Gluten-Free For 20 Years With Rash From Hell

[Simone52]

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.

[pricklypear1971]

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.

[Simone52]

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.

[pricklypear1971]

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.

[Simone52]

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.

[Simone52]

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?  

[pricklypear1971]

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...

[Simone52]

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!!   I will let you know how it goes.  How long did it take before you felt results?  This itch is unbelievable.

[pricklypear1971]

Oh, you don't have to order it! They provide it free, online, as far as I know. Open Original Shared Link

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

[Simone52]

Oh, you don't have to order it! They provide it free, online, as far as I know. Open Original Shared Link

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.

[squirmingitch]

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!

[Simone52]

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!

[squirmingitch]

Check that Almond milk for carageenan!

[sisterlynr]

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!

[Simone52]

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.

[ItchyAbby]

Hi Simone!

I am also currently doing a low iodine diet, so if you want to share concerns and recipes, let me know. I have been pretty obsessive about my diet lately, trying to get to the bottom of this rash. The one thing I think has really helped is daily journaling - I write down EVERYTHING I eat, in great detail.

 

And like Prickly said, watch out for carageenan. It's seaweed based (high iodine) and in so many things, most especially milk alternatives, like your almond milk. (Also check your toothpaste) I have found that it is safer to just make everything myself, from single ingredients, so I know for sure what's going in my mouth. Almond milk is actually quite easy to make. Cashew Milk is even easier. I can tell you how if you'd like.

 

A couple of my favorite things to eat lately: sweet potatoes (peeled well) roasted in coconut oil sprinkled with kosher salt, bananas fried in coconut oil, dates with cashew butter, apples with almond butter and cinnamon. These are my "treats", the things that make me feel like I am not sacrificing too much. My meals consist of tons and tons of fresh veggies, either raw in salads or cooked simply (it's the best time of year for it!); fresh fruit; nuts and seeds; duck and chicken egg whites; and fresh, organic/pasture-raised/grass fed beef, lamb, pork and chicken. I am planning on doing this for a month, then slowly reintroducing iodine rich foods and some grains. It's actually been a fun culinary adventure (I like to cook). It was my choice to go pretty extreme with the elimination diet - I want to be able to carefully reintroduce things and closely observe any reaction.

[Simone52]

Check that Almond milk for carageenan!

Oh Shoot!

[squirmingitch]

You can make your own almond milk. I've never done it but plenty have. I'm sure they can tell you how in the recipe forum.

[Simone52]

Hi Simone!

I am also currently doing a low iodine diet, so if you want to share concerns and recipes, let me know. I have been pretty obsessive about my diet lately, trying to get to the bottom of this rash. The one thing I think has really helped is daily journaling - I write down EVERYTHING I eat, in great detail.

 

And like Prickly said, watch out for carageenan. It's seaweed based (high iodine) and in so many things, most especially milk alternatives, like your almond milk. (Also check your toothpaste) I have found that it is safer to just make everything myself, from single ingredients, so I know for sure what's going in my mouth. Almond milk is actually quite easy to make. Cashew Milk is even easier. I can tell you how if you'd like.

 

A couple of my favorite things to eat lately: sweet potatoes (peeled well) roasted in coconut oil sprinkled with kosher salt, bananas fried in coconut oil, dates with cashew butter, apples with almond butter and cinnamon. These are my "treats", the things that make me feel like I am not sacrificing too much. My meals consist of tons and tons of fresh veggies, either raw in salads or cooked simply (it's the best time of year for it!); fresh fruit; nuts and seeds; duck and chicken egg whites; and fresh, organic/pasture-raised/grass fed beef, lamb, pork and chicken. I am planning on doing this for a month, then slowly reintroducing iodine rich foods and some grains. It's actually been a fun culinary adventure (I like to cook). It was my choice to go pretty extreme with the elimination diet - I want to be able to carefully reintroduce things and closely observe any reaction.

Dear Itchy

 

You sound like my twin!  I am doing the same thing.  Only I have to confess I am even more obsessive about food.  I am doing a pretty restrictive elimination diet.  I am still not positive that this rash is gluten-related.  I have been so disciplined for about 20 years and I haven't been able to see a true DH rash.  Mine moves all over.  Waxes and wanes.  Begins with a prickling sensation.  As if a needle is pricking me. I am so afraid of the Dapsone as I really reacted to Septra which is sulfa based. The rash begins as a blotchy, reddened area and then progresses to small, raised red pustules. This all began last May on my head.  It has visited my head, neck, back, breasts (bra drives me insane), stomach, thigh and ankle.  It fades away then shows up in another spot. SO frustrating.

 

Like you, I also love to cook, rarely eat out and love getting creative.  I have been doing this for a week now, and find that I do feel better but I am not sure why.  Is it from low iodine? Or all of the other things I am off.  Eggs, dairy, tomatoes, all processed foods as well as everything on the low iodine forbidden list.  Additionally, I have changed all of my skin and hair products.  Nothing that contains SLS. I love Zum products.  The "frank incense & myrrh" soap products smell divine!

 

Well, something somewhere  is getting to me.  It's a mystery.  I would love to stay in touch with you and hear about any improvement. 

 

Thank you so much for the recipe ideas.  I make bone broth and sip it throughout the day.  About 4 quarts of water, 1-2 lbs of any kind of bones from grass-fed beef, (marrow bones, neck bones anything) 2 tablespoons apple cider vinegar and one whole head of garlic, peeled and smashed.  I use the slow-cooker for 24 hours.  It is supposed to be very healing.

 

I started to write everything down and then felt as if I was over obsessing.  But I think you are right and I will return to it.

 

 

I also have to say, that I am new to this site and didn't realize that there was more than one page of responses.  Discovering this today is great.  Thank you so much for you input.  Let's stay in touch.

[Simone52]

Does anyone know if Morton's Kosher salt is safe for a low-iodine diet?

[squirmingitch]

Kosher salt is not iodized. Anything Kosher does not contain iodized salt; it just contains plain salt. So Kosher things are safe for us who are watching iodine.

[Simone52]

Thanks!  I am trying so hard to remove anything iodized.  This is full-time job! I wish I could find a gluten-free bread without eggs or salt. Right now my diet is so restricted it's ridiculous!  Pretty soon I'll just eat air!  

 

On another note, I am new here and am loving it but I find that I can't remember where the articles were when I want to re-visit.  There was someone new who asked how long it would take before she (I think her name was WisconsinKim) would feel better.  Of course now I cannot find the thread.  Also, tips for relieving itch.  I lost that one as well.  Please bear with me.  It's all new to me.

 

Next question: can I eat new potatoes (peeled)?  I have read conflicting things about this.

 

Squirmingitch...you are the best!  So helpful.  

 

You would think after twenty years a flare-up such as this couldn't happen.  I still can't figure out where or why. 

[squirmingitch]

I eat Gutino's Genius bread --- no egg yolks, no dairy, salt is not iodized & none of the Glutino products use iodized salt. I buy it at my local grocery store. I have decided I will need to wait until I can have iodine before I make my own bread.

 

I wouldn't know where the thread is that the girl asked how long before she feels better.

 

Here's the link for the help with the itching:

https://www.celiac.com/forums/topic/96552-help-for-the-itching-stinging-burning-pain-of-dh/

 

Yep, it's an eye opener for sure how you got a flare like that after 20 years. I'm surely taking a lesson from that Simone! Ever vigilant for the rest of our lives.

[Simone52]

I eat Gutino's Genius bread --- no egg yolks, no dairy, salt is not iodized & none of the Glutino products use iodized salt. I buy it at my local grocery store. I have decided I will need to wait until I can have iodine before I make my own bread.

 

I wouldn't know where the thread is that the girl asked how long before she feels better.

 

Here's the link for the help with the itching:

https://www.celiac.com/forums/topic/96552-help-for-the-itching-stinging-burning-pain-of-dh/

 

Yep, it's an eye opener for sure how you got a flare like that after 20 years. I'm surely taking a lesson from that Simone! Ever vigilant for the rest of our lives.

Thanks AGAIN!!   I love Glutino products.  I have been eating Udi's but I am going back to Glutino.

 

I know it is a mystery.  The only thing I can think is some sort of CC from a restaurant.  Even so, why am I still itchy?  I'm pretty sure though that the flares are less intense now and leaving faster.  

 

I wonder if the fact that I was eating much more fish.  Salmon, tuna, Chilean bass plus taking a teaspoon full of cod liver oil daily. But I wouldn't think that would trigger a DH reaction.  I may never find out.

 

Peeled red potatoes??

[squirmingitch]

I forgot to answer about the potatoes. I would think as long as you peel them you will be fine but I double peel my potatoes just so I make sure I get good & past the skin.

 

I wouldn't think the salt water fish or cod liver oil would have make a difference at this point to trigger a reaction. 

 

I'm glad to hear the flares are tapering down in intensity & length of time. Good!