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Gluten-Free For 20 Years With Rash From Hell


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73 replies to this topic

#31 squirmingitch

 
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Posted 02 August 2013 - 05:42 PM

Oh, okay, I understand now about no tomatoes. I miss my cheese, cheese, cheese!!! And I miss sour cream on baked potatoes & sour cream dollop on black bean soup & cheese toast & cheese in tossed salads & yogurt & MILK & I'd kill for an egg yolk all runny & chicken parmigiana with Parmesan cheese instead of hold the cheese. I miss cream cheese & cottage cheese & ice cream. And more!

 

The suicidal itch ~~~ I know it well. I came close to being one of the statistics.

 

Still haven't gotten my work done. I seem to be practicing avoidance behavior tonight. After all, all work & no play makes me dull.  :lol:  :lol:  :lol:


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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.

 


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#32 Simone52

 
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Posted 03 August 2013 - 11:02 AM

Oh, okay, I understand now about no tomatoes. I miss my cheese, cheese, cheese!!! And I miss sour cream on baked potatoes & sour cream dollop on black bean soup & cheese toast & cheese in tossed salads & yogurt & MILK & I'd kill for an egg yolk all runny & chicken parmigiana with Parmesan cheese instead of hold the cheese. I miss cream cheese & cottage cheese & ice cream. And more!

 

The suicidal itch ~~~ I know it well. I came close to being one of the statistics.

 

Still haven't gotten my work done. I seem to be practicing avoidance behavior tonight. After all, all work & no play makes me dull.  :lol:  :lol:  :lol:

Okay, so I have a couple of questions you can answer or not.  Some may be none of my business.

 

How long have you been doing the low-iodine?  Have you noticed any improvement or change at all?

 

You're "working".  And at night.  What do you do. (that's a none-of-my-business question ;) )

 

Have you ever had a gluten-eating dream?  You know, where you take a bite of or eat some forbidden food? When you realize it you can't remember if you are celiac or not.  Or else you eat that cinnamon raisin toast (in your dream still) and totally freak out?  

 

And lastly, not a question.  YOU HAD TO GO THERE :lol: Describing all of the things we CAN'T HAVE!!

 

Okay, my turn. I miss Eggs Benedict on an English Muffin.  How about Challah bread slathered in sweet butter!? Pasta with parmesan.  Real cream in my coffee.  A croissant. PIZZA!!  With double cheese!! Mozzarella cheese with a homegrown tomato.  Or how about this:  Bacon and Eggs :D 

 

Thank goodness I can still have my red wine :P  That's where I draw the line!

Kidding aside, the interesting thing about this is how we have learned that simple pleasures

really are the best.  Now we need to create new simple pleasures. I am slow-cooking a lamb

shank right now with vegetables, herbs and red wine.  It smells divine.  A simple pleasure

I can have!

 

xo


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#33 squirmingitch

 
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Posted 03 August 2013 - 11:52 AM

I have been doing low iodine since.... well, I did it off & on for about the first 3 or 4 months & then I went low iodine & have stayed low iodine.... so say, since March of 2012 maybe May of that year. I do get my thyroid checked regularly though to make sure I'm still okay.

I keep thinking that if I could just have 1 week clear then I would test iodine again. Sigh.

 

Not working for money/job but working taking care of regular life crap. We moved & have bought a house in our new location --- we are trying to sell the old house that is 400 miles away. It takes work to keep things running at a house you don't live in anymore. Last night I had to provide a lot of info. to the appraiser we hired to appraise the house so we can get it SOLD.

 

I've only had 1 gluten eating dream where I picked up something (????) that was gluten & began eating it just plain out of habit of a lifetime of eating things w/o thinking about it first. All of a sudden I realized it was a gluten thing & FREAKED out!!!!!! Then I woke up. My hubs has had 1 similar dream.

 

Oddly enough I don't miss gluten stuff. I walk past the fresh donuts in the store & zero, zip, zilch, nada --- doesn't affect me. If anything it turns me off; I don't get sick to my stomach for real but I get sick to my stomach in my head if you know what I'm saying. Don't miss pizza, don't miss croissants, nor cake, nor cookies. I don't miss gluten stuff. I DO miss being able to eat quick & not worrying when you are away from home. That's a PITA! I'm sick of planning every meal. I miss the convenience of some foods.

 

Hey, I've been missing homegrown tomatoes for years & years & years. I'm sick of eating "plastic" tomatoes. I may have to try my hand at a fall/winter crop of maters this year. I'm in the far south & it's too hot to grow maters here in summer.

 

How about bacon. eggs, & hominy grits? I can't find any gluten-free hominy grits.

 

I bet that lamb smells divine! We had pot roast last night. Yum.


  • 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.

 


#34 squirmingitch

 
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Posted 03 August 2013 - 11:57 AM

I have to amend my statement. 

 

I miss Chinese food. 


  • 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.

 


#35 Simone52

 
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Posted 03 August 2013 - 01:42 PM

I have to amend my statement. 

 

I miss Chinese food. 

:D Oohhhhhh  yeah!  Chinese.  BTW  Rudi's makes a decent Pita now.

 

How far South?  My daughter is in Dallas.  She loves it.


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#36 squirmingitch

 
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Posted 03 August 2013 - 03:56 PM

North Central Florida. We used to live in (grew up in Jupiter) southeastern coastal Fl. We sorta went from 1 end of the state to the other.

 

The Chinese we liked to eat out at, do take out or have delivered & the leftovers we threw in the freezer so we always had quick, nuke it & eat meals for when we were late getting home from somewhere.

 

I've been waiting for Rudi's pitas to appear at our store.


  • 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.

 


#37 Simone52

 
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Posted 04 August 2013 - 02:10 PM

North Central Florida. We used to live in (grew up in Jupiter) southeastern coastal Fl. We sorta went from 1 end of the state to the other.

 

The Chinese we liked to eat out at, do take out or have delivered & the leftovers we threw in the freezer so we always had quick, nuke it & eat meals for when we were late getting home from somewhere.

 

I've been waiting for Rudi's pitas to appear at our store.

oops..I meant Tortillas.  Still....pretty decent.  But since I can't have any of the filling :( .....

 

I am SO tired of this evil, evil rash.

 

Using apple cider vinegar now in addition to everything else.

 

I really don't want to resort to the Dapsone.  But I'm getting desperate.  Seeing my PCP Wednesday.  I'm sure she will run more tests.  CBC.  Anything we should check? Re the blood work? Back to the dermatologist mid-August.


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#38 squirmingitch

 
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Posted 04 August 2013 - 05:43 PM

If you try Dapsone then get the pills, go back to your docs office, sit there & take the pill --- make sure they have an epi pen first! There is another alternative besides the sulfa drugs & that's tetracycline + niacinimide --- it's 4th down the line after Dapsone & other sulfa drugs. Of course, then you will kill all the good bacteria so may end up with yeast infection & gut problems from not having good gut flora. AND I haven't read anything that states how well it works or how long they keep you on it or CAN keep you on it.

 

I have now, at this stage of my rash, found that a nice soak in an Epsom salts bath helps to dry up the lesions, helps with the itching some & sloughs off the dead skin which is an extra irritant adding to the itching. You may cringe but I soak a while & then use an exfoliating cloth. It's been helping.

 

Oh tortillas. I keep looking. They would be nice even for a chicken or beef, lettuce & onion wrap. 

 

I can't imagine what else the doc should run.


  • 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.

 


#39 Simone52

 
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Posted 05 August 2013 - 04:40 PM

If you try Dapsone then get the pills, go back to your docs office, sit there & take the pill --- make sure they have an epi pen first! There is another alternative besides the sulfa drugs & that's tetracycline + niacinimide --- it's 4th down the line after Dapsone & other sulfa drugs. Of course, then you will kill all the good bacteria so may end up with yeast infection & gut problems from not having good gut flora. AND I haven't read anything that states how well it works or how long they keep you on it or CAN keep you on it.

 

I have now, at this stage of my rash, found that a nice soak in an Epsom salts bath helps to dry up the lesions, helps with the itching some & sloughs off the dead skin which is an extra irritant adding to the itching. You may cringe but I soak a while & then use an exfoliating cloth. It's been helping.

 

Oh tortillas. I keep looking. They would be nice even for a chicken or beef, lettuce & onion wrap. 

 

I can't imagine what else the doc should run.

Am I doing better, or am I getting used to it?  

 

I have been on a low-iodine diet for a week and a half.  I am still itching.  But it seems to be fewer and far between.  Or am I  simply adapting?  

 

Never mind water boarding. Just give terrorists DH with no help.  No scratching, no lotions, no help.  We'll win. No contest.

:lol:  :lol:


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#40 squirmingitch

 
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Posted 05 August 2013 - 05:52 PM

ROFLAO!!!! Yep, that's all we need to do with those terrorists. Better than sticks under the fingernails any day!!!!

 

No, I don't think you're adapting. You don't really adapt to this stuff --- at least I haven't. 

 

For me, when I get affected by iodine & then go low iodine; I seem to notice a difference in 3 days. For my hubs, it takes him 10 days. So once again, we are all different in how things affect us & for how long. Keep up the low iodine for a bit more & see what happens. Then, if you want, & if you dare, try iodine & see what happens. Yep, I can hear you; I know just what you're saying right now. :lol:  :lol:  :lol:


  • 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.

 


#41 Simone52

 
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Posted 06 August 2013 - 12:07 PM

ROFLAO!!!! Yep, that's all we need to do with those terrorists. Better than sticks under the fingernails any day!!!!

 

No, I don't think you're adapting. You don't really adapt to this stuff --- at least I haven't. 

 

For me, when I get affected by iodine & then go low iodine; I seem to notice a difference in 3 days. For my hubs, it takes him 10 days. So once again, we are all different in how things affect us & for how long. Keep up the low iodine for a bit more & see what happens. Then, if you want, & if you dare, try iodine & see what happens. Yep, I can hear you; I know just what you're saying right now. :lol:  :lol:  :lol:

Spooky!!! It's like........you're watching and listening to me!! :D Okay, what am I doing right NOW! :lol:

 

The doc I am seeing tomorrow is my PCP.  She hasn't seen me at all for this. I am going in armed with a diary of the

rash, the different meds I have been on and all of the various lotions, creams and emollients I have tried.  I am sure she

will run a bunch of tests.  I probably need thyroid and ANA.  Also hormone levels.  Is there anything in our lives that ISN'T affected by hormones or lack thereof?  Anything you could suggest would be appreciated.  We

already know I have celiac.  The question is whether this rash is DH or something else.  The only other symptom I have

noticed is mottled skin.  My whole body is slightly mottled. As I said, I am a delicate flower :P

 

I do think the rash is calming down.  I have been sleeping all night and the flares I get are lasting only a day or two instead of 3-7.  I am actually wearing some normal clothes.  I am not 100% and I don't want to get too specific about improvements because I don't want to jinx it.  If I improve substantially within a week or two I will definitely re-introduce some foods.  But not yet. And I'll certainly keep in touch.

 

How have you been feeling?  


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#42 squirmingitch

 
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Posted 06 August 2013 - 03:49 PM

I'm off to take a hot Epsom salts soak right now. Will get back to you later. I LOVE your sense of humor!!!!! :wub:  :wub:  :wub: Makes all the difference in the world at times like these. I say laughter is the very best medicine of all.

 

Pssssstttttt

All of us with dh do that same thing ---- shhhhhhh, we don't want to jinx it. Wish I had a nickle for every time I've said that.


  • 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.

 


#43 squirmingitch

 
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Posted 06 August 2013 - 05:18 PM

Does your PCP know you have celiac disease? Yes to the tests you mentioned. Also lipid panel & an in depth panel for your kidneys not just the usual run of the mill testing. Iron, vit D, B's & calcium. I'm not exactly great when it comes to recommending which tests for what. You might want to post over in the Post dx, recovery & treatments forum for their opinion. Here's a link:

http://www.celiac.co...verytreatments/

 

Mottled skin...... what color mottled? Come to think of it I used to get mottled skin, pink or red & white, but haven't had any since going gluten-free.

 

As to me, at the moment I'm depressed. Around 2 months ago I found Veganaise at our store & tried it. Oh GAAAAAAAAAAA! It tasted like honest to goodness real MAYO! Heaven, sheer heaven! It has soy protein in it but I figured it wouldn't be that much & surely I can tolerate soy now. It was so wonderful to have apple salad, potato salad (even minus the egg yolk), sausage & egg white sammich for breakfast once a week, & pears on a bed of lettuce with a dollop of mayo.on top & mayo on a burger. But I think it's clear now that the soy has to go. Damn!!!!! Getting those awful gut cramps & D. Not every day but enough to know somethings wrong.

If it sin't gluten it's iodine & if it isn't gluten & iodine then it's soy. Double damn!!!!! So It's going to be back to no mayo & no Glutino's pretzels either as they have soy. 

Gee, I think I just threw myself a pity party.

So I say to myself, "Self, slap your face & buck up! You can get through this." Maybe I'll just try some Hellman's Real Mayo & see if the egg yolks in it get me as far as iodine goes.


  • 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.

 


#44 Simone52

 
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Posted 06 August 2013 - 06:31 PM

Does your PCP know you have celiac disease? Yes to the tests you mentioned. Also lipid panel & an in depth panel for your kidneys not just the usual run of the mill testing. Iron, vit D, B's & calcium. I'm not exactly great when it comes to recommending which tests for what. You might want to post over in the Post dx, recovery & treatments forum for their opinion. Here's a link:

http://www.celiac.co...verytreatments/

 

Mottled skin...... what color mottled? Come to think of it I used to get mottled skin, pink or red & white, but haven't had any since going gluten-free.

 

As to me, at the moment I'm depressed. Around 2 months ago I found Veganaise at our store & tried it. Oh GAAAAAAAAAAA! It tasted like honest to goodness real MAYO! Heaven, sheer heaven! It has soy protein in it but I figured it wouldn't be that much & surely I can tolerate soy now. It was so wonderful to have apple salad, potato salad (even minus the egg yolk), sausage & egg white sammich for breakfast once a week, & pears on a bed of lettuce with a dollop of mayo.on top & mayo on a burger. But I think it's clear now that the soy has to go. Damn!!!!! Getting those awful gut cramps & D. Not every day but enough to know somethings wrong.

If it sin't gluten it's iodine & if it isn't gluten & iodine then it's soy. Double damn!!!!! So It's going to be back to no mayo & no Glutino's pretzels either as they have soy. 

Gee, I think I just threw myself a pity party.

So I say to myself, "Self, slap your face & buck up! You can get through this." Maybe I'll just try some Hellman's Real Mayo & see if the egg yolks in it get me as far as iodine goes.

 

Does your PCP know you have celiac disease? Yes to the tests you mentioned. Also lipid panel & an in depth panel for your kidneys not just the usual run of the mill testing. Iron, vit D, B's & calcium. I'm not exactly great when it comes to recommending which tests for what. You might want to post over in the Post dx, recovery & treatments forum for their opinion. Here's a link:

http://www.celiac.co...verytreatments/

 

Mottled skin...... what color mottled? Come to think of it I used to get mottled skin, pink or red & white, but haven't had any since going gluten-free.

 

As to me, at the moment I'm depressed. Around 2 months ago I found Veganaise at our store & tried it. Oh GAAAAAAAAAAA! It tasted like honest to goodness real MAYO! Heaven, sheer heaven! It has soy protein in it but I figured it wouldn't be that much & surely I can tolerate soy now. It was so wonderful to have apple salad, potato salad (even minus the egg yolk), sausage & egg white sammich for breakfast once a week, & pears on a bed of lettuce with a dollop of mayo.on top & mayo on a burger. But I think it's clear now that the soy has to go. Damn!!!!! Getting those awful gut cramps & D. Not every day but enough to know somethings wrong.

If it sin't gluten it's iodine & if it isn't gluten & iodine then it's soy. Double damn!!!!! So It's going to be back to no mayo & no Glutino's pretzels either as they have soy. 

Gee, I think I just threw myself a pity party.

So I say to myself, "Self, slap your face & buck up! You can get through this." Maybe I'll just try some Hellman's Real Mayo & see if the egg yolks in it get me as far as iodine goes.

okay, I'm going to try the Epsom bath!

 

Lord have mercy! Do NOT tell ANYONE I moved from Hellman's to anything with the word "vegan" in it!! But I have not done anything with soy in it for years.  Soy affects me as well.  Like you said, "if it's not this it's that..."

 

What I would do for a big ole' BLT!  I can handle Udi's or Rudi's or Schar's or Glutino bread!! That's fine. But now no Hellman's!!! :angry: Shoot!!

 

I swear....if they told me the world was ending tomorrow....the things I would eat would make you blush!!

 

Everyone in the Universe knows I have Celiac!  I think they are all sick of it!  Yes, my PCP knows.  Does she get it???Doubtful....

 

If they tell me I can't have my red wine, I'm shooting myself and anyone in my way :lol:  :lol:  :lol:  :lol:

 

Honestly, I am boring my own self with this.

 

Mottled skin.  Kind of purplish, pink.  All over. But I swear I have been gluten-free for years.  Even if I accidentally ingested anything........it's been since May.  This makes no sense.  AAAGHHHHHH

 

I'm with you at the Pity Party.  WooHoo!!!  Fun!!!

 

I'll let you know what doc says. 

 

Off to bed.

 

BTW...did I tell you how my acupuncturist gave me a concoction of herbs for my rash and how I woke up at 11:20 p.m. with my heart banging and my head throbbing????  Give me one of your balloons at our party :P  :P  :P

 

Jeesh........

 

 

 

 

 


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#45 ItchyAbby

 
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Posted 06 August 2013 - 07:55 PM

Hey you two, I found a recipe for soy free, egg free mayo: http://www.penniless...ecipe-flax.html

 

Did I mention that I am obsessed with making my own condiments? I've made ketchup (in the crockpot, honey sweetened, kosher salt) and horseradish (easy as pie, jsut don't stick your head over the food processor and take a big whiff when it's whirring - you'll be blind for a minute or two, if you do. A, uh, friend told me that...). I'm also making pickles and applesauce. Apparently my new full time job is feeding myself.


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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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