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Newly Diagnosed with Questions


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#61 LauraB0927

 
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Posted 13 October 2012 - 09:25 PM

Hi LJ!

I dont have any experience with the DH (although I do have a suspicious growing rash on my fingers, but no blisters) but I wanted to reach out and lend some support. It sounds like you're going through such a tough time but you are getting fantastic advice from others on here who definitely know what they are talking about. I think we all have that initial panic episode where we are terrified to eat - I know I had it. The best advice I have was the advice that was given to me on here - whole foods, no processed foods - stick to the perimeter of the food store. Drink a lot of water and if you have it available to you, grass-fed meats were a god-send to me and are so much easier to digest in our damaged guts. While it might be hard to envision now, it WILL get better with time and obviously gluten free foods. Ask any questions you want and dont be afraid to give details - I think this is the only place where I feel completely free to discuss my bowels without a second thought! Best wishes to you!
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"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
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#62 L.J.

 
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Posted 14 October 2012 - 08:52 AM

Hi LauraB0927!

Hmmm, a growing rash on your fingers sounds *very* familiar in a "not so great way" :(

For me, it started with a rash on my legs--and then a rash on my fingers. After awhile, the "rash" exploded into the blisters. Just something for you to be aware of maybe?

Thank you for your encouragement! Isn't it great that we can talk about "bowel issues" freely and without fear here? It is truly a gift to have found this amazing and supportive site! Thanks for your words of advice! :D



Hi LJ!

I dont have any experience with the DH (although I do have a suspicious growing rash on my fingers, but no blisters) but I wanted to reach out and lend some support. It sounds like you're going through such a tough time but you are getting fantastic advice from others on here who definitely know what they are talking about. I think we all have that initial panic episode where we are terrified to eat - I know I had it. The best advice I have was the advice that was given to me on here - whole foods, no processed foods - stick to the perimeter of the food store. Drink a lot of water and if you have it available to you, grass-fed meats were a god-send to me and are so much easier to digest in our damaged guts. While it might be hard to envision now, it WILL get better with time and obviously gluten free foods. Ask any questions you want and dont be afraid to give details - I think this is the only place where I feel completely free to discuss my bowels without a second thought! Best wishes to you!


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#63 GFinDC

 
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Posted 14 October 2012 - 08:41 PM

Actually PF, the whole list is *not* on my safe list--only half of them are...the other half are on my "no" list...Makes me wonder about the half I think are safe. But, I will see...

One question, (seems simple...but I am a bit fearful of trying new foods still)???
I have been wanting to try some pure cherry jam on a Rice Cake--Lundberg now! :D

I know you said avoid sweets--but I rarely eat them--do you think cherry jam is a good idea to try so quick??? (I read this, and I think, "Oh, L.J., you really are lame!" :D But that's where I am right now... :P


Hi L.J.,

You can try anything you want of course. The reason I suggest to people to avoid sugar and carbs at first is because the bacteria in our guts can get kind of out of control with the celiac damage and poor digestion issues. That bacterial overgrowth party often leads to bloating and D. Not fun stuff with a damaged gut that is irritated and hurting.

How about some organic or natural peanut butter with the rice cakes? Or some diabetic version jams? They have those in many stores now. They usually have low or no sugar and some kind of alternative sweetner. Stevia is a natural sweetner you could try, it works for some people but others find it has an aftertaste.

If you aren't having issues with bloating and gas and D you may not need to restrict sugar. The other tricky thing about sugar is it tends to make people have high energy for a while and then crash. That isn't good when you are already fighting fatigue. Coffee and caffeine do the same thing of course. But everyone has their own reactions to foods and what bothers one person may not bother another at all. The only way to know seems to be trying an elimination for a while. Sometimes when people are starting on the gluten-free diet they have reactions to just about everything they eat. But later those food reactions may taper off or disappear when the gut is somewhat healed.

Thanks for asking about my situation. I am doing fine right now. This year was a big turning point for me as far as improvement in health goes. I feel better than in the last 4.5 years since going gluten-free. I still have minor issues here and there but nothing too major or long lasting. It seems when I stray off the whole foods diet I get into problems. I ate some summer sausage not long ago and my feet and legs swelled up pretty bad from that. Probably the nitrates or nitrites in it did that. Guess I can do with out that stuff tho, no problem. :)

I am having some intermittent network issues so may be slow to respond. By the way, did you look at the Mayo clinic site link for the whole table of cross reactive foods? I could only post part of the table on the forum.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#64 squirmingitch

 
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Posted 15 October 2012 - 09:16 AM

L.J., I have read here that a lot of people went on the failsafe diet in the beginning b/c of food issues they were having similar to yours. You may want to consider it. Here's a link:

http://failsafediet....-diet-failsafe/
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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.

 


#65 L.J.

 
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Posted 15 October 2012 - 10:22 AM

Hi FP!

Good to know you are feeling better!!! I am beginning to recuperate from my little avocado spree! :) That adventure kicked my arse...I am still taking naps (which I normally don't do) as well as going to bed early. Oh, what an exciting life I live right now! :)

I am on the no gluten, no peanut, no tomotao, and no salt cleansing "eating plan"--The salt was associated with triggering rashes--Thanks to Squirmy, she found the article--and I added it to my eating plan.

The Good News: I *truly* am having fewer rashes--it has been about 2 1/2 days and the rash is less--with (Oh how I say this so quietly :) no new ones in 24 hours. Yay! :D

The Bad News: I cannot get enough calories. I also cannot afford to lose my weight. Any advice with this?

I have to run... I will look forwar to your thoughts--and as always--anyone's thoughts who read this!! :D

Found a few minutes--I have not looked at the Mayo site for cross contamination. I will, but I am most concerned about feeling starved! It is truly because I am not getting enough calories. I have to find a way to add more. While maintaining my "healthy eating" that is pretty restrictive right now!

I like the Diabetic's Jelly & have heard great things about Stevia. He d. is much better--even tried "some probiotics"...and no d.! My body is reacting well to the healthy nonpoisonous foods! :D :)

Just starving...:(




Hi L.J.,

You can try anything you want of course. The reason I suggest to people to avoid sugar and carbs at first is because the bacteria in our guts can get kind of out of control with the celiac damage and poor digestion issues. That bacterial overgrowth party often leads to bloating and D. Not fun stuff with a damaged gut that is irritated and hurting.

How about some organic or natural peanut butter with the rice cakes? Or some diabetic version jams? They have those in many stores now. They usually have low or no sugar and some kind of alternative sweetner. Stevia is a natural sweetner you could try, it works for some people but others find it has an aftertaste.

If you aren't having issues with bloating and gas and D you may not need to restrict sugar. The other tricky thing about sugar is it tends to make people have high energy for a while and then crash. That isn't good when you are already fighting fatigue. Coffee and caffeine do the same thing of course. But everyone has their own reactions to foods and what bothers one person may not bother another at all. The only way to know seems to be trying an elimination for a while. Sometimes when people are starting on the gluten-free diet they have reactions to just about everything they eat. But later those food reactions may taper off or disappear when the gut is somewhat healed.

Thanks for asking about my situation. I am doing fine right now. This year was a big turning point for me as far as improvement in health goes. I feel better than in the last 4.5 years since going gluten-free. I still have minor issues here and there but nothing too major or long lasting. It seems when I stray off the whole foods diet I get into problems. I ate some summer sausage not long ago and my feet and legs swelled up pretty bad from that. Probably the nitrates or nitrites in it did that. Guess I can do with out that stuff tho, no problem. :)

I am having some intermittent network issues so may be slow to respond. By the way, did you look at the Mayo clinic site link for the whole table of cross reactive foods? I could only post part of the table on the forum.


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#66 L.J.

 
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Posted 15 October 2012 - 10:52 AM

Hi Squirmy!

I am sticking with the one that is no salt, etc...My rash is better (said quietly)--and no d. I am truly going to try to for the two weeks...it is hard in that I need more calories, literally. I mentioned it to GFin, but I am seriously low on calories with no need to lose more weight. I am as low as I want to go. The low salt etc. food plan is helping! But, do you have any suggestions for more calories?

P.S. Thanks for finding that article--salt does seem to trigger the rashes. 24 hours--NO rashes that are new. :) :D


L.J., I have read here that a lot of people went on the failsafe diet in the beginning b/c of food issues they were having similar to yours. You may want to consider it. Here's a link:

http://failsafediet....-diet-failsafe/


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#67 GottaSki

 
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Posted 15 October 2012 - 11:35 AM

I am on the no gluten, no peanut, no tomotao, and no salt cleansing "eating plan"

I cannot get enough calories. I also cannot afford to lose my weight. Any advice with this?

When suggesting how to increase calories, I generally start with add healthy fats...like avocado - so I'll amend that a bit:

Can you eat nuts? Cashews, Pistachios, Almonds?
Coconut Oil - easy to add to many foods - when I'm low in calorie totals - quite often with my limited diet - I use a bit extra in my vegies and other foods.
Carbs - Potato, Sweet Potato, Rice, gluten-free Pasta
Goodies - gluten-free pancakes, waffles, cake, cookies, muffins and brownies :D - think you may be avoiding sugar, but if you don't need to avoid sweets - eat a few brownies for me ;)

I think I stuck to the "no" list you mentioned - there may be some of these you don't tolerate - hope not.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#68 L.J.

 
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Posted 15 October 2012 - 04:44 PM

When suggesting how to increase calories, I generally start with add healthy fats...like avocado - so I'll amend that a bit:

Can you eat nuts? Cashews, Pistachios, Almonds?
Coconut Oil - easy to add to many foods - when I'm low in calorie totals - quite often with my limited diet - I use a bit extra in my vegies and other foods.
Carbs - Potato, Sweet Potato, Rice, gluten-free Pasta
Goodies - gluten-free pancakes, waffles, cake, cookies, muffins and brownies :D - think you may be avoiding sugar, but if you don't need to avoid sweets - eat a few brownies for me ;)

I think I stuck to the "no" list you mentioned - there may be some of these you don't tolerate - hope not.


Hi GottaSki,

Good idea with the potatoes...I have not "tried sweet potatoes"--it is one of the foods I want to add first. I think I can eat white potatoes--definitely eating rice. I cannot eat any cashew, nuts, almonds, or chocolate. etc. I have been trying to avoid sweets for two weeks (at this point--1 week and 2-3 days to go! Then I will be more free to eat more things. But focusing today on rice and may add a potatoe (the low iodine diet I am using says no skin of the potatoe) ... But--I love potatoes...And need more calories. Believe it or not, I have not tried the gluten-free Pasta! It has been a hectic week...and I am not sure what I would put on it. (No tomatoes, No milk/cheese)... I am hoping and feeling positive that once my body mellows out--I will be able to add some more food...More Potatoes & Rice Yummmy :) More food! Yummmy :D
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#69 squirmingitch

 
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Posted 15 October 2012 - 04:50 PM

No coconut oil ---- iodine. Sorry. That includes olive oil also. But if you can do cashews then you can also do cashew butter! I have cashew butter spread on either rice cakes or on bread in a bowl every morning.
Here's a recipe for bun in a bowl --- I am copying & pasting with my own notes added on the ingredients. I also make a "white bread" version of it --- if you want that recipe then just pm me.


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.
***************************************************************************************************************************************
The first time I tried this I was so happy to have something that tasted like REAL bread. I sat down on the kitchen floor & stuffed my face! When I finished it, I stood up, made another & gorged myself again. Moaning in ecstasy the entire time.Posted Image

Apples with cashew or almond butter on them.

Part of what you're going through is gluten withdrawal. It makes you absolutely RAVENOUS!!!!!!!!!!!!!!!!!! Constantly. It lasted for me about 5 weeks. I had to eat every 20 minutes & was hungry in between!Posted Image

I was down to 97 lbs. before going gluten-free & I'm just under 5'2". I did not lose any weight when I went gluten-free even though I felt like I was going to waste away. Like you, I felt I wasn't getting enough food or calories. Over 10 months now & I've only put on close to 3 lbs. but am feeling better. Healing takes time. Our guts are ravaged. Only when they heal will we see the true results. I don't expect to get back up to my lifelong normal of 103 lbs. for a while. But I know it will happen. My gut still has healing to do. My entire body still has healing to do. My muscles were wasted. They have just begun to show a little progress very recently. It isn' t much progress & others probably wouldn't even notice the difference to look at me but I can see & feel the minute difference.
Your body is going to need more protein now too so up the protein. Have steak for breakfast! Seriously. Have steak, pan fried potatoes (peel those suckers --- iodine in the skin), bun in a bowl with cashew or almond butter on it & egg whites.
Keep fruit around for the in between times.

I'm very glad to hear the rash is (shhhhhhhh) better. And no D is GOOD!

You can also look in your store or order online ---- Enjoy Life cookies. We have tried several of their varieties & they are very good!Posted Image They are free of the top 8 allergens so they should be safe for you. They are free of gluten, wheat, dairy, peanuts, tree nuts, egg, soy, fish, shellfish, (eeewwwww - who would want a cookie with fish or shellfish in it? Posted Image) also made without potato, sesame & sulfites.
  • 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.

 


#70 squirmingitch

 
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Posted 15 October 2012 - 05:04 PM

Ah, slow typist that I am; I see you answered the question about nuts before I finished.

Okay, rice then:

Hubs & I make a stir fry. Get saffron threads (pricey but a little goes a long way) & make saffron rice.
I cut up:
celery
snow peas
leeks
cabbage
chicken breast
sometimes I throw in cauliflower or green beans or green peas whatever have you......

Make a big batch up. It's actually better leftover & makes great snacks when nuked. I just had some for snack!
  • 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.

 


#71 squirmingitch

 
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Posted 15 October 2012 - 05:34 PM

Oh! And I will add a few things here. We seem to do better with safflower oil rather than canola oil. And my hubs is so paranoid about iodine that he doesn't even want a baked potato baked with the skin on so we peel them deeply & I then rub safflower oil on them & proceed to bake as a normal baked potato. It works! Instead of butter on rice or potatoes or veggies we drizzle safflower oil.
You can get some ground pork & use that in egg whites in the morning (b/c sausage has so much STUFF in it). Makes the egg whites go down a lot easier.
  • 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.

 


#72 GFinDC

 
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Posted 16 October 2012 - 12:34 AM

Hi FP!

Good to know you are feeling better!!! I am beginning to recuperate from my little avocado spree! :) That adventure kicked my arse...I am still taking naps (which I normally don't do) as well as going to bed early. Oh, what an exciting life I live right now! :)

I am on the no gluten, no peanut, no tomotao, and no salt cleansing "eating plan"--The salt was associated with triggering rashes--Thanks to Squirmy, she found the article--and I added it to my eating plan.

The Good News: I *truly* am having fewer rashes--it has been about 2 1/2 days and the rash is less--with (Oh how I say this so quietly :) no new ones in 24 hours. Yay! :D

The Bad News: I cannot get enough calories. I also cannot afford to lose my weight. Any advice with this?
I have to run... I will look forwar to your thoughts--and as always--anyone's thoughts who read this!! :D

Found a few minutes--I have not looked at the Mayo site for cross contamination. I will, but I am most concerned about feeling starved! It is truly because I am not getting enough calories. I have to find a way to add more. While maintaining my "healthy eating" that is pretty restrictive right now!

I like the Diabetic's Jelly & have heard great things about Stevia. He d. is much better--even tried "some probiotics"...and no d.! My body is reacting well to the healthy nonpoisonous foods! :D :)

Just starving...:(


Hi L. J,

I don't think you need to avoid all salt. It's the iodized salts that are a problem. Those are usually marked with a "iodized" on the label. Sea salt may not be good either, but any other non-iodized salt would be ok, I think. Squirmy or someone with DH would know better than me tho.

How about meats? Can you eat chicken, beef etc? If you can eat them it would probably help to eat some meat with every meal. Quinoa is good for nutrition also if you can tolerate it. Some people like it fine and others don't same as usual with any food around here.

Mushrooms, onions, and green beans may work too, but I am not sure about the iodine levels in them.

How about other beans? Can you do pinto beans or fava beans or black beans? Black beans seem like one of the easiest to digest for me.

Dinner for breakfast is a good idea, I often do that.

Yesterday I ate fava beans with onion and ham and a little rice.

Today I ate BRM Mighty Tastey Hot Cereal with a little cocoa powder, banana chips (sorry out for you), and a bit of sugar. I won't eat something like that again for several days at least tho. Generally I avoid eating carby foods consecutive days.

I drink plain old water. No coffee or tea usually. I may try the nettle tea that is all the rage on the board lately tho. Got to be trendy sometimes after all! :)
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#73 squirmingitch

 
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Posted 16 October 2012 - 04:55 AM

You can buy non-iodized salt. it says on the label, "this salt does not supply iodine, a necessary nutrient".
  • 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.

 


#74 bartfull

 
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Posted 16 October 2012 - 07:56 AM

Actually, sea salt doesn't have much if any iodine either. One would think that it does, but I looked it up when I couldn't tolerate white potatoes because I was LOOKING for a source of iodine. I think there was a thread here recently talking about all of the additives in salt, some of which are not good for us. I get pure sea salt at my healthfood store.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#75 squirmingitch

 
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Posted 16 October 2012 - 09:04 AM

Actually the thyca low iodine diet says to avoid sea salt. Quote:

"Iodized salt and sea salt and any foods containing iodized salt or sea salt. Non-iodized salt may be used. For example, Kosher salt is okay unless the label says that it is iodized or sea salt.The reason to avoid sea salt is that all products from the ocean tend to be high in iodine.You can usually find plain, non-iodized salt next to the iodized salt at your grocer. Read the label. (One teaspoon of iodized salt has 400 mcg of iodine.)"
  • 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.

 





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