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      Frequently Asked Questions About Celiac Disease   09/30/2015

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Blaze422

Can We Talk About Iodine?

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As my rashes are slowly going away ( diet and dapsone ) one of the reasons I am pretty sure I have DH is that itching increases with salty foods.

I understand that gluten will cause antibody production and the longer I stay off gluten, then less reactive ..(ie..less antinbodiy prduction) will result from accidental ingestion of gluten.

Does iodine cause a "relapse" in the healing process... Or is it only temporary increase in itchiness?

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For me, it made the rash flare. It didn't increase gluten antibodies, but it made the rash angry...

Iodine was like water on a grease fire.

Not all salt is iodized. If you are interested in testing iodine I'd try something direct - like a bite of seaweed. Or, a bit of iodized salt in a dish.

Or, research the salty foods that make you itch and find out if they're iodized. Probably the best, first choice.

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Same here as Prickly only my problem with iodine lasted longer than Prickly's experience. I had to go low iodine for literally well over a year. I would keep testing it along the way & had to keep backing off of it. But since Sept., have been eating it to my heart's content & have no problems. I have not yet added back seafood or iodized salt but everything else is back on the table.

 

And I am very happy to say that 2 years & 1 month strict gluten-free; I have not itched in 4 or 5 days now & all my places are healing rapidly & no new ones have appeared. YAY! 

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Same here as Prickly only my problem with iodine lasted longer than Prickly's experience. I had to go low iodine for literally well over a year. I would keep testing it along the way & had to keep backing off of it. But since Sept., have been eating it to my heart's content & have no problems. I have not yet added back seafood or iodized salt but everything else is back on the table.

 

And I am very happy to say that 2 years & 1 month strict gluten-free; I have not itched in 4 or 5 days now & all my places are healing rapidly & no new ones have appeared. YAY! 

 

:o WOW.  Squirmy, that is wonderful to hear  :D  My first smile of the Day  :lol:

 

Colleen

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Same here as Prickly only my problem with iodine lasted longer than Prickly's experience. I had to go low iodine for literally well over a year. I would keep testing it along the way & had to keep backing off of it. But since Sept., have been eating it to my heart's content & have no problems. I have not yet added back seafood or iodized salt but everything else is back on the table.

And I am very happy to say that 2 years & 1 month strict gluten-free; I have not itched in 4 or 5 days now & all my places are healing rapidly & no new ones have appeared. YAY!

Excellent news!

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Thanks to both of you! Guess who is smiling also? :P Hubs has good news too in that he hasn't had any itchies in about 10 days --- all his skin is all healed up & you can't even tell he ever had anything. He's a happy camper!!!!

 

Not to steal your thread Blaze......just letting you & everyone know that perseverance DOES pay off & there is an end to this for all of us. It may take a lot longer for some but there IS an end.

 

And last but not least....... either hubs or I or both could have flares yet but one day there has to be a point where there are no flares. For now we are just enjoying the present & it's present to us. :lol:

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Congrats for sure!

Squirmy....when you say you would test iodine...can you explain what you mean...what you did?

Also, do you season with non-iodized salt...my understanding is it taste essentially the same.

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When I say I tested iodine, I would eat high iodine foods --- cheese is my Achilles heel & so I would eat cheese a couple times a day for a few days & maybe have some yogurt too. Each time I tried; I would get a flare up in a couple days so I would go off the iodine rich foods again. I finally got to a point where I did not test it for 4 or 5 months b/c I was tired of the disappointment. And then in Sept. I began testing again & all was good so I added more iodine like milk, egg yolks, butter, etc... & I have had no problems. I find zero taste difference between iodized table salt & non iodized table salt & yes, that's what I season with.

 

BTW, when I got iodine caused flares, if I quit the iodine foods, the flare would back off in 3 days time. But we are all different so your timeline may be shorter or longer. My hubs took 10 days to come down from iodine induced flares & he tried it twice & refused to try it again for close to a year.

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Ok...not to over analyze it...but why stop now?..

Are you both saying the flare up would result in both increasing itchiness and ALSO spreading/increased reddening of the rash?

I realize everyone is different, but I'm wondering if iodine will cause a relapse of the healing/ a new area of rash,/ a darker hue to the rash....or merely a temporary worsening of the itch.

Thanks for your patience!

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No problem Blaze! Ask any questions you want. I realized after I posted that I may not have made everything as clear as I could have. Okay, for me & also for my hubs this is how the iodine would affect us:

We would get many new blisters or lesions. We knew it was iodine b/c there were so many MORE suddenly popping up rather than "the usual".

Places that had been healing would backslide & reflare resulting in increased reddening, raised & itching & some would re new blistering

Places that were almost healed up would get red, raised & increased itching or renewed itching

 

I'm suspecting you're also wondering or asking why at some point the iodine doesn't have the maddening flare effect anymore. I can't really answer that. Maybe Prickly can. I can only surmise that the antibodies in our skin become less powerful as individuals & that's when the iodine does not have the same effect on the rash along with a lessening of the sheer # of antibodies????? Oh yes, I did have a time or 2 where I missed that carrageenan (seaweed) was in something & that was the very devil to pay!!!!!!! 

And if you're asking why would we go back to iodine rich foods...... we all NEED iodine as I'm sure you know so we try to go back on it asap PLUS we ALL need our calcium which comes mainly from dairy so we don't want to deprive our bodies any longer than we have to. Why didn't I take calcium supplements (non dairy ones that is)? I tried but my gut just couldn't handle them. For years & years before I discovered I had celiac I tried every single calcium supplement on the market & could not tolerate any of them. Indigestion big time, gerd, you name it. Now it all makes sense b/c it was the villi not able to handle the lactose. But when I went gluten-free then I knew to get non diary supplements. Still my gut was not in any shape to process such a hard mineral???? We celiacs have some weird stuff go on with foods, supplements so I didn't question it too deeply --- I just know I don't do well with calcium supplements of any kind. Same thing for me & B supplements --- they don't like me. I can EAT calcium rich foods now & have no problem & EAT high B foods & have no problem. I just think of it like this --- my body likes to get my vitamins & minerals from the foods I eat & personally, I think that's the best way for all of us to get what we need. I realize sometimes we have to supplement (if we can) but when we don't have to & can get it from food then we should.

 

I tried calcium supplements for so many years prior to celiac discovery b/c I am/was a prime candidate for osteoporosis. Petite, thin, smoker, going into early menopause, Caucasian. Now I'm post menopause & celiac so add those in & I really need my calcium!!!

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I had been clear almost 2 months, then went iodine crazy at thanksgiving the first year (about 5 months gluten-free, 2 months LI). New breakout. Not as bad, but bad enough to not eat leftovers and go LI for a week. Again.

Iodine makes the gluten antibodies angry - makes the rash flare. I don't know the scientific interaction. Gluten antibodies cause dh, iodine can make dh flare.

Not everyone reacts to iodine. But if you do, watch it! Yes, it can turn healed skin into blisters, it can make a small rash big.

Iodine deficiency used to be an issue in this country (hence iodine fortified salt). Deficiency causes goiter, etc. your thyroid needs a certain level of iodine to maintain function. I have Hashimotos so low iodine long term/permanently wasn't a good idea.

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If you're going to avoid iodine then read the ingredients. Almond Breeze has carrageenan (seaweed) which is one of the biggies that usually gets those of us who need to steer clear of iodine. You'll find many of those nut milks contain carrageenan.

 

http://almondbreeze.com/?navid=329&pid=330

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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/pap-fol/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.

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Terrific! :)

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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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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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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.

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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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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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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 b%$@#! 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!!!!!!!! 

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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 b%$@#! 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.

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Amen! :D

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