM

YVW! Posted Image You might look at these photos & see if anything looks like what you get/have.:

http://www.celiac.co...-dh-photo-bank/

It is odd that you say it doesn't itch. DH generally itches like a bear! But, what other sensations do the places have? Do they burn? Sting? What?

Could you take photos & post them? That would help a lot.

Yes, my screen name --- one day I hope to be able to lose that. We joke what I could turn it into --- squirmingitchnomore. no mo itch, itchy not....Posted Image

Thanks for the link! I have googled images of DH before. Some of the rashes differ even in what they have pictured under DH. I would say that I do not have the classic presentation of DH. I do not have water or fluid-filled blisters. My rash changes in its presentation, so sometimes I think it's one thing, sometimes another. The rash on my inner thighs itches like a mother. It also burns when it is fully active, but that could be because I scratch so much! It is currently in what I refer to as remission. It, like my gastrointestinal symptoms, seems to have periods of flares and periods of remission and although I have daily abdominal pain, it is mild in comparison to what I call my flares of gastrointestinal upset. I can't explain it. I have a lesion on one of my buttocks and the purplish spots, which are the remnants of the other lesions, on the other one, but I'd be terribly embarassed to upload pics of my booty! When the itchy thigh rash returns, as I'm sure it will, I will most definitely take pics and upload them. I've had it for three years now! That's why I put unexplained skin rashes on my signature. It's just one of my lovely symptoms. I do hope you will one day no longer be squirmingitch!
  • 0
Symptoms: Abdominal pain, diarrhea, constipation, acid reflux, fatigue, unexplained bruising, unidentified skin rashes, lactose intolerance, and a myriad of other health issues/complaints.
HLA-DQ8 Gene (Enterolab, March 2009)
Diagnoses: IBS (1-19-06), Hypokalemia (7-13-07), Hypothyroidism (10-17-08)
Medications:(Synthroid 0.075 MG)
Family History of Autoimmune Diseases: Maternal Grandmother (Grave’s Disease) Paternal Grandfather (Type 1 Diabetes, RA) Great Aunt (Crohn’s Disease)Self (Hashimoto's, pending test results)

#9 mushroom

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Posted 07 October 2012 - 11:52 AM

That the rash fades to purple is one of the trademarks of DH. And if it does that it generally leaves a scar, in my experience ( from looking at my husband's --I have not had it)
  • 0
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#10 MartyrMom2

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Posted 07 October 2012 - 12:27 PM

That the rash fades to purple is one of the trademarks of DH. And if it does that it generally leaves a scar, in my experience ( from looking at my husband's --I have not had it)

Thank you for your input, mushroom! At about the same time that I developed the singular lesions on my buttocks (about a year ago),
I developed sublingual gland swelling as well as a bump on the way-back of my tongue. I went to my physician. She gave me a referral to an ENT and had the nurse practitioner give me an injection into my buttocks. The nurse asked me if I had a staph infection. I had just acquired the lesion, so I told her I didn't know. I know that these lesions on my booty could be something other than DH. I have now had these lesions for a year. They come up one by one, last for several weeks, and finally fade. I do have a slight purple mark where they used to be. I'm just wondering if a staph infection would spontaneously disappear without the aid of something? The rash on my inner thighs has been there for three years and it itches like crazy when it's active. I was given an antiviral and an antifungal, but nothing touches it. The physician ruled out scabies by visual examination only. I would assume it would've spread by now (three years later) and surely someone else in my household would've contacted it had it been something like scabies. I don't know. I could most definitely be wrong. I'm sorry your husband has DH.
  • 0
Symptoms: Abdominal pain, diarrhea, constipation, acid reflux, fatigue, unexplained bruising, unidentified skin rashes, lactose intolerance, and a myriad of other health issues/complaints.
HLA-DQ8 Gene (Enterolab, March 2009)
Diagnoses: IBS (1-19-06), Hypokalemia (7-13-07), Hypothyroidism (10-17-08)
Medications:(Synthroid 0.075 MG)
Family History of Autoimmune Diseases: Maternal Grandmother (Grave’s Disease) Paternal Grandfather (Type 1 Diabetes, RA) Great Aunt (Crohn’s Disease)Self (Hashimoto's, pending test results)

#11 ravenwoodglass

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Posted 07 October 2012 - 01:11 PM

Thank you, ravenwoodglass, for taking the time to respond! I am not currently gluten free and have never been. I want to get the bloodwork done before cutting out gluten. I am thinking of bypassing the doctor and ordering the comprehensive celiac panel through healthcheckusa. It would save me the hassle of visiting the doctor, possible doctor's dismissal, etc. Please forgive my ignorance, but when you speak of iodine, are you referring to salt? I hope that this day finds you well!


I had to just drop iodized salt and take a vitamin without it. Some, like Squirmy have to drop all foods with iodine. You can have DH and other skin conditions. The itchy rash you speak of does sound like DH. Here is a helpful site for info on DH and the testing that needs to be done by a derm to diagnose it. It is important that the doctor be looking for DH as special testing in the lab needs to be done.
http://www.celiac.ni...Dermatitis.aspx

Do stay on gluten until you are done with a celiac related testing and then try going gluten free to see if it helps even if the tests are negative.
I did have symptoms, including DH come and go for years before my problems became a daily happening.
Hope you are feeling better soon.
  • 0
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)

#12 MartyrMom2

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Posted 07 October 2012 - 02:41 PM

I had to just drop iodized salt and take a vitamin without it. Some, like Squirmy have to drop all foods with iodine. You can have DH and other skin conditions. The itchy rash you speak of does sound like DH. Here is a helpful site for info on DH and the testing that needs to be done by a derm to diagnose it. It is important that the doctor be looking for DH as special testing in the lab needs to be done.
http://www.celiac.ni...Dermatitis.aspx

Do stay on gluten until you are done with a celiac related testing and then try going gluten free to see if it helps even if the tests are negative.
I did have symptoms, including DH come and go for years before my problems became a daily happening.
Hope you are feeling better soon.

Thank you for the link and additional information!
  • 0
Symptoms: Abdominal pain, diarrhea, constipation, acid reflux, fatigue, unexplained bruising, unidentified skin rashes, lactose intolerance, and a myriad of other health issues/complaints.
HLA-DQ8 Gene (Enterolab, March 2009)
Diagnoses: IBS (1-19-06), Hypokalemia (7-13-07), Hypothyroidism (10-17-08)
Medications:(Synthroid 0.075 MG)
Family History of Autoimmune Diseases: Maternal Grandmother (Grave’s Disease) Paternal Grandfather (Type 1 Diabetes, RA) Great Aunt (Crohn’s Disease)Self (Hashimoto's, pending test results)

#13 squirmingitch

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Posted 07 October 2012 - 03:43 PM

DH presents in many forms; not just as water blisters. And it presents anywhere on the body. I think it really throws people that almost all of the medical info. out there says elbows, buttocks, knees & so forth because we who have it know it can present any place on the body. My husbands does not present with the classic water blister always mentioned in the med info. yet his is undoubtedly dh & like many on this board report theirs to be. And my husbands dh tends to not itch as much as mine but it burns far more & stings quite a lot.
This is excellent info. on all the differing presentations.
http://www.celiac.co...ns-of-dh-types/

It is possible you could get a dx by getting a dh biopsy but you need an active lesion & the biopsy must be taken from a clear area ADJACENT to an active lesion. Repeat --- this is NOT ON a lesion but adjacent to one. A dx of dh IS a dx of celiac disease.

You should check out the doctors forum to see if you can find a derm or GI or both near you who is well versed in celiac &/or dh. Use the search box on the site to put in the town, cities or state you would be looking in.

http://www.celiac.co...isease-doctors/
  • 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.

 


#14 squirmingitch

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Posted 07 October 2012 - 04:12 PM

....or as I have suggested.....just a cool symbol that means "the artist formerly known as squirmy"

;)


Posted ImagePosted ImagePosted Image Maybe an ampersand. Simply &
  • 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.

 


#15 IrishHeart

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Posted 07 October 2012 - 04:24 PM

Posted ImagePosted ImagePosted Image Maybe an ampersand. Simply &



or *

like a star :)
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif



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