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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Soy Allergy Vs. Soy Intolerance
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Is there such a thing as having a soy intolerance?

I cannot tolerate soy at all, besides of breaking out in hives et al, I get periods of extremely jitteriness/have had an anaphalactic attack (I'm sure my sp is off here...)/rapid heart beat/extreme digestive distress. The big key factor is that I react to soy oil, which apparently has now been determined that a reaction to soy oil is not an allergic reaction. I've asked my allergy doctor what the hell reaction am I having then, not in those words, and he just shrugged his shoulders and says it's something else I'm reacting to. I do not think so. I've gone through these extreme cycles where I can totally tolerate soy in any form whatsoever, as well as gluten when I wasn't aware of my intolerance to gluten, and then suddenly I can't tolerate it anymore and my diet gets extremely limited. The worst was the time when I could only tolerate meat and cooked vegetables, and nuts. Everything else I reacted to. An "allergy" that comes and goes doesn't seem to me to be an allergy.

Does anyone else experience the same as me? Has anyone been diagnosed with a soy intolerance? What type of doctor should I be seeing?

Help.

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Yeah, there is such a thing as soy intolerance. It is something diagnosed by Enterolab, to my distress :rolleyes: I never realized I had a problem with it; my reaction is subtle. I only figured it out when I tried going soyfree. According to the book "Food Allergy Survival Guide," soy allergies or intolerances (it uses both terms) can be subtle.

I think whether something is deemed an allergy or not depends on one's definition. Is allergy restricted to an immediate, IgE response or do you include delayed onset reactions? But in practice, what difference does it make? If eating something makes you sick, don't eat it. You don't need a doctor's approval.

It is news to me that a reaction to soy oil is not an allergic reaction. Try researching soy allergies online -- soybean oil is listed as something to avoid. You may find comments that it is "normally" OK or the like, but this implies that for some individuals it is NOT OK. I've seen comments several times like the following: "Studies show that most soy-allergic individuals may safely eat soybean oil (not cold pressed, expeller pressed, or extruded oil)." http://www.foodallergy.org/allergens/soy.html

Thing is, how are you supposed to tell how the soybean oil was made? And again, it says "most." That means some can not safely eat it.

The other night, as an experiment, I went to a vegetarian restaurant where everything is made with soybean oil. I had a major reaction. I guess this was the biggest jolt of soy I had had since going soy free.

I've heard, too, that soy lecithin is OK for most people. But I've talked on this forum with folks who react to it. This may be analogous to casein intolerance, where some people can handle butter or ghee and others can't.

Why your tolerance comes and goes is not something I can explain. Could it be you avoid the stuff and your gut heals ... then you eat it without problem, which causes your gut to be injured ... and the process repeats? I don't really know. Perhaps someone else has had this experience. Is there anything to explain why your immune system would be more reactive at some times and not others?

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I might be experiencing something similar.

For about a year and a half, I've been working under the assumption I have a soy intolerance. I haven't bothered with an official DX because I have given up with doctors. They are useless with this sort of thing.

The beginning of last year, I suddenly started having a problem where something in the right side of my neck swelled up. I also started having problems swallowing. The odd thing was that in March of that year, I went away on a trip for a week and everything cleared up. 18 hours after I returned home, everything came back. Since my travel diet is very simple, I immediately suspected something I was eating was causing the problems.

To keep this short, it took about a year to gradually identify things that were causing the swelling and problems swallowing. Based on lots of posts on this board, I first looked at soy because I was eating tons of that. Eliminating soy made a huge improvement. Eventually, I also added all legumes, all nuts, corn, dairy, canola and safflower oils, white potatoes and chicken. After the list was complete, other posts on this board helped me realized that all of these things contained lectins.

Based on what I read, this is an intolerance not an allergy. Supposedly, if I abstain 6 months to a year, the intolerance might subside. I haven't figured out if this is one intolerance or multiple intolerances. Nonetheless, I did try potato chips a couple of weeks ago and the reaction was greatly reduced. The first day, nothing happened. It wasn't until after eating chips 3 days in a row that there was a slight swelling in my neck.

The plan now is to abstain until January. Maybe by then, the intolerance will be gone. Bottom line though, if the intolerance(s) go away, I would fully expect them to come back if I ate too much for too long of any of the offenders. That appears to be what the info I've found indicates. Regardless, soy will be permanently out of my diet.

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Hi there,

Thanks for your feedback. This notion that soybean oil is tolerable to those with soy allergies is very recent, within the past year. This is a frightening "truth" sadly accepted by the medical community because that means pharmaceutical drugs could be made with soybean oil with the thought that it will be tolerable and deemed not to be allergenic. I had an anaphalactic attack because I was taking medication derived from soybean oil, and when I told the pharmacist that that is the reason, that I am allergic to soy including soy oil, he basically told me nonsense. Needless to say, I do not frequent his pharmacy anymore...

Interestingly enough, because I have a soy allergy, I had received a letter from a doctor who wanted to run tests for the FDA to see what was the lowest possible amount of soy I could tolerate and not react. This seemed very strange and very wrong to me. I replied and said that there was no way I could participate, less being literally crippled for a week and suffer from possible anaphalctic attacks - that I simpily cannot tolerate any miniscuple amount of soy whatsoever. We live in a very strange country. Whenever I go to Europe, my problems disappear. I don't think they use soy for anything over there, and are more aware of food issues and health. I think anything processed is more than likely to contaminated with soy. It's cheap and readily available. Food products, such as raisins, etc, can be coated with soy oil and not necessarily be included in the list of ingredients. I can't even tolerate regular toothpastes - I have to brush with baking soda. It's in every little thing.

When I avoid soy for a loooong time, I seem to be able to tolerate it later on. Now I know better. I simpily cannot expose myself to soy ever again, or else move to Europe - ha, ha, ha. I think the soy destroys the lining in the stomache and makes me intolerable to other foods.

Anyways, thanks for getting back to me - glad in a way that I'm not the only one suffering these weird going-ons.

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With my recently developed intols to soy, corn and dairy, I find that soy oil in particular causes immediate symptoms, and bad ones.

Unfortunately all of these foods seem to be in everything! I wonder how many women - because they are the ones who have been primarily urged to use it to combat meno symptoms and increase cardiac health - suffer more problems form soy than they are trying to fix?

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Food products, such as raisins, etc, can be coated with soy oil and not necessarily be included in the list of ingredients.

How is this legal? The labelling law requires disclosure of soy ingredients. How did you hear or know about the nondisclosed soy oil on food products?

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Is there such a thing as having a soy intolerance?

I cannot tolerate soy at all, besides of breaking out in hives et al, I get periods of extremely jitteriness/have had an anaphalactic attack (I'm sure my sp is off here...)/rapid heart beat/extreme digestive distress. The big key factor is that I react to soy oil, which apparently has now been determined that a reaction to soy oil is not an allergic reaction. I've asked my allergy doctor what the hell reaction am I having then, not in those words, and he just shrugged his shoulders and says it's something else I'm reacting to. I do not think so. I've gone through these extreme cycles where I can totally tolerate soy in any form whatsoever, as well as gluten when I wasn't aware of my intolerance to gluten, and then suddenly I can't tolerate it anymore and my diet gets extremely limited. The worst was the time when I could only tolerate meat and cooked vegetables, and nuts. Everything else I reacted to. An "allergy" that comes and goes doesn't seem to me to be an allergy.

Does anyone else experience the same as me? Has anyone been diagnosed with a soy intolerance? What type of doctor should I be seeing?

Help.

Yes, I believe you are right, given my very recent experience. I am a new member waiting for blood tests but I am doing this on my own. I am close to 50 and finally listening to my body. I am keeping a video journal, food journal. My diet is simple with fresh fruits/veggies/meats. For 2 days I have included soy, 8 0x 3 times a day. Symptoms of restless legs, abdominal cramps, loose bm's ( a new one for me) are plaguing me, that is why I am sitting here typing rather than sleeping. I have been misdiagnosed, with MS/IBS for 12 years. I had rashes as a kid in the 60's and the rashes returned about 4 weeks ago to FORCE me to look at my health and be less complacent about believing my MS/IBS diagnosis. My eyes have been dry/red for a long time, due to Vitamin A deficiency finding out by myself and reading Recognizing Celiac by Cleo Libonati. I have a long, long way to go to improve my leaking gut, but I have a daughter who I now is genetically predisposed. I have been on the phone with a second cousin in Quebec, who is in bad shape and was diagnosed with MS. He is getting my information to start looking into Celiac. I am also concerned about potatoes, lectins, BUT to make this right I will start with soy. I will let you all know. lynda lube, not giving up the fight and hope one day my villi will stand up and salute me!

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It is true that the FDA ruled that soy oil and lecithin - any item that the protein has been removed from - does not have to be listed on ingredients as an allergen. The major companies, though, like Kraft do seem to err on the side of caution and note all of it. And, of course, it still needs to be on the ingredient list (more on that later).

My ds is super crazy allergic to soy. All of it. Tiny amounts of soy lecithin are almost worse for him than drinking a cup of soymilk. Why this is, I cannot say. But I know more about soy and food processing now than I ever imagined, lol.

Soy, like wheat or any other ingredient, does NOT need to be listed on packaging if it's not considered added to the food and affecting nutritional value. So for example, candy canes can be manufactured in a mold/form that is sprayed with soy oil (like you might at home with Pam spray) to help them not stick. Soy will NOT be listed on the ingredients of these candy canes because they are not considered an ingredient or affecting nutritional value.

So then, you have to call the company and ask all these questions, and hope you get someone on the phone who understands what you're talking about. Sometimes I believe them, sometimes it's clear they have no idea.

Hth,

IME, soy is harder to avoid than gluten. it really IS everywhere!

Merika

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Well that stinks. Thanks for the heads up! I don't know that I react to lecithin. But items with soybean oil tend to be a problem for me, at least in the quantity where they list it as an ingredient.

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Soybean oil really bothers me a lot, too. I used to think I was gluten intolerant, but I've noticed nearly everything containing wheat also contains soybean oil (bread, buns, etc.)

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Hi,

Sorry to jump onto an old thread like this, but I stumbled on this doing research online concerning soy allergies. I've been having allergic reactions to something for years (coughing fits right after I eat). I narrowed it down to some sort of oil. In the last several months, the reactions have gotten much worse (still coughing, but added swelling in my throat, instant headache, dizziness, and tightness in my chest that can last for days) from much less of whatever it is.

I'm pretty sure I've narrowed it down to soybean oil, but the odd thing is, for years I've had this allergy to the oil, but I've been able to eat tofu and other soy products without an issue. What I'm wondering is if anyone knows whether since it's possible to be allergic to soy and not soybean oil, is it possible to be allergic to soybean oil and not soy? I'm seeing an allergist, but he's making me get poked by 200 needles for everything from tomatoes to mold before he'll even talk to me about what I'm experiencing. In the mean time, I keep reacting to food that's never bothered me before and I'm running out of things I can eat!

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Is there such a thing as having a soy intolerance?

I cannot tolerate soy at all, besides of breaking out in hives et al, I get periods of extremely jitteriness/have had an anaphalactic attack (I'm sure my sp is off here...)/rapid heart beat/extreme digestive distress. The big key factor is that I react to soy oil, which apparently has now been determined that a reaction to soy oil is not an allergic reaction. I've asked my allergy doctor what the hell reaction am I having then, not in those words, and he just shrugged his shoulders and says it's something else I'm reacting to. I do not think so. I've gone through these extreme cycles where I can totally tolerate soy in any form whatsoever, as well as gluten when I wasn't aware of my intolerance to gluten, and then suddenly I can't tolerate it anymore and my diet gets extremely limited. The worst was the time when I could only tolerate meat and cooked vegetables, and nuts. Everything else I reacted to. An "allergy" that comes and goes doesn't seem to me to be an allergy.

Does anyone else experience the same as me? Has anyone been diagnosed with a soy intolerance? What type of doctor should I be seeing?

Help.

I am very soy allergic as well as other allergies. I think you are getting periods where your intestines are healed and then when the insult comes again it is making you sick after several insults. Being Celiac is NOT fun at all as we all are so different, but this forum is awesome. I could not tolerate any soy at all for the longest time, but now I am starting to tolerate soybean oil, but still cannot tolerate soy lecithin or any other type of soy. I would try to avoid it if you can for 6-8 months and see if when you try to re-introduce it isn't better for you. If you still have problems then it probably is going to be something you will always need to avoid entirely. Soy allergies are very difficult because so many things have soy in them. Good luck...I hope things get better for you soon.

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I am very soy allergic as well as other allergies. I think you are getting periods where your intestines are healed and then when the insult comes again it is making you sick after several insults. Being Celiac is NOT fun at all as we all are so different, but this forum is awesome. I could not tolerate any soy at all for the longest time, but now I am starting to tolerate soybean oil, but still cannot tolerate soy lecithin or any other type of soy. I would try to avoid it if you can for 6-8 months and see if when you try to re-introduce it isn't better for you. If you still have problems then it probably is going to be something you will always need to avoid entirely. Soy allergies are very difficult because so many things have soy in them. Good luck...I hope things get better for you soon.

Actually, I re-read your email again and I am thinking that since you had anaphalactic reaction that you should just avoid soy and all soy products altogether. I get anaphalactic over wheat and I cannot imagine taking it in...I think I would just avoid the soy altogether. I'm sorry...I wish it were different for you.

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Hi,

Sorry to jump onto an old thread like this, but I stumbled on this doing research online concerning soy allergies. I've been having allergic reactions to something for years (coughing fits right after I eat). I narrowed it down to some sort of oil. In the last several months, the reactions have gotten much worse (still coughing, but added swelling in my throat, instant headache, dizziness, and tightness in my chest that can last for days) from much less of whatever it is.

I'm pretty sure I've narrowed it down to soybean oil, but the odd thing is, for years I've had this allergy to the oil, but I've been able to eat tofu and other soy products without an issue. What I'm wondering is if anyone knows whether since it's possible to be allergic to soy and not soybean oil, is it possible to be allergic to soybean oil and not soy? I'm seeing an allergist, but he's making me get poked by 200 needles for everything from tomatoes to mold before he'll even talk to me about what I'm experiencing. In the mean time, I keep reacting to food that's never bothered me before and I'm running out of things I can eat!

Hello Kfielder,

I actually am very allergic to soy, but can tolerate soybean oil, but no way can I tolerate soy lecithin. I don't understand it other than that maybe the soy oil is not as processed as soy lecithin? I really don't know. I have asked my allergist but am waiting for her response. I am totally confused about the soy thing too. I can tolerate soy oil in salad dressing, but if I eat just 3 M&M's with soy lecithin I am sick for 3-4 days and I mean sick sick. It'll be good for a 5 lb weight loss just over those few of M&M's. Our bodies are all so different, it's weird stuff! I hope we can get more people to respond to this one....:)

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Interesting that you can tolerate soy oil but not soy lecithin. I have definitely had to eliminate all soy oil (salad dressings, fried foods, margarine and mayo) and soy lecithin or it causes chronic fatigue, achy joints, edema and other symptoms. I also have skin problems if I use lotions and hair products with soy. Now that my daughter has been diagnosed with Celiac I

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I'm the oppisite. I react to soy drink but not to soy lecithin. Gave up soy oil because my DD reacts to it. Positive for allergy to soy in Feb.? "09

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Hello Kfielder,

I actually am very allergic to soy, but can tolerate soybean oil, but no way can I tolerate soy lecithin. I don't understand it other than that maybe the soy oil is not as processed as soy lecithin? I really don't know. I have asked my allergist but am waiting for her response. I am totally confused about the soy thing too. I can tolerate soy oil in salad dressing, but if I eat just 3 M&M's with soy lecithin I am sick for 3-4 days and I mean sick sick. It'll be good for a 5 lb weight loss just over those few of M&M's. Our bodies are all so different, it's weird stuff! I hope we can get more people to respond to this one....:)

Oils, because of the way they are processed, do not contain the offending allergenic protein. In theory, one should be able to tolerate soy oil when they are allergic to soy, or peanut oil when they are allergic to peanut.

The problem is with cross-contamination. You just can't ensure that the oil has not come into contact with the unprocessed proteins, so, for those with serious allergies, avoidance is a must.

Michelle

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Oils, because of the way they are processed, do not contain the offending allergenic protein. In theory, one should be able to tolerate soy oil when they are allergic to soy, or peanut oil when they are allergic to peanut.

The problem is with cross-contamination. You just can't ensure that the oil has not come into contact with the unprocessed proteins, so, for those with serious allergies, avoidance is a must.

Michelle

Hi Michelle, Thank you so much for your response. So far, I've been ok with the oil and have never had any disruption from it. But, the only oil I consume is Kraft salad dressing and vegetable oil (same brands each time). I do not trust all companies and maybe that is why it is has been ok so far...dunno. Do you know whether or not you have to have symptoms to do damage? In other words, can the oil be damaging if I don't have symptoms. Everything for me has finally normalized and am living very comfortably at the moment. But, I must say, I went through 8 months of being very ill. Right now, I have gained weight, blood work is getting much better now, normal everything now. I just don't know if I'm damaging the villi with the oil. It seems like if the oil were doing damage that I would have loose stools or something like that..dunno? Thanks so much for your input.

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I am intolerant to soy in all its forms. Well, to be honest I don't give the oil a fair try because as soon as I see the word "soy" now I run, but definitely cannot do soy lecithin. Soy gives me urticaria and I am so tired of itching, what with the psoriasis and all :(

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I am intolerant to soy in all its forms. Well, to be honest I don't give the oil a fair try because as soon as I see the word "soy" now I run, but definitely cannot do soy lecithin. Soy gives me urticaria and I am so tired of itching, what with the psoriasis and all :(

Hello, I was extremely intolerant of all soy for about 6-8 months...now I am finding I can tolerate the oil very well with no symptoms whasoever and have normal everything if you know what I mean. But, soy lecithin tears me up! I hate being sick like that it is so terrible it will last for several days and amounts to a 5-10 lbs weight loss. Do you ever get symptomatic even when you have not been contaminated? Does anyone ever get sick just from stress being a trigger? I hope, in time, you feel better and get to where you might be able to tolerate soybean oil because that would open alot of options for you. I think alot it is just getting detoxed...the detox from this disease is horrible or at least it was for me. I lost 20 lbs and got very weak, but I have gained my weight and strength back and am now raising my one year old grandchild whom also is celiac. You might try adding some extra B vitamins as I have found that helps alot with the skin issues and so does fish oils and blue green algae...all of which I take.

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What's really got me on the soy and pharmaceutical companies is that soy isn

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What's really got me on the soy and pharmaceutical companies is that soy isn
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Just to let you know, I just received an email reply from Helmann's responding that their Canola Mayo that does not list soy as an ingredient, actually contains soy (natural flavoring.) I wrote them because I had used it twice and had a reaction both times. I have also heard that canned and bottled lemonades have soy (also listed as natural flavorings.) So the real question, is not only how can we avoid it, but how could anyone actually pinpoint soy as the problem? So frustrating.

I am very soy allergic as well as other allergies. I think you are getting periods where your intestines are healed and then when the insult comes again it is making you sick after several insults. Being Celiac is NOT fun at all as we all are so different, but this forum is awesome. I could not tolerate any soy at all for the longest time, but now I am starting to tolerate soybean oil, but still cannot tolerate soy lecithin or any other type of soy. I would try to avoid it if you can for 6-8 months and see if when you try to re-introduce it isn't better for you. If you still have problems then it probably is going to be something you will always need to avoid entirely. Soy allergies are very difficult because so many things have soy in them. Good luck...I hope things get better for you soon.
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    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
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