I react to soy much the same as to gluten. And in fact, soy can destroy the villi as well.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.
Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.
My main soy symptom involves the swelling of my throat. It's kinda freaky. I also get all the GI problems from soy, almost as bad as gluten, but not quite - mainly in the sense that I can handle tiny amounts in chocolate and what not. But I can only handle the tiny amounts if I'm really good about cutting out all of the obvious sources.
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"Let food be thy medicine, and let thy medicine be food." - Hippocrates
It has just been about three months since I have been having major reactions to soy and you are definitely right. It does hide in a lot of places.
The reaction, at least for me, is completely different than for gluten. In fact, for awhile I was confusing it somewhat for acid reflux. The symptoms have included major difficulty swallowing, hoarseness, some slight neck swelling (a bit like mumps), shortness of breath (although I exercise regularly), weakness in my arms and significant weight loss. There has been some dehydration but that may or may not be related.
Right now, I am in a similar mode to what I experienced after going gluten free. I am OK for a bit, then the symptoms come back. Every single time, I have been able to track down soy in something I ate. The hardest so far were the mono- and di-glycerides in the ice cream I buy. The manufacturers web site listed the ingredients and the two were clickable. The link mentioned soybeans.
With most of the soy out of the way, I have noticed what may be a very slight reaction to canola oil. I switched from soy oil-based mayo to canola-based and have noticed slight neck symptoms after eating it.
Needless to say, I am getting tired of having to toss out food. This is worse than celiac disease. With a gluten accident, all I worried about was the little d. With difficulty swallowing and feeling like my neck would cramp up, I can't help but think about the big D.
It is hard to give up chocolate. I gave it up for barley sweetened carob chips. Got tested for allergies because of my son's eczema. Am allergic to soy/wheat/dairy mainly. Now I can't have carob chips or chocolate chips because of soy lecithin. I can still have carob powder which is good mixed with peanut butter and vanilla rice dream frozen dessert. What I haven't researched yet is if all solid chocolate has soy lecithin in it. I was on a vegan diet. Whole family has moved back to meat eating. My two oldest are having major attitude problems with switching diets. They don't like meat. My oldest will tolerate very little but at least eats some. I never had any symptoms that I know of and would have continued on the vegan diet had I not had an allergy test done. I do have grass allergies so I guess I shouldn't be surprised about wheat. I practically live indoors during the summer. That should get better, hopefully by next year I'll be able to be outside more and enjoy it. And yes, as Ursala says soy is bad for the villi also. I have learned all of this recently, within the last month or so.
Mostly I have GI symptoms, but for me the degree of reactivity I find depends on what other ingredients the soy is mixed with. If I have soy ice cream or baked goods with soy in them I get terrible GI symptoms (but it's the absolute worst with soy ice cream), so I suspect soy + sugar has synergistic effects in my body. If I have soy protein powder I get bad cyst type acne around the jaw line area.
My reactions to soy are much like the ones I have to gluten and lactose....gi....extreme gas and pain and sometimes consitipation, someimtes D. I only found this out when drinking soy milk to try to make up for not drinking cow's milk. I can tolerate some soy in baked products or chocolate in very small amounts.
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Kim
"Life isn't about how to survive the storm
but how to dance in the rain."
Positive bloodwork 1/9/06
gluten-free since 1/12/06
Very positive dietary response
DS (12 years old)
Biopsy 7/7/06 ~ Diagnosed Celiac 7/12/2006
gluten-free since 7/15/2006
DD (almost 6)
HLA-DQ2 positive
Celiac Bloodwork negative 2 different times
Still eating gluten for now.
I am gluten, dairy and soy intolerant. After a year without chocolate (which contains both dairy and soy lecithin), I discovered those ELF chocolate chips, Ener-G Foods chocolate chips and ELITE bittersweet chocolate bars. Those bars are made in Israel and are kosher (no soy or dairy). I buy those at a local grocery store which has a fantastic kosher section manager who special orders those for me. I buy them by the case!
BURDEE
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D, thyroid supplement, arabinogalactan and DHEA to improve immunity.
DAIRY and GLUTEN FREE - SOY FREE - Maybe CC with NUTS Walmart has it hidden in the kosher isle.
Gray colored wraper, gold and white lettering. Perhaps they are old packaging? It's different then what apear in the euro site. They have a dark chocolate one stuffed with a hazelnut filling. To avoid dairy go dark chocolate. Since becoming a celiac I like dark chocolate better then milk or white chocolate its also yummy.
ALPROSE DARK CHOCOLATE BARS are about $2 or $3 a bar.
I am also a celiac that is reactive to SOY. I believe it is for me as bad as gluten, and the real reason for my serious thyroid problems. There are threads here pro and con-soy; we are living in a new time of discovery. We are so lucky we have found each other to spread the word to those that want a better quality of life.
I, of course, am gluten free for almost 5 yrs, 2 yrs ago I found I was soy intolerant, then that December I found I am corn intolerant, last summer I found I couldnt have tomato in any form or potato, and as of late, I find I can't tolerate starches. Now the soy lecithin doesnt bother me and I cant use margarine, but am thinking I may get away from it too. Soy and corn always constipate me, which sometimes I feel is worse then diarrhea. I do not eat any red meats any more and am getting really bored with chicken. Deb
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Deb
Long Island, NY
Double DQ1, subtype 6
We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!
I, of course, am gluten free for almost 5 yrs, 2 yrs ago I found I was soy intolerant, then that December I found I am corn intolerant, last summer I found I couldnt have tomato in any form or potato, and as of late, I find I can't tolerate starches. Now the soy lecithin doesnt bother me and I cant use margarine, but am thinking I may get away from it too. Soy and corn always constipate me, which sometimes I feel is worse then diarrhea. I do not eat any red meats any more and am getting really bored with chicken. Deb
darlindeb -- You sound like me.
Not to get off topic, but did you read "dangerouse grains' the book? It talks about how many celiacs end up with secondary food intolerance/allergies over time. I wish we all knew that in the begining. And I know just want you mean darlindeb, but the book said we must rotate our diet and not eat the same things all the time. Its hard. Our body builds up a tolerance or something like that to those foods we always eat. I know what you are going through... Be well!
Does anyone else find that they react to soy flour much worse than tofu etc? Soy flour (in biscuits/cakes etc) has a really quick reaction with me - I get some similar reactions to my coeliac ones - bloating/gas etc, but I think things like tofu/gluten-free tamari are OK...