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Gluten-Free For 20 Years With Rash From Hell
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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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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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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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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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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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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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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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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.

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I have to amend my statement. 

 

I miss Chinese food. 

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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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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.

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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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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.

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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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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:

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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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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.

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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.com/gluten-free/forum/12-celiac-disease-post-diagnosis-recoverytreatments/

 

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.

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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.com/gluten-free/forum/12-celiac-disease-post-diagnosis-recoverytreatments/

 

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.com/gluten-free/forum/12-celiac-disease-post-diagnosis-recoverytreatments/

 

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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Hey you two, I found a recipe for soy free, egg free mayo: http://www.pennilessparenting.com/2013/03/homemade-vegan-mayonnaise-recipe-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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Hey you two, I found a recipe for soy free, egg free mayo: http://www.pennilessparenting.com/2013/03/homemade-vegan-mayonnaise-recipe-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.

I have the same job!! :P I also make my own ketchup.  Oh, homemade pickles are the best.  I hadn't thought about that.  I was thinking that it was the pickle itself that was iodized.  But I guess you're right. It would be the salt.  Shoot!  Why didn't I think of that.  There is another website out there I like to use.  I can't remember the name right now, but I'll get back to you.  I think it's something like Sugarfreegirl.  She has a sugar-free, soy-free, gltuen-free, vegan, corn-free, ketchup recipe that I LOVE! I just can't think of the name.  (I think I am going to start blaming my memory on gluten too!) And horseradish. Mmmmmm. I also found a site for gluten-free make-up.  Oh jeesh I am getting obsessive.  Speaking of that, there is another company that makes soaps. body products and cleaning products that are all good for us.  And the scent is unbelievably phenomenal.  I think I mentioned it somewhere already but it's worth repeating; the company is Indigo Wild and the products are called ZUM.  The scent I am obsessed with is Frankincense and Myrrh.  The laundry smells heavenly not to mention my own self.  I will get back to you about the name of that site as well. 

 

Well, I'm off to drink my black coffee, dried toast with apricot pure fruit spread.  

 

ItchyAbby: can you post the pickle recipe?

 

Okay, I found the sites:  www.spoonfulofsugarfree.com and www.indigowild.com.

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Thanks for the websites!

 

I am using the recipes out of Ball's Complete Book of Home Preserving - the essential canning book! I also have one called Food in jars, which focuses on small batch canning. I look for the lowest sugar recipes. The one I am going to try next out of Ball's is their Deli Dills (no sugar) which is really similar to this recipe: http://localkitchenblog.com/2009/07/14/garlicky-dill-pickles/

 

Next up, I have to make mustard. Oh how I've missed mustard.

 

As far as makeup, I use Alima. I used it even before I found out I was gluten sensitive. I just liked that it was really simple makeup, never feels heavy or cakey and makes my skin looks amaze-balls.  http://www.alimapure.com/

 

Now I want toast! I have not had toast in about a month! What brand have you found that is LI?

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Oh and cashew milk. I follow this recipe, but leave out the last four ingredients (flavorings), even though they sound delicious. I leave them out so it's as neutral as possible. That way it can be used in savory and sweet recipes and won't flavor my tea too much. (But man, I bet vanilla, maple syrup and cinnamon would be good! Maybe I will make one bath with them and have it as my nighttime drink)

http://cookieandkate.com/2013/cashew-milk-recipe/

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Oh and cashew milk. I follow this recipe, but leave out the last four ingredients (flavorings), even though they sound delicious. I leave them out so it's as neutral as possible. That way it can be used in savory and sweet recipes and won't flavor my tea too much. (But man, I bet vanilla, maple syrup and cinnamon would be good! Maybe I will make one bath with them and have it as my nighttime drink)

http://cookieandkate.com/2013/cashew-milk-recipe/

Toast...Squirmingitch recommended Glutino Genius.  Just egg whites and non-idodized salt.  I don't think it's as good as Udi's but toasted well it's pretty good.  

 

My rash seems to be really settling down.  I have the spot here and there.  I have been LI for about 2 weeks.  I will wait another week before I try anything.  I am off to my PCP in about 10 minutes.  This is the first she has heard of this with me.  And of course, I'd say I'm 90% better.  I still don't understand if this is DH what triggered it?  Too much iodine??  I'd never heard of such a thing before this.  Still, if it was a CC would I be so bad for so long after being totally gluten-free?  I may never know.  But I am not willing to add anything like dairy :(  back in yet.  Oh, for some parmesan :unsure: !!

 

 

 

BTW  the apple cider vinegar directly on rash applied with a cotton ball is the best I have found! 

 

Off to the doc.

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Thanks for the links both of you! I'm going to try that mayo. I had tried a few recipes before that were eggless & they sucked. :lol: But none used flax seed. I'll give it a whirl.

I like the Afterglow cosmetics --- totally gluten-free & not heavy or oily feeling. Before I knew I had celaic I quit using all makeup b/c my face got itchy & swollen every time I wore it. Now I know why! No more problems with the Afterglow.

 

I'm going to try the acv on the rash. I had tried white vinegar long ago but didn't think of the acv.

 

If you like Udi's bread better it will be fine. Only egg whites in it; no egg yolks. I've eaten it & been fine. Here's a link to the ingredients:

http://udisglutenfree.com/products/white-sandwich-bread/

 

and as far as that goes you can eat Rudi's. See ingredients:

http://www.rudisbakery.com/gluten-free/product/original/

 

Those are just for the white bread versions; you will have to check on the others. And I haven't had a problem with sea salt once I got the nerve up to try things that have sea salt in them.

 

This is a bun in a bowl bread -- quick & easy. It was posted in the recipe forum but in the brown rice/cocoa powder version. I tweaked it to be more like white bread for my hubs & so that recipe follows the orig.

 

A woman at our local support group told us about a low-carb "bread" that she makes in the microwave. I tried it and thought it was okay and started to experiment a little. This morning, I hit a really great recipe. My 15 yo DD, who is not gluten-free said it was good and asked for more. It reminded me of whole wheat bread - soft, yet grainy in a good way. I'm planning to make some more of these for sandwich buns.
 
Here's the recipe:
 
1 large egg (for low iodine use 2 egg whites & no egg yolk)
2 Tbs. brown rice flour (you can sub white rice flour or sweet white rice flour)
1 Tbs. almond meal (you can sub cashew meal)
1 Tbs. golden flax meal
1/2 tsp. baking powder
3/4 tsp. sugar
1/2 tsp. cocoa powder
shake of salt
 
Spray a custard dish (or any baking dish that will yield a hamburger bun sized "loaf") with non stick spray. Crack egg into dish and stir with a fork until it's well mixed. Add all other ingredients and stir well. Cook in microwave on high for 90 seconds. You'll have to loosen around the edges with a butter knife, but mine came out pretty easily.
 
I'm using some self-control to wait until lunch time to make another one and create a delicious turkey sandwich. (insert drool icon) 
 
 
 
WHITE BREAD VERSION OF BUN IN A BOWL:
 
1 large egg (for low iodine use 2 large egg whites & no egg yolk)
2 Tblsp. White rice flour or sweet white rice flour
1 Tblsp. cashew meal (flour) if not sensitive to salicylates you can use almond meal (flour)
1 1/3 Tblsp. Golden Flax Meal
1/2 tsp. baking powder
1 tsp. sugar
shake of salt
 
Spray a custard dish (or any baking dish that will yield a hamburger bun sized "loaf") with non stick spray. Crack egg into dish and stir with a fork until it's well mixed. Add all other ingredients and stir well. Cook in microwave on high for 90 seconds. You'll have to loosen around the edges with a butter knife, but mine came out pretty easily.
 
 
And here's a Paleo Banana bread recipe --- you can sub ingredients for sensitivities:
 
Paleo Banana Bread
 
 
Print
Prep time
10 mins
Cook time
60 mins
Total time
1 hour 10 mins
 
Serves: 8
Ingredients
4 bananas, yellow (they do not need to be overly ripe but you can if you want)
4 eggs
1/2 cup almond butter (or any nut butter, i.e. macadamia, pecan, etc)
4 tablespoons grass-fed butter, melted (can substitute coconut oil)
1/2 cup coconut flour
1 tablespoon cinnamon
1 teaspoon baking soda
1 teaspoon baking powder
1 teaspoon vanilla
pinch of sea salt
Instructions
Preheat your oven to 350 degrees fahrenheit
Combine your bananas, eggs, and nut butter, and grass-fed butter in a blendtec, blender, food processor, or mixing bowl and mix well (if using a mixing bowl you need a good hand-mixer)
Once all of your ingredients are blended, add in your coconut flour, cinnamon, baking soda, baking powder, vanilla, and sea salt and mix well
Grease a 9×5 glass (see notes) loaf pan with a fat of your choice (I used grass-fed butter). If you use a metal pan it will probably bake in 45 minutes
Pour in your batter and spread it evenly throughout
Place in your preheated oven and bake for 55-60 minutes or until a toothpick inserted into the center comes out clean
Remove from oven and flip your bread out onto a cooling rack
Slice and serve
Variations
Cranberry Orange – Only use 3 tablespoons of butter. Add zest of one whole orange diced, juice of one whole orange, and1 cup dried cranberries or fresh if you want
Chocolate Blueberry – Add 1 cup of fresh blueberries and ½ cup of cocoa powder
Pumpkin Pecan – Reduce the almond butter to ¼ cup and add ½ cup of pumpkin puree and 1 cup of roughly chopped pecan pieces
Notes
 
 
 If you want to make these into muffins, use the same recipe and for mini muffins bake approximately 25 mins and normal size muffins 30-35 minutes.
 
And this is 1 I came up with for Belgian Waffles. If you tweak it & make it better LMK so I can too please.
 
Here is the Belgian waffle recipe:
 
1 1/3 cups of Bisquick gluten-free pancake & baking mix 
1 1/4 cups of milk
3 Tblsp. of canola oil (or oil of your choice)
2 eggs, separated (for the egg yolks I sub chia seed)
1 tsp. vanilla extract
2 Tblsp. sugar
 
Put the Bisquick pancake mix in 1 bowl. In a second bowl use a wooden spoon to beat together the egg yolks & sugar until sugar is completely dissolved & eggs have turned a pale yellow. Add the vanilla extract, milk & oil to the egg yolk mixture & whisk or mix well. Combine the egg-milk mixture with the Bisquick & whisk until blended. In a third bowl, beat the egg whites with an electric mixer until soft peaks form, about 1 minute. Using a rubber spatula, gently fold the egg whites into the waffle batter. Do not over mix! Pour the batter into prepared waffle maker.
You can also mash a ripe banana & add it to the mixture before folding in the egg whites. It will make the waffles a little heavier & you will need to cook them slightly longer but they are delicious!
 
I came up with this recipe by combing the regular waffle recipe on the Bisquick box with a Classic Belgian Waffle recipe by Emeril Lagasse.
 
Gotta run do some real estate stuff for our realtor.
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