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Gluten-Free For 20 Years With Rash From Hell


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#1 Simone52

 
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Posted 22 July 2013 - 06:18 AM

I have suffered the horrible affects of celiac disease my entire life.  I was misdiagnosed until I was forty.  I had the severe intestinal issues and subsequent secondary autoimmune connective tissue disease.  A strict gluten-free diet has been a blessing.  Here is my question: is it possible to develop DH having been so strictly gluten free for so many years?  I have no other symptoms except a horrible, itchy-beyond-belief rash which travels around my body and waxes and wanes.  This began in mid-May of this year.  I have been taking Allegra 180, Tagamet and using topical steroid cream along with Benedryl.  The rash began on my scalp and back.  It has shown up on my thigh, ankle and left shoulder and breast.  As I said, it cycles.  It begins with a kind of tingling and then a small reddish mark which then turns into small pustules which have a wicked, evil itch! This last about 5 days and then scabs over.  I have one or two days of relief until the cycle begins again in another part of my body.

 

The first dermatologist misdiagnosed me with folliculitis.  I reacted with huge hives from the Septra.  The next dermatologist gave me a shot of cortisol which did nothing.  I have had a skin biopsy.  The path report is negative for DH but says "severe skin reaction and hypersensitive skin".  The doctor said that given my history of celiac, he wants me to take Dapsone. 50mg.  I am wary of this having reacted to the Septra and I don't understand how I could have this rash from hell lasting this long as I am truly very strictly gluten free. Even if I had an accidental ingestion I would think that after 2+ months I would improve.  

 

I have researched all of my hair and body products and removed anything that could have gluten in them.  Still the rash prevails. Should I try the Dapsone?  The doc said it is a good diagnostic tool for DH. Any advice and/or suggestions would be greatly appreciated.


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#2 pricklypear1971

 
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Posted 22 July 2013 - 09:06 AM

If you were biopsies after the steroids (within 3 months seems to be what I hear, but who knows) the biopsy had a strong chance if being falsely negative. And, you've been gluten-free so long....antibodies should be low.

So, yes, some people develop a DH type rash as a glutening reaction after going gluten-free. But rashes seem to go along with ai and gluten, so who knows.

Yes, dapsone is used to treat DH and successful remission could indicate DH. Have you tried a low iodine trial to see if the rash responds? A large percentage of DH responds to iodine: kind if like water in a grease fire. Iodine doesn't cause the rash, but it is a catalyst. I went low iodine and immediately went into remission. Details of the diet here: thyca.org

Also, do you know what condition your hormones/thyroid/adrenals are in? I swear the worse mine were, the more rash I had.
  • 1
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!

#3 Simone52

 
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Posted 22 July 2013 - 09:47 AM

If you were biopsies after the steroids (within 3 months seems to be what I hear, but who knows) the biopsy had a strong chance if being falsely negative. And, you've been gluten-free so long....antibodies should be low.

So, yes, some people develop a DH type rash as a glutening reaction after going gluten-free. But rashes seem to go along with ai and gluten, so who knows.

Yes, dapsone is used to treat DH and successful remission could indicate DH. Have you tried a low iodine trial to see if the rash responds? A large percentage of DH responds to iodine: kind if like water in a grease fire. Iodine doesn't cause the rash, but it is a catalyst. I went low iodine and immediately went into remission. Details of the diet here: thyca.org

Also, do you know what condition your hormones/thyroid/adrenals are in? I swear the worse mine were, the more rash I had.

 

If you were biopsies after the steroids (within 3 months seems to be what I hear, but who knows) the biopsy had a strong chance if being falsely negative. And, you've been gluten-free so long....antibodies should be low.

So, yes, some people develop a DH type rash as a glutening reaction after going gluten-free. But rashes seem to go along with ai and gluten, so who knows.

Yes, dapsone is used to treat DH and successful remission could indicate DH. Have you tried a low iodine trial to see if the rash responds? A large percentage of DH responds to iodine: kind if like water in a grease fire. Iodine doesn't cause the rash, but it is a catalyst. I went low iodine and immediately went into remission. Details of the diet here: thyca.org

Also, do you know what condition your hormones/thyroid/adrenals are in? I swear the worse mine were, the more rash I had.

Thank you so much for your fast reply.  I think I will research the Iodine diet.  Honestly, before this is done there will be nothing I can eat!  Have you taken the Dapsone?  I am really nervous about it as I tend to react to medications.  If you have, did you have any negative reactions or did it work?  I will definitely check out the Iodine issue.


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#4 pricklypear1971

 
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Posted 22 July 2013 - 10:55 AM

Thank you so much for your fast reply. I think I will research the Iodine diet. Honestly, before this is done there will be nothing I can eat! Have you taken the Dapsone? I am really nervous about it as I tend to react to medications. If you have, did you have any negative reactions or did it work? I will definitely check out the Iodine issue.


I didn't try dapsone - by the time we figured out the gluten/rash thing I also figured out the iodine thing...and mine has been in remission.

I'm also allergic to sulfa drugs...

Do ensure your Doc does regular bloodwork to monitor your reaction to dapsone. Some people do have reactions.
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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!

#5 Simone52

 
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Posted 22 July 2013 - 12:31 PM

I didn't try dapsone - by the time we figured out the gluten/rash thing I also figured out the iodine thing...and mine has been in remission.

I'm also allergic to sulfa drugs...

Do ensure your Doc does regular bloodwork to monitor your reaction to dapsone. Some people do have reactions.

I have just researched the iodine diet.  I am anxious to get going and will let you know how it goes.  Thank you again for you input.


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#6 Simone52

 
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Posted 22 July 2013 - 01:41 PM

I have just researched the iodine diet.  I am anxious to get going and will let you know how it goes.  Thank you again for you input.

Thanks again, Pricklypear!  I am not going to try the Dapsone yet at all.  I am allergic to sulfa and that's why I am nervous.  The doctor just said to try it and if I react badly to stop.  I don't like that option.  So, again, I will try the low iodine diet.  Question about that: is all salt out?  Or just iodized table salt?  What about Kosher or Sea Salt?  


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#7 pricklypear1971

 
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Posted 22 July 2013 - 02:30 PM

Thanks again, Pricklypear! I am not going to try the Dapsone yet at all. I am allergic to sulfa and that's why I am nervous. The doctor just said to try it and if I react badly to stop. I don't like that option. So, again, I will try the low iodine diet. Question about that: is all salt out? Or just iodized table salt? What about Kosher or Sea Salt?


Non iodized salt is fine. Iodized salt is out. Read the box and see if they add it.

Some people are fine with sea salt, others not. Most sea salt is low in iodine...but I think it depends on where they source it. Some sea salts put the trace mineral content on the box, like Real Salt (which is low).

Be careful if salty processed foods like chips. I believe squirmingitch has done lots of calling about iodized/no iodized chips...pm her? I just didn't eat them since it was potato+salt...and potatoes got me more than other foods for a longer time...
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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!

#8 Simone52

 
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Posted 22 July 2013 - 04:06 PM

Non iodized salt is fine. Iodized salt is out. Read the box and see if they add it.

Some people are fine with sea salt, others not. Most sea salt is low in iodine...but I think it depends on where they source it. Some sea salts put the trace mineral content on the box, like Real Salt (which is low).

Be careful if salty processed foods like chips. I believe squirmingitch has done lots of calling about iodized/no iodized chips...pm her? I just didn't eat them since it was potato+salt...and potatoes got me more than other foods for a longer time...

Okay.  I ordered the low iodine cookbook and tomorrow will go to the grocery to begin.  I can do this for a few weeks.  Fingers crossed for me!  Too bad about the chips but at least I can still have my wine!! :P  I will let you know how it goes.  How long did it take before you felt results?  This itch is unbelievable.


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#9 pricklypear1971

 
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Posted 22 July 2013 - 05:47 PM

Oh, you don't have to order it! They provide it free, online, as far as I know. http://www.thyca.org.../lowiodinediet/

I saw results with a few days, BUT THAT WAS JUST ME. I would say any improvement is a good sign.
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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!

#10 Simone52

 
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Posted 23 July 2013 - 04:20 AM

Oh, you don't have to order it! They provide it free, online, as far as I know. http://www.thyca.org.../lowiodinediet/

I saw results with a few days, BUT THAT WAS JUST ME. I would say any improvement is a good sign.

well, I understand we are all different.  I know there are sure no guarantees with anything.  I am hoping for the best.  If it doesn't help me I will buy a big bag of potato chips and start the Dapsone.  Thanks again for all your encouragement.


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#11 squirmingitch

 
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Posted 23 July 2013 - 01:01 PM

All the Frito Lay products safe for us to eat do not use iodized salt or sea salt unless it says sea salt on it. I only eat the ones from the lines that are batch tested.  Lay's original potato chips are okay. so eat up Simone!


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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.

 


#12 Simone52

 
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Posted 23 July 2013 - 03:41 PM

All the Frito Lay products safe for us to eat do not use iodized salt or sea salt unless it says sea salt on it. I only eat the ones from the lines that are batch tested.  Lay's original potato chips are okay. so eat up Simone!

Oh, well this makes me happy! I went to Whole Foods today and loaded up! Tons of veggies (no spinach, no kale), fruit, almond milk!  This will be an adventure.  If there are no results within two week, I will go ahead with the Dapsone (maybe).  Thank you again for all of your support and advice. Honestly, this rash is full-time job.  Wish me luck!


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#13 squirmingitch

 
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Posted 23 July 2013 - 05:47 PM

Check that Almond milk for carageenan!


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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.

 


#14 sisterlynr

 
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Posted 24 July 2013 - 02:42 AM

I have suffered the horrible affects of celiac disease my entire life.  I was misdiagnosed until I was forty.  I had the severe intestinal issues and subsequent secondary autoimmune connective tissue disease.  A strict gluten-free diet has been a blessing.  Here is my question: is it possible to develop DH having been so strictly gluten free for so many years?  I have no other symptoms except a horrible, itchy-beyond-belief rash which travels around my body and waxes and wanes.  This began in mid-May of this year.  I have been taking Allegra 180, Tagamet and using topical steroid cream along with Benedryl.  The rash began on my scalp and back.  It has shown up on my thigh, ankle and left shoulder and breast.  As I said, it cycles.  It begins with a kind of tingling and then a small reddish mark which then turns into small pustules which have a wicked, evil itch! This last about 5 days and then scabs over.  I have one or two days of relief until the cycle begins again in another part of my body.

 

The first dermatologist misdiagnosed me with folliculitis.  I reacted with huge hives from the Septra.  The next dermatologist gave me a shot of cortisol which did nothing.  I have had a skin biopsy.  The path report is negative for DH but says "severe skin reaction and hypersensitive skin".  The doctor said that given my history of celiac, he wants me to take Dapsone. 50mg.  I am wary of this having reacted to the Septra and I don't understand how I could have this rash from hell lasting this long as I am truly very strictly gluten free. Even if I had an accidental ingestion I would think that after 2+ months I would improve.  

 

I have researched all of my hair and body products and removed anything that could have gluten in them.  Still the rash prevails. Should I try the Dapsone?  The doc said it is a good diagnostic tool for DH. Any advice and/or suggestions would be greatly appreciated.

 

 

Dapsone evidently works tremendously for some people.  It is a Sulfa related drug so you would need to check that out.  I am not responding to it but I faintly remember that I couldn't take Sulfa when I was younger for an infection. 

 

My specialist(s) that have patients on Dapsone tell me the rash does go away with DH patients.  I have had such a trying time with this rash that I have asked each of them about other patient responses.  That includes my PCP, Dermatologist and Rheumatologist and each of them tell me their patients are on much higher doses than the .75 mg I was taking.  I did not have negative blood test while taking Dapsone, my rash just didn't clear or go away.

 

You are seeing lots of responses regarding your question but I don't think they are from people that have actually taken Dapsone.  I addressed the issue of Dapsone on a thread, with only 3 people responding and actually one responded to my private e-mail.  I was tired of people telling me what they thought or had read . . . I wanted answers from someone that actually took the medicine. The people that responded to me had taken the drug ;  1) for 20 years   2) for 7 years  3) for 2 years

 

So, that's my response regarding Dapsone.  It didn't clear my rash but have doctors telling me it does work for others.  I guess you would have to be tested to see if you can take it and do a trial and error for yourself.  Good Luck!


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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~


#15 Simone52

 
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Posted 24 July 2013 - 11:19 AM

Dapsone evidently works tremendously for some people.  It is a Sulfa related drug so you would need to check that out.  I am not responding to it but I faintly remember that I couldn't take Sulfa when I was younger for an infection. 

 

My specialist(s) that have patients on Dapsone tell me the rash does go away with DH patients.  I have had such a trying time with this rash that I have asked each of them about other patient responses.  That includes my PCP, Dermatologist and Rheumatologist and each of them tell me their patients are on much higher doses than the .75 mg I was taking.  I did not have negative blood test while taking Dapsone, my rash just didn't clear or go away.

 

You are seeing lots of responses regarding your question but I don't think they are from people that have actually taken Dapsone.  I addressed the issue of Dapsone on a thread, with only 3 people responding and actually one responded to my private e-mail.  I was tired of people telling me what they thought or had read . . . I wanted answers from someone that actually took the medicine. The people that responded to me had taken the drug ;  1) for 20 years   2) for 7 years  3) for 2 years

 

So, that's my response regarding Dapsone.  It didn't clear my rash but have doctors telling me it does work for others.  I guess you would have to be tested to see if you can take it and do a trial and error for yourself.  Good Luck!

You poor, brave thing.... :( I am nervous about taking it because I had a bad reaction to Septra which is sulfa based.  The doctor told me to try it and if I reacted we would stop.  I am attempting the low-iodine diet first. You need a break.  I will say an extra prayer for you.  You have really had more than your fair share.  Good luck and thank you for responding to me, Lyn.


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