Time To Get Real

[jlaw]

Hi Friends, I'm realising I'm in a bit of denial writing this! In fact, I'm even hoping that if anybody replies, I can put their answer away for future reference!!

So I went completely gluten-free since my endoscopy early October, and within about 2 weeks I noticed some good improvement.

But now....it's pretty much as bad as it ever was.I'm not sure if I got a bit complacent at that point or what happened? I live in India - there is no requirement to state if a product is manufactured with wheat or to declare other allergens. So if an ingredient list doesn't contain gluten, I have been eating it. In fact even if wheat is processed at the same plant (it is stated very occassionally) I would still eat it.

But I'm wondering about iodine mainly. I live in an area of India where meals are rice based more than bread based but EVERYTHING is salt based!! I honestly feel like it would be easier to be gluten-free here rather than iodine free. Also with the constant humidity, sweating is a daily factor and I'm sure makes the DH worse. I honestly wonder if I can live here anymore sometimes! So I have been ignoring the whole issue and hoping it didn't apply to me! Low sodium salt can be hunted down, but not low iodine.

So - do I have to cook every single meal myself?? What are your experiences with iodine after the initial couple of weeks? Has anybody had to cut iodine out permanently. Would love to hear your stories on the iodine thing. Does anybody know of any articles/research on this? Squirming, will have to go back over your list....

Thanks :-)

[pricklypear1971]

A study about iodine. I haven't seen an official study about a low iodine diet, but the extrapolation is there. Open Original Shared Link

Here's an article about it https://www.celiac.com/articles/177/1/The-Gluten-Intolerance-Group-of-North-America-on-Iodine-and-Dermatitis-Herpetiformis/Page1.html

You must be very careful about gluten. A CRUMB can set off the autoimmune reaction. I advise cleaning up your diet re: gluten, first. Start with the major food manufacturers of basic items - canned products you use, processed condiments. Call them. Find out about their practices and narrow down what you can eat.

Most of us, even in countries where labeling is better, still cook almost all of our own foods. It's just safer that way.

Regarding iodine, I suggest reading here Open Original Shared Link . Read page 9.

Salt does not contain iodine unless iodine is added. Sea salt contains various levels of iodine, depending on where it was sourced.

1) clean up your diet

2) try a low iodine diet or at least toss out the biggest offenders and see what happens. It isn't all about the salt.

It took about 2 weeks for my DH to heal after I went LI. I had been gluten-free for a few months. I must say my DH is not very sensitive to cc in comparison to most. It is more sensitive to iodine and ai issues like colds, flu. We are all different. It took 2-3 months to go back on an iodine rich diet.

[squirmingitch]

UGH! Iodine is a b%$@#! For me & for many others. I'm 9 1/2 months in gluten-free & have been low iodine for months now. About 10 days ago decided to have some certified gluten-free cookies & a few things --- not much mind you but just enough to salve not having had those things in many, many months. I did good making sure all was certified gluten-free. What I messed up on was not checking closely for iodine. I started breaking out like crazy. I checked the packages ----- Aiiiiiiiiiiiiiiiiiiiiiiiiiiiiii CARAGEENAN! SEA SALT! BUTTER!!!!!

Kicking self in butt all the way into next week! WHAT an idiot I am!

I sit here typing you with a scalp that has so many weeping lesions on it that there are very few unaffected spots on it. My lower back looks like I was peppered with bird shot, weeping sores. My upper back has little places all over it with a few nasty places. From below my breasts to my belly button is horrible with places. Like I had chicken pox or something. The backs of my hands, my neck & places, blisters strewn across my body.

So yes, iodine can make your dh go bonkers even 9 1/2 months down the road. And longer.

Can you order non iodized salt online & have it shipped from another country?

I'm afraid you may have to cook all your meals as long as you live in India. Heck, I live in the US & am still cooking ALL our meals. Whole foods. Except for the screw up I just did with a few cookies & other delectables. Won't be doing that again anytime soon.

I can also tell you that eatmeatforgood had problems with iodine for over a year. In fact even now, if she gets too much she gets blisters. Hopeful 1950 too. I'm sure they will be on here to tell you their experiences. I can't remember how long pricklypear has been gluten-free but it's been longer than me & she has stated that if she gets too much iodine she gets got.

[squirmingitch]

See how slow a typist I am? Pricklypear has already answered.

[pricklypear1971]

See how slow a typist I am? Pricklypear has already answered.

Oh squirmy, I'm so sorry to hear you got "got".

Effing carageenan!!!! Ugh.

Btw I had a small breakout from this stomach bug. Nothing like yours, though. Took me a while to figure out what was happening....sometimes I'm slow .

[squirmingitch]

Oh squirmy, I'm so sorry to hear you got "got".

Effing carageenan!!!! Ugh.

Btw I had a small breakout from this stomach bug. Nothing like yours, though. Took me a while to figure out what was happening....sometimes I'm slow .

Thanks Prickly. This is the most miserable I've been since April 2011 before gluten-free when I had the mother of all outbreaks. BUT, I can say LESSON LEARNED!!!! Never again!

I'm sorry you got got too.

Yes, this stuff can be danged hard to figure out exactly why one is breaking out. I am thankful that we have a gluten-free household & only eat whole foods --- nothing canned or processed. This is the only way I know I'm sure what caused this.

Speaking of canned foods --- something I missed until eatmeatforgood pointed it out is that canned goods contain iodine --- it's somehow in the cans. Says so on thyca.org: See # 10 on page 3 or 4:

Open Original Shared Link

[jlaw]

Squirming, I am actually quite thankful for the description of your DH and it's locations! I'm sorry it's so awful - and you sound like we could be DH twins. The scalp is a new addition for me as are the backs of my hands and tops of my feet.

[jlaw]

thanks everyone. I had not even heard of carrageenan before!? Will be on the lookout. Prickly - thanks for the reminder that salt is not automatically iodised. Although all salt here definitely eems to be! And thanks for the link to page 9. I've opened the thyca document before but got immediately overwhelmed and closed it!

So this is quite restrictive - for those that have used it, how long did you do it for? For example did you just do it until you started seeing improvement and then slowly add things back in? I'm just wondering if I should get serious about cutting out dairy/eggs or just cut out the added salt in meals etc? It will definitely mean not eating out - no more fantastic curries for awhile!

Did any of you not have to cut any of this out?? I know we'll all be different, but the realisation that this could be my next step is my next pill to swallow, so to speak. I'd love to hear your experiences in terms of how strict you are. Especially those that have had to do this more long term. Quite seriously, this will affect my ability to live here and may need to consider moving back home.

Especially since we don't have a fridge or running water! Cooking meals is already quite time consuming!

Thank you again. I'd be lost without this forum!

[squirmingitch]

"Iodized salt; sea salt in any form such as: onion, celery, garlic and seasoned

salt; and kelp (seaweed). Avoid any food containing iodates, iodides, align,

a1ginates, carrageen, and agar."

The above quote from one of the links I posted earlier. Kelp, seaweed & carageen all are basically kelp from the sea. Carageen is in LOTS of stuff. It acts as a binding agent like eggs sort of. And they use it in gluten-free products in place of eggs. Watch for it in the cow's milk replacements such as rice milk, almond milk, coconut milk. The stuff is everywhere. I saw some cheese replacement which used carageen & sea salt both.

I went low iodine pretty early on & then began to eat iodine again in small quantities & it seemed to build up & be cumulative & so for about the past 5 months I have been low iodine. But I had been drinking some milk from a local dairy which uses iodine only AFTER milking so it's lower than anything I can lay my hands on. I had been for those 5 months drinking 2 oz. of that every morning & was doing okay on that. Otherwise, I have been pretty strict on the low iodine diet which says it gets you down to 50 mcg per day. so add that to ?? I was getting from the milk. I did have a recent thyroid test --- TSH, Free T3, T4 & all was well with my thyroid. I only use egg whites; no egg yolks.

[pricklypear1971]

When I read about DH and iodine I was cooking shrimp.

I closed the web browser and said "hell no, that's not ME!".

A few days later I broke out again. I don't think it was the shrimp, I think it was a multivitamin with IODINE...but nevertheless.... That's how I figured it out.

Everyone is different. You may only need a short time, you never know til you try.

Your FIRST priority is to clean up your diet re: gluten.

[ravenwoodglass]

Did any of you not have to cut any of this out??

All I had to do was cut out iodized salt for a few months and my DH was severe before diagnosis. It can take up to 2 years for the antibodies to leave the skin and until then even a tiny amount of cross contamination from gluten will cause the DH to flare. I have added back in iodized salt, it is an important nutrient and should not be avoided forever, and even with a bit of CC on occasion I will only get one or two little blisters now.

If your having a lot of problems with DH on the scalp be sure the shampoos and other hair products you are using are also gluten free.

[squirmingitch]

I might add that one of our posters --- itchy --- says they kept a log & it seemed that iodine never had any effect whatsoever good or bad on the dh. Just putting that in there for what it's worth. I'm sure at some point itchy will be on to tell you. 3 years now for itchy & last I recall a month or two ago said just had a little bit that comes in the scalp but otherwise doing good.

[eatmeat4good]

It took me a year and a half to heal my DH.

Any cross contamination would cause the lesions to weep and peel and sting again....for several weeks.

I recommend you do not use any products that are manufactured in a facility that processes wheat. Limiting iodine won't really help if you are getting contaminated from gluten. I think you are getting a lot CC from your description of things.

I had to get very strict. No eating out. Not only no gluten, but nothing processed in a shared facility or on shared lines. I had to limit iodine. My experience was much like Prickly's. I ate a lot of shrimp when I went gluten free. Thinking I would eat better food since I had to be gluten free. But I didn't get any better. I finally gave up iodine and eggs, dairy, asparagus, canned goods, anything with carageenan, iodized salt and sea salt. Then I started to get better. I had to limit iodine for many months. I tested it from time to time and the result wasn't good. I finally healed and after a few weeks after I was totally healed I was able to use small amounts of iodized salt.

Make sure you eliminate possible sources of gluten. If they aren't labeling accurately you may have to limit yourself to meat, vegetables and fruit. Even nuts are often packaged on shared lines with wheat. It's a nightmare trying to figure out all the ways you could be getting contaminated, but once you do figure it out, it is so much better.

[jlaw]

Thanks everyone, this has been so good and helpful. In the end, I think pricklypear is right - I have to get serious about the whole CC thing. It's been hard up until now to get my head around how sensitive I could be - one crumb??? Just seems impossible. But My skin is as bad as it ever was - and now with scalp involvement. So thanks all for your help, and thank you pricklypear for the wake up call.