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Gluten-Free For 20 Years With Rash From Hell


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73 replies to this topic

#16 ItchyAbby

 
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Posted 24 July 2013 - 03:28 PM

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.


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Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


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#17 Simone52

 
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Posted 26 July 2013 - 06:19 AM

Check that Almond milk for carageenan!

Oh Shoot!


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#18 squirmingitch

 
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Posted 27 July 2013 - 09:39 AM

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.


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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.

 


#19 Simone52

 
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Posted 31 July 2013 - 08:07 AM

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.


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#20 Simone52

 
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Posted 02 August 2013 - 04:40 AM

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


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#21 squirmingitch

 
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Posted 02 August 2013 - 04:42 AM

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.


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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.

 


#22 Simone52

 
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Posted 02 August 2013 - 05:28 AM

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.  :unsure:


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#23 squirmingitch

 
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Posted 02 August 2013 - 06:40 AM

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:

http://www.celiac.co...ing-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.


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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.

 


#24 Simone52

 
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Posted 02 August 2013 - 07:28 AM

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:

http://www.celiac.co...ing-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!! :D   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??


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#25 squirmingitch

 
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Posted 02 August 2013 - 07:37 AM

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!


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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.

 


#26 Simone52

 
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Posted 02 August 2013 - 08:44 AM

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!

This site is my happy place!  


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#27 squirmingitch

 
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Posted 02 August 2013 - 09:06 AM

Simone, do you have a gluten-free household? If not then that's a possibility for cc. Eating out is always risky. On average, how many times per month do you eat out?

 

It would seem to me that for this to happen after 20 years; you would have had to have been getting cc'd for some time. But then I'm no expert. Maybe you've been clean so long that all it took was 1 episode of cc & instead of your gut reacting, it caused the antibodies to be deposited under your skin. I haven't read any med texts where they talk about a dh reaction after 20 yrs. gluten-free. And I'm surmising here but I take it you always had GI reactions before & never had dh?????


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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.

 


#28 Simone52

 
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Posted 02 August 2013 - 02:34 PM

Simone, do you have a gluten-free household? If not then that's a possibility for cc. Eating out is always risky. On average, how many times per month do you eat out?

 

It would seem to me that for this to happen after 20 years; you would have had to have been getting cc'd for some time. But then I'm no expert. Maybe you've been clean so long that all it took was 1 episode of cc & instead of your gut reacting, it caused the antibodies to be deposited under your skin. I haven't read any med texts where they talk about a dh reaction after 20 yrs. gluten-free. And I'm surmising here but I take it you always had GI reactions before & never had dh?????

Hi Squirmy (may I call you that?)

 

Let me give a (hopefully) quick synopsis.  Because this is truly a mystery.  

 

I was born in 1952.  According to my mother I had severe digestion problems from the moment I began solid food.  She actually saved all of my records and I saw that at age 3 months the pediatrician was writing "try kaopectate"  My mother said I never had a normal diaper.

 

Remember, this is the 50's.  No one could figure it out.  By the time I was around eight, I had had a berium enema, multiple trips to the doctor and to no avail.  The original diagnosis (age about 8) was that I lacked an enzyme for digestion.  I became so used to the pain and horrible diarrhea, it was "normal" to me.  As a teen I was diagnosed with "irritable bowel". The doctor prescribed Valium. Nothing helped.  Then checked for Crohn's. Inflammatory bowel. Lactose Intolerant was the diagnosis in my late 20's. As an aside, my father suffered in much the same way.  As did my aunt.

 

By this time I was grossly underweight. At age 28 I developed an "unspecified connective tissue disease".  Mis-diagnosed with RA. I was virtually crippled.  The doctor kept saying to me that I had to gain weight.  So I ate tons of bread, pasta , pies and pastries.  And got sicker and sicker.  

 

At this time I began to research diets for various illnesses, specifically various kinds of connective tissue diseases.  I gave up sugar.  Completely.  And processed foods.  I ate whole grain breads, wheat germ, any "healthy" food without white sugar.  No sodas.  I waited for my soft tissue problems to go away while I wasted away and never ever was far from a bathroom.  I was very good, by the way, at hiding this.  My husband never understood why I didn't like to travel.  Airport bathrooms and plane rides were my nightmare. 

 

My teeth, bones, nails were a disaster.  I had rashes, headaches.  You know the drill. But felt a little crazy.  I lived on Lomotil.

 

Okay, when I was about forty....I don't remember where I came across an article that caught my eye.  I began researching.  The description of Celiac Disease was me.  They could have just put my picture there.  I began my own gluten-free diet with a vengeance.  I love to cook, I am a health fanatic.  I did not, nor do I now, eat out a lot.  Back then.....never.  No one knew what it was.  I made an appointment with a GI guy and got my official diagnosis.  What a blessing!  After about 12 weeks of being gluten-free and feeling SO much better the doctor challenged me and I thought I was going to die!  Seriously.  NEVER, EVER again!!  It was very difficult back then to find gluten-free products.  I don't know if you know, but it is the Celiac Association who lobbied Congress for easy and clear labeling.

 

Okay, so I have rambled.  To answer your question, I am so terrified of ingesting gluten my house is 100% gluten-free.  As am I.

 

Also, my soft tissue problems are in remission.  Of course that was all secondary to Celiac.  Leaky-gut.  Auto-immune reaction.

 

Following this weird skin thing, I have researched all of my shampoos and body products.  My cleaning products as well.  Anything that contained anything evil was thrown away.  By the way, I have found that most companies are extremely accommodating. I receive answers via e-mail within a few days. I cannot figure this out.  

 

The first dermatologist threw my back a glance and said I had folliculitis.  He prescribed Septra and prednisone.  I have never reacted to Septra before but within a week was covered with hives.  Serious, dinner plate-sized hives and my tongue swelled up.  I got off all medication and the hives were gone.  I went to dermatologist #2 who gave me a shot of cortisol which did nothing.  My back, leg (just one), neck and ankle were covered.  I wanted to rip my skin off.  I went back to him and he said, "Because you have a history with Celiac, I am going to prescribe Dapsone."  I balked.  I was afraid after my experience with the Septra.  He said it was used as a diagnotic tool.  That didn't make sense as I have been gluten-free for so long and had been on steroids.  The biopsy was negative for DH. That's when I joined this Forum.  I learned about the low-iron diet.

 

(Question: isn't this the Celiac site that originally included the founder's name? (I can't remember it offhand))

 

The rash waxes and wanes.  Just when I think it is healing, another crop shows up on another part of my body.  I am not certain this is DH.  It's driving me crazy though.  And I have found some great people here I don't mind talking to.  My friends and family must be sick of it.  Not as sick as I am :angry:

 

So far, the rash is predominately on my scalp, neck, trunk, stomach breasts (fun!) and earlier on, thigh and ankle.  Not on arms or face.  I hope it stays that way. If there is any silver lining, that's it.

 

Even if I experienced some sort of cc (I think that since being gluten-free has become trendy, perhaps restaurants are not as diligent as they should be), I would think that after 3 months it would be gone.  I need Dr. House!

 

Please forgive the length of this.  It is nice to get it all out.  

 

So there it is, no sugar, gluten, eggs, tomatoes, oats, fish, anything with carageenan, dairy........I miss my plain, Greek yogurt.

 

I would send you a picture but I don't know how to download them from my phone to here.  

 

Thank you SO much!

 

xo

 

P.S.  my three children are all grown and live out of state.  My husband and I are separated.  No gluten in this household!


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#29 squirmingitch

 
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Posted 02 August 2013 - 03:39 PM

The biopsy would be negative for dh, having been gluten-free & on steroids. Even if you had not been gluten-free, the steroids will make the biopsy a total wash out.

 

I'm so sorry you went through  the celiac hell that you did throughout your life & starting at such an early age. I often think how lucky we are now to have the internet at our fingertips with all i'ts information, support groups & ability to order things online from virtually anywhere in this country or afar. I can't imagine trying to eat gluten-free before this or before the labeling we have today was in place. I did not have to go through that & for that I am thankful in the extreme!

 

To do photos, you can go to photobucket & create an account, load your photos onto it & then put the link here to the photos on photobucket. 

http://photobucket.com/

 

Simone, don't apologize for telling your story!!!!! It is a celiac story & we all benefit from the experiences of others. Someone may come along & read your story & from it, suspect or learn that celiac is what they have, and they can be on the road to healing. So share away!!!!!! :)  :)

 

Okay, so you couldn't have been cc'd at home. That only leaves eating out & it only takes once. It sounds like you had dh as a kid or at least as a young adult. This is just my personal opinion but I think once you've had it you will always be susceptible at the drop of a hat. DH is sensitive to the tiniest amount of gluten. You say the rash has persisted for 3 months. Well, I can tell you one thing ---- when they put you on the steroids that made it worse in the long run. So many of us have been down the steroid road. They usually work great & you are so happy to have the rash GO! But there's a price to pay. As soon as you go off the steroids the rash comes back with a VENGEANCE & makes you pay 100 times over for having thwarted it with the steroids. So I'm thinking this is what has prolonged your rash.

 

I'm with you sister on the dairy subject...... I adore dairy!!!!!!!!!!!!!!!!!!! I want my dairy!!!!!!!!!!!

 

It's possible you have some other kind of rash. There are many rashes experienced by celiacs. But you mention wanting to rip your skin off --- that's a pretty common usage of language when ppl talk about dh.

 

Oh yeh, I know about the rash being on the stomach & breasts --- try the nipples & inside the belly button --- now that's fun!

 

Hang in there hon, it sounds like you're slowly getting better. Those antibodies get deposited under the skin & it takes time for your body to get rid of them.

 

I wish I had more time but I have some business stuff to take care of that has to be done by tomorrow. I had better get to it so I can cross it off the to do list. :D

 

Why are you not eating tomatoes? They are not on the thyca.org list of high iodine foods.


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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.

 


#30 Simone52

 
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Posted 02 August 2013 - 04:37 PM

The biopsy would be negative for dh, having been gluten-free & on steroids. Even if you had not been gluten-free, the steroids will make the biopsy a total wash out.

 

I'm so sorry you went through  the celiac hell that you did throughout your life & starting at such an early age. I often think how lucky we are now to have the internet at our fingertips with all i'ts information, support groups & ability to order things online from virtually anywhere in this country or afar. I can't imagine trying to eat gluten-free before this or before the labeling we have today was in place. I did not have to go through that & for that I am thankful in the extreme!

 

To do photos, you can go to photobucket & create an account, load your photos onto it & then put the link here to the photos on photobucket. 

http://photobucket.com/

 

Simone, don't apologize for telling your story!!!!! It is a celiac story & we all benefit from the experiences of others. Someone may come along & read your story & from it, suspect or learn that celiac is what they have, and they can be on the road to healing. So share away!!!!!! :)  :)

 

Okay, so you couldn't have been cc'd at home. That only leaves eating out & it only takes once. It sounds like you had dh as a kid or at least as a young adult. This is just my personal opinion but I think once you've had it you will always be susceptible at the drop of a hat. DH is sensitive to the tiniest amount of gluten. You say the rash has persisted for 3 months. Well, I can tell you one thing ---- when they put you on the steroids that made it worse in the long run. So many of us have been down the steroid road. They usually work great & you are so happy to have the rash GO! But there's a price to pay. As soon as you go off the steroids the rash comes back with a VENGEANCE & makes you pay 100 times over for having thwarted it with the steroids. So I'm thinking this is what has prolonged your rash.

 

I'm with you sister on the dairy subject...... I adore dairy!!!!!!!!!!!!!!!!!!! I want my dairy!!!!!!!!!!!

 

It's possible you have some other kind of rash. There are many rashes experienced by celiacs. But you mention wanting to rip your skin off --- that's a pretty common usage of language when ppl talk about dh.

 

Oh yeh, I know about the rash being on the stomach & breasts --- try the nipples & inside the belly button --- now that's fun!

 

Hang in there hon, it sounds like you're slowly getting better. Those antibodies get deposited under the skin & it takes time for your body to get rid of them.

 

I wish I had more time but I have some business stuff to take care of that has to be done by tomorrow. I had better get to it so I can cross it off the to do list. :D

 

Why are you not eating tomatoes? They are not on the thyca.org list of high iodine foods.

You are my sister!!  No tomatoes because I was thinking that if it isn't DH it could be a reaction to something else (we are all delicate flowers, after all!)  So I am trying a serious elimination diet!  

 

I miss my dairy... I miss my BLT's.....I miss  my tuna salad!  But I am determined. 

 

I called the suicide scratch.  Then got onto this site and found I wasn't alone.

 

Gluten is evil!!

 

xo


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