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Does This Sound Like Dh?

rash

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#1 Tigercat17

 
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Posted 04 June 2013 - 04:43 PM

HI all!

 

I've been gluten free for almost four years and doing well. But now I have a extremely itchy rash that looks like it could be a DH for the last two months. The doctor took a biopsy and it came back negative. He gave me prednisone. It seemed liked it helped, but it didn't take it completely away. He also gave me Triamcinolon ointment (corticosteroid). I've been using it for almost three weeks now. It helps to take the itch out, but I'm not sure how long I should use it. I tried to stop using it and then the rash just keeps coming back. It will go away on my legs and then two days later it's back and so itchy.

 

It moves to my arms, back, legs and it really likes to stay on my shoulders. It's never on my face, but I do think it might be on the back of my head in my hair.

 

So my question is what should I do next? I was reading about the low idioine diet. I actually had thyriod cancer five years ago and I'm getting rechecked for it right now. I also wonder if it's from stress. I feel that stress can make it worse. Should I just try the low idioine diet on my own and see if it helps? I do eat a lot of nuts and chips. I'm also wondering if it's a corn allergy, but I never reacted this way to corn before.

 

I'm also wondering if I'm getting gluten from something and that's why I have this rash. I never had a rash like this before and it's so frustrating. I keep a food journal all the time and I'm very careful, but I'm thinking I should recheck everything just to be sure.

 

 

Thanks everyone!


  • 0
Lisa

Infertility since 1995/Endometriosis
Hasimoto Thyroid disease 1998
Enlarged Abdominal Lymph nodes since 2003 - Stable
Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008
Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet
Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet
Celiac disease - positive upper endoscopy & Blood Test 9-2009
Undiagnosed celiac for 20 years - Gluten free since 9-13-09

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#2 squirmingitch

 
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Posted 04 June 2013 - 04:56 PM

If you have been gluten-free for 4 years then you would not present with dh UNLESS you have been getting cc'd or glutened. You can test the rash by seeing if going low iodine makes it go away. If it does then you could be pretty darn sure you have been getting gluten from somewhere. BTW, the steroids will make dh better but the down side is that when the steroids are withdrawn; the rash comes back with a vengeance!

A biopsy of dh after being gluten-free for 4 years would come back negative. It certainly wouldn't come back positive. Did the doc take it from a clear place adjacent to an active lesion? If he took it on the lesion then he did it wrong. If it was done correctly then that contradicts that you are getting gluten from something EXCEPT for the fact that the steroids (topical or oral) will make the biopsy negative. So the biopsy that was done is completely useless whether it was taken correctly or not. It would take something like 2 months off the steroid creams before it will not affect the biopsy results.


  • 1

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.

 


#3 IrishHeart

 
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Posted 04 June 2013 - 05:25 PM

Hi Lisa!

long time no see! :)

 

I cannot add much to everything that Squirmy so eloquently said.....except this: you can be allergic to something  ...and it does not mean you are being glutened.

 

I get rashes on my face and scalp from high histamine foods, yet I have no "clinical" allergies(IgE mediated) nor do I have DH

 

Have you been to an allergist and shown her the rash? Have the skin prick testing done? 


  • 1

"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 

"Do or do not. There is no try. "-  Yoda.

"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


#4 Tigercat17

 
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Posted 04 June 2013 - 06:27 PM

Hi Lisa!

long time no see! :)

 

I cannot add much to everything that Squirmy so eloquently said.....except this: you can be allergic to something  ...and it does not mean you are being glutened.

 

I get rashes on my face and scalp from high histamine foods, yet I have no "clinical" allergies(IgE mediated) nor do I have DH

 

Have you been to an allergist and shown her the rash? Have the skin prick testing done? 

Hi Irishheart!

 

So nice to hear from you! Sounds like you are feeling well! I'm so glad! Thanks for all the info Squirmy! That really blew my mind! I was thinking about gluten, too. I'm going to recheck everything. I know everything I'm eating is gluten free, but I also been there before where I was getting glutened by something that was supposed to be gluten-free. :( I swear the only time I have health problems is because I'm getting a small amount of gluten from something that's supposed to be gluten-free.

 

I haven't been to the allergy doctor, yet, for this but I've been to allergy doctors before and had skin tests done and had high positives with almost every food. The doctor told me if I started to avoid any of those foods I'd be in big trouble. But I know I get bloated with corn and soy so I avoid it a little, except for a few items like condiments. Do you think I should make an appointment with one and get tested for corn and soy?

 

I really haven't changed my foods much, except for my dish washing detregent. I'll call them tomorrow. It's just Casade. I do feel like I'm getting glutened now though. I'm starting to have that same stomach pain, but I don't get a sore throat anymore like I did when I first got diagnosed. My symptoms seem like they've changed a lot in the last four years. :( Guess I have to get to work and figure out what's going on.


  • 0
Lisa

Infertility since 1995/Endometriosis
Hasimoto Thyroid disease 1998
Enlarged Abdominal Lymph nodes since 2003 - Stable
Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008
Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet
Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet
Celiac disease - positive upper endoscopy & Blood Test 9-2009
Undiagnosed celiac for 20 years - Gluten free since 9-13-09

#5 squirmingitch

 
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Posted 04 June 2013 - 06:29 PM

Okay, wait. I just re-read Lisa's post & apparently she began the steroids after the biopsy. So, that takes us back to whether the biopsy was done correctly or not.

 

And I agree with IH in that you could be allergic to something ~~~ even something you were never allergic to in the past. We can develop allergies out of seemingly nowhere.

 

But I will also say again that trying the low iodine diet would be a pretty sure tale of if it is dh or not. The vast majority of us get flares with iodine but there have been a few who say iodine does not affect their dh.


  • 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.

 


#6 squirmingitch

 
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Posted 04 June 2013 - 06:32 PM

Lisa, IF you are getting glutened & therefore getting dh then odds are that your GI issues will not be what you experienced before. When we have dh we tend not to have strong GI issues like say IH or any of the others who do not have dh so it would not be surprising that you're feeling different than before.


  • 1

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 04 June 2013 - 06:34 PM

 

 

I haven't been to the allergy doctor, yet, for this but I've been to allergy doctors before and had skin tests done and had high positives with almost every food. The doctor told me if I started to avoid any of those foods I'd be in big trouble. 

I am not sure what this means, hon.

 

"If you started to avoid any of those foods, you'd be in trouble??" ??


  • 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 

"Do or do not. There is no try. "-  Yoda.

"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 Tigercat17

 
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Posted 04 June 2013 - 06:34 PM

Okay, wait. I just re-read Lisa's post & apparently she began the steroids after the biopsy. So, that takes us back to whether the biopsy was done correctly or not.

 

And I agree with IH in that you could be allergic to something ~~~ even something you were never allergic to in the past. We can develop allergies out of seemingly nowhere.

 

But I will also say again that trying the low iodine diet would be a pretty sure tale of if it is dh or not. The vast majority of us get flares with iodine but there have been a few who say iodine does not affect their dh.

 

Opps, sorry Squirming! I didn't have the steroids until after the biopsy. I just wanted to clear that up. I just typed that in wrong. I started to eat low iodine tonight, so we'll see if it helps. It's just so frustrating. :(


  • 0
Lisa

Infertility since 1995/Endometriosis
Hasimoto Thyroid disease 1998
Enlarged Abdominal Lymph nodes since 2003 - Stable
Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008
Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet
Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet
Celiac disease - positive upper endoscopy & Blood Test 9-2009
Undiagnosed celiac for 20 years - Gluten free since 9-13-09

#9 IrishHeart

 
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Posted 04 June 2013 - 06:39 PM

from all I have read, there is a small subset of patients with celiac disease who develop DH even though they have been on a strict gluten free diet.

but I am wondering if you have been so careful all this time, if perhaps this rash is not DH. but a rash from something else.

 

IMHO


  • 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 

"Do or do not. There is no try. "-  Yoda.

"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


#10 Tigercat17

 
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Posted 04 June 2013 - 06:41 PM

I am not sure what this means, hon. If you started to avoid any of those foods, you'd be in trouble??

 

Sorry, I'm kind of foggy today because of the thyroid cancer testing I'm going through today. And I'm super tried. I guess the doctor was just saying that if I avoid all the foods that I had positive results to, I could become more sensitive to all of them and become malnourished. Also he told me that just because you have a positive skin test it doesn't necessarily mean that you have trouble digesting it. Was he wrong to say that? I wouldn't be surprised.  :rolleyes:


  • 0
Lisa

Infertility since 1995/Endometriosis
Hasimoto Thyroid disease 1998
Enlarged Abdominal Lymph nodes since 2003 - Stable
Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008
Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet
Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet
Celiac disease - positive upper endoscopy & Blood Test 9-2009
Undiagnosed celiac for 20 years - Gluten free since 9-13-09

#11 Tigercat17

 
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Posted 04 June 2013 - 06:52 PM

from all I have read, there is a small subset of patients with celiac disease who develop DH even though they have been on a strict gluten free diet.

but I am wondering if you have been so careful all this time, if perhaps this rash is not DH. but a rash from something else.

 

IMHO

I actually thought it was poison ivy at first, but it's been two months now. Plus you would think the steroids would have taken it away completely. Right now, gluten CC and corn are my biggest suspect. It seemed after I took the prednisone it was looking like it was going away, then I ate a gluten-free cereal (Arrowmills Buckwheat), Frito's and Popcorn two days ago. My stomach was so bloated that day and it seemed like the rash got worse. :(

 

I really hope it's not corn, but I've been suspecting I have a problem with it because I can't eat a lot of gluten-free cereals. A lot of them have corn in them. I've never gotten a rash before with any food.


  • 0
Lisa

Infertility since 1995/Endometriosis
Hasimoto Thyroid disease 1998
Enlarged Abdominal Lymph nodes since 2003 - Stable
Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008
Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet
Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet
Celiac disease - positive upper endoscopy & Blood Test 9-2009
Undiagnosed celiac for 20 years - Gluten free since 9-13-09

#12 IrishHeart

 
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Posted 05 June 2013 - 04:33 AM

Sorry, I'm kind of foggy today because of the thyroid cancer testing I'm going through today. And I'm super tried. I guess the doctor was just saying that if I avoid all the foods that I had positive results to, I could become more sensitive to all of them and become malnourished. Also he told me that just because you have a positive skin test it doesn't necessarily mean that you have trouble digesting it. Was he wrong to say that? I wouldn't be surprised.  :rolleyes:

 

If you avoid foods you have an allergy to, you will not have a reaction. This does not mean you will become more sensiitive to them and become malnourished. That does not seem plausible to me.IMO

 

Allergic reaction are not the same as intolerance reactions, so yes it is true you may not have digestive issues from foods you are allergic to.

 

Sorry you are going through the thyroid cancer testing again. I'll hold all good thoughts for you.


  • 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 

"Do or do not. There is no try. "-  Yoda.

"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


#13 squirmingitch

 
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Posted 05 June 2013 - 09:53 AM

I am holding good thoughts for you too. (((((HUGS))))))

 

I don't know if you're on any thyroid replacement meds b/c of the thyroid cancer but if you are on synthroid or levothyroxine & such then you are getting a certain amount of iodine from them but you can't stop taking them either.


  • 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.

 






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