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Can We Talk About Iodine?


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#16 pricklypear1971

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Posted 07 January 2014 - 09:55 PM

You should probably read the thyca.org low iodine guidelines. The guidelines are for people undergoing thyroid radiation therapy, who must follow a two week low iodine diet. The guidelines are pretty good.

http://www.thyca.org.../lowiodinediet/

The silk milk contains sea salt - which will have varying degrees of iodine. You may call to ensure it isn't iodized sea salt.

Your iodine tolerance will vary from ours. I probably could have drank it. Squirmy probably wouldn't have :). I just dropped milk and milk subs since the only thing I wanted it for was half n half...for my coffee....which I just dropped for two weeks and hated the world.

Oh, and egg yolks. If you buy egg whites read the labels carefully. There were only two brands I found that weren't full of crap (iodine, or couldn't verify gluten-free) - one was Trader Joe's and the other I don't remember.

FYI I first added back organic half n half (no carageenan), then a whole egg every other day. I turn white at the sight of egg whites, still.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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#17 squirmingitch

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Posted 08 January 2014 - 04:44 AM

Terrific! :)


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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.

 


#18 Blaze422

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Posted 08 January 2014 - 11:06 AM

Now you understand why I drink..Or at least why I drank..LOL

If you try to avoid dairy, it has carrageenan.
You try to avoid carrageenan and it has iodine.
You try to avoid iodine and it is high is salycylates.

I am getting better and am trying not to drive my wife nuts.
Fanatical about avoiding gluten in food, lotions, shampoos etc
Trying to be LI but it my understanding that 50 micrograms of iodine or less a day is ok and so if my eggs whites have trace iodine, I eat it... The sea salt in almond milk might be a problem..
My low SAL strategy is to try to be smart and avoid high sal items like my wine and coffee but not to be neurotic at this point.
No dairy. No alcohol.
Probiotics, MSM,food grade Diamatacious earh
Moisturize with coconut oil.
dapsone for 1 more month
You guys are great...thanks again!
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#19 ItchyAbby

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Posted 08 January 2014 - 12:11 PM

Hi Blaze - My favorite dairy sub has been coconut milk. I get the Arroy-D brand as it has nothing in it beside 100% coconut milk. No thickeners/gums/salt/preservatives. And it is thick and creamy and tastes so good in tea that I may never go back to dairy milk. (Ok, I probably will, but I will still love coconut milk)

 

I think it is normal to be a bit fanatical and neurotic in the beginning. You are learning a whole new food language! I also think the rash just makes us angsty - but maybe that's just me. When my rash flares, so does my anxiety. When the rash calms down, so does my anxiety. And so it goes, up and down, up and down, for a while. But it DOES get better, I promise. I am 7 months and some change in and am seeing and feeling much improvement.

 

Just try to keep it simple. Eat whole foods as it is nearly impossible to avoid iodine in packaged foods. (Bonus! No labels to read!). Use kosher salt for seasoning. Eat some of that coconut oil, too - it makes not being able to have butter bearable. Keep a food journal to help you target things that might be aggravating. Find a few good comfort dishes that you can make regularly (My two current favorites: shepherd's pie with sweet potatoes on top, and roasted chicken legs with crispy skin with a big salad and roasted sweet potatoes. I could eat either of these for days and be content. Sweet potatoes got me through this! Heh.). Like Prickly, I cannot stand the idea of egg whites - so, I just gave up on eggs for a while. I decided to have one whole egg today, just to test. We'll see how that goes. As you can see, there is a bit of trial and error. You will get better at it and become more aware of your body than you ever wanted to be! :lol:


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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.


#20 pricklypear1971

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Posted 08 January 2014 - 12:44 PM

Low sal and low iodine and gluten free made me a very irritable girl.

I DREAMED of shrimp. You could have tortured me with shrimp. First time I aye two and didn't itch I was high as a kite.

I am extremely thankful now that when I break out the rash is minuscule (it may cover some geography but the lesions are so tiny you'd think they're goosebumps) I don't have to do LI. I just lay off huge doses.....

I don't do low sal now. I was only good at that for a few weeks. Made me angry.... I did stay away from food colorings and added msg's....highly "fake" foods - even if gluten-free for a loooong time.

I still won't touch riceworx chips with a ten foot pole....

Oh - if you can - try Junior Mints!!! gluten-free, milk free and egg free??? Anyway I ate them like crack (til I became intolerant of fake mint flavoring, oops)...but they got me through some bad times.

I can't explain the mint thing - I can have fresh mint and some organic extracts and Bob's products but Junior Mints and Andes mints create a bathroom experience I won't repeat.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#21 Blaze422

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Posted 08 January 2014 - 01:07 PM

Itchy...I know there's an area for recipes but I have to share this with you. For New Years my wife made black eyed peas ( not sure the specifics) but I put it over a bed of sweet potato/apple mash.
You take an equal amount of pealed sweet potatoes and apples and after dicing them, add a little water and simmer medium heat ,covered for 20 minutes. Stir frequently. Lower temp and simmer another 20 minutes. Add ginger and cinnamon and then mash with potato masher.
awesome!
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#22 mendylou

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Posted 08 January 2014 - 02:43 PM

I can identify with all of you.  Ihave been gluten-free and as free of iodine as I can be for over 3 years.  I have had DH breakouts this entire time but they are not as severe as they used to be.  One thing I really miss eating is shrimp. I have not had any in over 3 yrs.  One of the first foods I want to eat once my skin clears is shrimp. I may pay the price at that time but I have to try it and see what happens.


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#23 squirmingitch

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Posted 08 January 2014 - 04:28 PM

Pardon my last post. I meant Terrific as a response to Blaze's saying he was going with Silk Almond milk -- no carrageenan.

 

Abby! Good for you!

 

Mendylou, I really feel for you @ 3yrs. ((((HUGS))))

 

Okay. Blaze, now I know you must be a southerner!!!!!! Blackeyed peas for New Years --- you just gotta be from the south or your wife is. I'm in Fl. but mom was from Bama.

I did low iodine, gluten-free, & low sal for 9 long months. It's a total bitch! No other way to put it. Let's see if I can remember my allowed foods for 9 interminable months:

Celery (still haven't wanted to get near the stuff since I don't HAVE to eat it now), deeply peeled potatoes, sweet potatoes, iceberg lettuce, chicken, beef, pork, egg whites, rice, saffron, cashew butter, instant decaf coffee, leeks, apples, green beans till they came out my ears, snow peas, sugar snap peas, cauliflower, zuchinni, yellow squash, white acre peas, black eyed peas, field peas, lemon, cashews, bananas. The end. That's it. That's all. Breakfast, lunch & dinner, 7 days a week, for nine months. Then we said screw the low sal thing & absolutely nothing happened that made our rash worse for eating sals. We were the same as if we had been low sal. But OH!!!!! we could eat SOOOOOOO many more things! It was as if an entire world opened up for us!!!!!! Food, glorious FOOD!!!!!

 

Blaze, is the Dapsone working for you? How much are you taking per day? And have you noticed a difference? Tell us please what is going on with your rash at this point & how that differs from when you first came on this board?

 

Another day of no itching for both hubs & I. I'm running my hands over my skin & it feels so soft & smooth & I haven't felt it like this for what seems like forever. Only my lower legs still have rough patches which are rapidly healing. After having itching somewhere on my body continually since 2010; to not itch is a bit odd feeling but it is exhilarating!!!!!!!! 


  • 1

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 pricklypear1971

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Posted 08 January 2014 - 05:41 PM

Pardon my last post. I meant Terrific as a response to Blaze's saying he was going with Silk Almond milk -- no carrageenan.

Abby! Good for you!

Mendylou, I really feel for you @ 3yrs. ((((HUGS))))

Okay. Blaze, now I know you must be a southerner!!!!!! Blackeyed peas for New Years --- you just gotta be from the south or your wife is. I'm in Fl. but mom was from Bama.
I did low iodine, gluten-free, & low sal for 9 long months. It's a total bitch! No other way to put it. Let's see if I can remember my allowed foods for 9 interminable months:
Celery (still haven't wanted to get near the stuff since I don't HAVE to eat it now), deeply peeled potatoes, sweet potatoes, iceberg lettuce, chicken, beef, pork, egg whites, rice, saffron, cashew butter, instant decaf coffee, leeks, apples, green beans till they came out my ears, snow peas, sugar snap peas, cauliflower, zuchinni, yellow squash, white acre peas, black eyed peas, field peas, lemon, cashews, bananas. The end. That's it. That's all. Breakfast, lunch & dinner, 7 days a week, for nine months. Then we said screw the low sal thing & absolutely nothing happened that made our rash worse for eating sals. We were the same as if we had been low sal. But OH!!!!! we could eat SOOOOOOO many more things! It was as if an entire world opened up for us!!!!!! Food, glorious FOOD!!!!!

Blaze, is the Dapsone working for you? How much are you taking per day? And have you noticed a difference? Tell us please what is going on with your rash at this point & how that differs from when you first came on this board?

Another day of no itching for both hubs & I. I'm running my hands over my skin & it feels so soft & smooth & I haven't felt it like this for what seems like forever. Only my lower legs still have rough patches which are rapidly healing. After having itching somewhere on my body continually since 2010; to not itch is a bit odd feeling but it is exhilarating!!!!!!!!


Clear, painless skin is exhilarating. It's amazing how it just disappears.
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#25 squirmingitch

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Posted 08 January 2014 - 06:56 PM

Amen! :D


  • 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.

 


#26 Blaze422

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Posted 09 January 2014 - 05:05 AM

Quick recap..
I used steroid creams so negative biopsy for DH May or not be accurate.
Migrating rash that was bilateral, non responsive to steroids and reactive to iodine. back, chest, arms, elbows, not in folds etc...and although my wife said it was exzema..I am convinced its not.
Itch however, only 4 on a scale of 10

Dapsone significantly decrease itchiness but has no taken it away.
Most of rashes as gone except low back and neck hairline. I no longer have to take 1/2 doses of antihistamines to get thru the day.
After.one month of dapsone (25 mgs every 6 hrs) I went off it and almost immediately started getting itchy and rashy again. Back on for another month with return to better skin.
That said, my dermatologist was disappointed that the dapsone hasn't been more effective. For that reason, the jury is still out on whether I have DH. My healing might be because of my diet, or might also be from dapsone.
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#27 pricklypear1971

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Posted 09 January 2014 - 06:18 AM

When I first read about dh there was an article about dh and iodine on a reputable Celiac site.... The man had been gluten-free and on dapsone for a year, and had to lower /monitor iodine as well or he'd break out. So, I think your doctor is slightly ill informed on the nuances of dh.

I wish i had a link to that for you but I don't....

Anyway, the iodine is VERY telling. You don't have an iodine allergy (you would have known that already from what I've read). I searched everywhere and asked several doctors, point-blank, to tell me WHAT OTHER RASH RESPONDS TO IODINE. I never had another rash named.

There are a few things you must consider that is difficult in the beginning. It takes practice to be gluten-free. Really, it does. So, you were probably getting some gluten in the beginning, and some are extremely sensitive to gluten causing a dh flare. Second, a low iodine diet has individual nuances...you may or may not have figured out your big triggers. Took me a while to pick up carageenan was a mega trigger, NOT dairy. And they put the damn stuff in everything, not just dairy.

This is a process. I know you're in pain and your life is this hackneyed mess of oddball foods and trying to live through the rash....but the clouds will clear and you'll get there.

As far as the itch goes....mine was not always miserably itchy. A tiny bit of steroid cream (and I mean tiny) kept the itch and gross weeping waaaay down. So, that could just be you or your itch tolerance is better than others. And, you're on dapsone...so less itch may be (luckily) a side effect.

Btw, my rash would not fully heal til I got off steroid creams. Strange but true.

What doctors really know about dh is minuscule. Seriously. If you think celiac knowledge is lacking, well, dh knowledge is criminally low. Doctors have NO idea of the nuances of dh.

I know it's hard to keep going when doctors doubt you. But just do what works....and in the end you'll probably figure it out and settle it in your mind. If staying gluten-free gets rid of a blistering rash that responds to dapsone and iodine and your doctor doesn't want to call it dh then fine. Let him give it a new name and screw off. You do what you need to do to be healthy.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#28 Blaze422

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Posted 09 January 2014 - 07:23 AM

Actually, in defense of my dermatologist , she is very open minded. After being confident of her initial diagnosis of exzema, when I returned 10 days later with beet red elbows, I said that I know she thinks this is exzema...but I'm thinking....and she completed my thought by saying...Dermatijts herpetaformis. I said thank you jesus!

She confesses limited experience with DH...is humble and said that anything is possible. The fact that I began the process with less severe itching than her other DH patients is consistent with the fact that everyone is different etc. bottom line is that avoiding gluten is a good thing from her perspective regardless if it is exzema or DH .
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#29 pricklypear1971

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Posted 09 January 2014 - 07:35 AM

Actually, in defense of my dermatologist , she is very open minded. After being confident of her initial diagnosis of exzema, when I returned 10 days later with beet red elbows, I said that I know she thinks this is exzema...but I'm thinking....and she completed my thought by saying...Dermatijts herpetaformis. I said thank you jesus!

She confesses limited experience with DH...is humble and said that anything is possible. The fact that I began the process with less severe itching than her other DH patients is consistent with the fact that everyone is different etc. bottom line is that avoiding gluten is a good thing from her perspective regardless if it is exzema or DH .

I understand your point and had a similar experience with my derm. He suspected dh but when I couldn't cite food reactions he put it aside. He did tell me it was autoimmune (without a doubt), and I would only resolve it by getting to the root of the autoimmunity. When I told him I was going to see an nd who specialized in autoimmune/thyroid because nd's are supposed to work with long-term management better than md's he was supportive. When I called back and told him it was (apparently) gluten and iodine and this dh he agreed 100%.

I will also say he gave me a boatload of steroid creams, two shots if steroids, a psychiatric grade antihistamine, and a bottle of prednisone - a valiant effort to help me but dude fried my already damaged adrenals. :) but hey, I was covered in rash and insane and he was trying to help. Always returned phone calls, always called personally, always worked me in. I love that man because he gave me the support to figure it out instead of telling me I was nuts.

BUT he also was/is painfully uninformed (and he's very experienced) about how dh can present without gi symptoms (though he does know how to successfully biopsy it). And THAT would have made all the difference.

So, give it time. If she's open minded she'll eventually get it. And so will you. I know it's easy to doubt when no one else will validate it. But in time it WILL be obvious.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#30 squirmingitch

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Posted 09 January 2014 - 10:12 AM

I second that emotion.


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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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