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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Soy Lecithin
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KikiB    4

Well I already know that soy makes me sick. I have really been trying to talk myself into the fact that soy lecithin won't bother me.

Wrong. Maybe I can get away with one Sees bordeaux. Although now I'm scared. But that's it. I got a box for Christmas. I apparently can't do 3 one day, and 2 the next day without paying the price for over 24 hours. It felt just like being glutened. Nausea, severe fatigue and muscle weakness.

Will this ever go away? Will the soy intolerance go away? Soy is in flipping everything. I can't find a salad dressing that does not have soy in it. And now I'm supposed to give up See's bordeaux to this stupid disease?

Ugh.

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mushroom    1,205

Soy overall, probably not; soy lecithin, maybe. I can do it now. But that's after four years or so.

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KikiB    4

Soy overall, probably not; soy lecithin, maybe. I can do it now. But that's after four years or so.

Well that's better than nothing! I'll take it.

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seashele2    5

Since my diagnosis 8 1/2 years ago and going gluten-free, I have had to take one food after another out of my diet: corn (which causes me gluten reactions/damage), dairy, soy, beef, pork, sulfites (onions, garlic, brussel sprouts, cabbage, and a hundred others). I can only do very few things with soy lecithin in them. I think it has to do with how the particular soy lecithin is made and if the soy proteins have truly been "processed out." I think my problems all come back to leaky gut so this year, my plan is to go on the extremely limited diet to try to heal it. Hopefully, someday I'll be able to eat like a semi-normal person again. Gluten-free wouldn't be so bad if I could eat all the other things that keep coming out of my safe foods.

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Juliebove    93

It could go away. It did for my daughter but... Now she has a thyroid problem so still has to avoid soy.

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KikiB    4

It could go away. It did for my daughter but... Now she has a thyroid problem so still has to avoid soy.

Before the thyroid problem, her soy issue went away? Or just soy lecithin?

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alex11602    75

It took my daughter a year to get all soy back, it may have been sooner but I waited to try it with her since she is young.

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Hi Kiki, soy lechitin gives me heart problems (extrasystoles). I also avoid it because of my thyroid disorders, and I am currently making my own pretty much anything. Have you tried looking up recipes to make your own salad dressings et cetera? I never use dressings, but I am pretty sure it can't be impossible to make?

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Pegleg84    50

Soy is now officially my worst enemy.

I also like to think that a little soy lectin won't hurt me. And probably a very little of it won't. Like, 2 chocolate chips or something. Maybe.

More than the tiniest bit send my head spinning in minutes. It's not worth the risk.

You can indeed get things without it, though it takes serious hunting, and shelling out more. Get organic dark chocolate, usually the darker the better. Check your local organics store to see what they have. I think some of the Green & Blacks chocolate is ok.

Enjoy Life and Camino dark chocolate chips are soy free.

Salad dressings - get something vinegar based. Again with the organic. Though I just found some vegan and soy-free "cream" dressings. Can't remember the name. Uses a lot of coconut instead. I got the ranch. It's runny, but not bad.

Ask at your local store and maybe they can help. Making your own is also a good idea.

Oh! and soy-sauce substitute: Coconut Aminos. It's made from coconut sap, is a bit sweeter than tamari, but it does the trick.

For me the effects of soy are worse than dairy and, for immediate reaction, almost worse than gluten. It suuucks!

Good luck.

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KikiB    4

Hi Kiki, soy lechitin gives me heart problems (extrasystoles). I also avoid it because of my thyroid disorders, and I am currently making my own pretty much anything. Have you tried looking up recipes to make your own salad dressings et cetera? I never use dressings, but I am pretty sure it can't be impossible to make?

I found a recipe for easy mayo -- so I will try that this weekend. And I found a ranch dressing recipe I will try. :)

Soy is now officially my worst enemy.

I also like to think that a little soy lectin won't hurt me. And probably a very little of it won't. Like, 2 chocolate chips or something. Maybe.

More than the tiniest bit send my head spinning in minutes. It's not worth the risk.

You can indeed get things without it, though it takes serious hunting, and shelling out more. Get organic dark chocolate, usually the darker the better. Check your local organics store to see what they have. I think some of the Green & Blacks chocolate is ok.

Enjoy Life and Camino dark chocolate chips are soy free.

Salad dressings - get something vinegar based. Again with the organic. Though I just found some vegan and soy-free "cream" dressings. Can't remember the name. Uses a lot of coconut instead. I got the ranch. It's runny, but not bad.

Ask at your local store and maybe they can help. Making your own is also a good idea.

Oh! and soy-sauce substitute: Coconut Aminos. It's made from coconut sap, is a bit sweeter than tamari, but it does the trick.

For me the effects of soy are worse than dairy and, for immediate reaction, almost worse than gluten. It suuucks!

Good luck.

Thanks for the tips! I only like milk chocolate, but I can probably live without it. It's just disappointing. I really don't understand why soy is in nearly everything these days.

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Pegleg84    50

If you're ok with milk, then there is probably some soy-free milk chocolate out there too.

(If you're ok with milk, then I'm jealous. I miss cheese so much!)

Good luck!

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Oh! and soy-sauce substitute: Coconut Aminos. It's made from coconut sap, is a bit sweeter than tamari, but it does the trick.

Pegleg84 thank you so much for this. I've finally accepted that I can't have soy anymore, but I love stirfrys. My daughter has decided she's vegetarian now, so stir frys were my go to meal. I'd do tofu for her and meat for her dad and I. I was wondering how this was going to work. I'm going to look for the coconut aminos today. :)

(If you're ok with milk, then I'm jealous. I miss cheese so much!)

Amen to that! I can deal with giving up milk, yogurt, and ice-cream, but cheese?!? That one is so difficult. And sorry to all you vegans out there, but that vegan cheese is NOT the same.

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Pegleg84    50

Look at a good natural foods store, or ask if they can get it. It's a bit pricy, but it's worth it.

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