Hi, all! A year and a half after my CC diagnosis, I finally had an appointment three weeks ago with an allergist. I asked for complete testing, to cover all the bases. I had been referred there after a reaction to sulfasalazine (my mouth went numb and my tongue swelled to twice it's normal size). It turned out I'm allergic to crab and shrimp (I knew that from previous reactions), dust mites, black mold, and soybeans! The soy was a surprise to me, because I hadn't had an obvious reaction to it in the past. So I went home and started reading ingredient labels on all my food and toiletries...soy is in practically everything! I had to give away most of the GF mixes (cake, bread, pancake, etc.), some spaghetti sauce, crackers, Noxzema...the list goes on. Then I went to the grocery store to just read labels, and got very depressed. Soy really is in practically everything.
One thing I've been fine with in the past is Chex cereal. I'd been having the gluten-free store generic "rice biscuits" with no reaction, and Corn Chex are fine too. Yesterday I opened a new box of Rice Chex (the name brand) and couldn't figure out why my mouth and hands felt numb after I ate. I thought it was maybe the coconut milk or my calcium or magnesium tablets I take after breakfast. (I had to stop taking multivitamins with breakfast, because every single one has soy in the form of Vitamin E tocopherols.) I repeated the same meal today without taking the calcium or magnesium, and still was numb. Then I read the ingredient label on the Rice Chex...Vitamin E tocopherols added! This is depressing.
So I'll switch back to my generic rice biscuits with no vitamin E, but does anyone know if there is a multivitamin without it that we can take? Or is it safe for us to go without vitamin supplements, especially because we have such limited diets? What do you all normally take?
Thanks!
Pat
Soy allergy
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Soy allergy
Pat C.
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
Hi Pat,
I just yesterday emailed General Mills in regards to their Rice Chex and the tocopherols that are in it. I read on a Celiac website (can't remember which one) that their Tocoperols were derived from corn but waiting to hear back from them on whether I believe that or not. I could have sworn that another person on this forum eats Rice Chex and has a soy intolerance but doesn't have issue with it. I will let you know what response I get.
My B-complex with C from Nature Made is GF/DF with no Tocopherals in it. That's all I feel I need to take for now along with my Vitamin D which I just changed to VD3 with Lanolin as my other one has soybean oil in it.
There is a list of ingredients on this forum that contains hidden soy in it. I'd have to take that to the store with me! A lot of weird ingredients on it! I do still eat GF bread....don't think mine has soy in it but now thinking I need to go recheck. I'm pretty sure the Quinoa/corn pasta I eat doesn't.
Terri
I just yesterday emailed General Mills in regards to their Rice Chex and the tocopherols that are in it. I read on a Celiac website (can't remember which one) that their Tocoperols were derived from corn but waiting to hear back from them on whether I believe that or not. I could have sworn that another person on this forum eats Rice Chex and has a soy intolerance but doesn't have issue with it. I will let you know what response I get.
My B-complex with C from Nature Made is GF/DF with no Tocopherals in it. That's all I feel I need to take for now along with my Vitamin D which I just changed to VD3 with Lanolin as my other one has soybean oil in it.
There is a list of ingredients on this forum that contains hidden soy in it. I'd have to take that to the store with me! A lot of weird ingredients on it! I do still eat GF bread....don't think mine has soy in it but now thinking I need to go recheck. I'm pretty sure the Quinoa/corn pasta I eat doesn't.
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Pat,
I agree that soy is one of the biggest problems with processed foods and pharmaceuticals. As you say, it's in almost everything, in one form or another. I'm lucky in that I don't seem to react to it (so far), but I still try to avoid it to the extent possible. Soy is a major problem with our food supply, and the problem can only become worse, as more and more people become sensitive to it.
At least you were able to track down the problem, but as you have found, avoiding it is really tough to do.
Good luck with fine-tuning your diet.
Tex
I agree that soy is one of the biggest problems with processed foods and pharmaceuticals. As you say, it's in almost everything, in one form or another. I'm lucky in that I don't seem to react to it (so far), but I still try to avoid it to the extent possible. Soy is a major problem with our food supply, and the problem can only become worse, as more and more people become sensitive to it.
At least you were able to track down the problem, but as you have found, avoiding it is really tough to do.
Good luck with fine-tuning your diet.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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wmonique2
- Rockhopper Penguin
- Posts: 1048
- Joined: Fri Aug 03, 2012 9:06 am
- Location: Georgia, U.S
- Contact:
soy allergy
Hey everyone,
I found out this month that I am allergic to soy and it is proving to be a BIGGER problem that gluten. I am stunned as where I find it. I just emptied my pantry from tuna packed in soy and various other things. As Pat said, it's everywhere.
BTW, tocopherols are NOT always derived from soy so we have to ask. I called Crest to ask if they had soy or gluten in their toothpaste and they said that none of the Crest products had it. I found a company that produces lipstick without gluten and soy (their tocopherols are from another source).
Terri,
Tex has a link for soy products and the various names it comes under. Maybe he can provide it again....
Life has just gotten a whole lot more complicated. Forget about EVER eating out again ;-) I went to a restaurant 10 days ago and brown-bagged. I had a small salad (I haven't had a salad in months) and paid for it a couple of days later. Everything either had gluten or soy. I didn't want to drive the waiters crazy so I just ate the bloody salad knowing the potential dangers...
Love,
Monique
I found out this month that I am allergic to soy and it is proving to be a BIGGER problem that gluten. I am stunned as where I find it. I just emptied my pantry from tuna packed in soy and various other things. As Pat said, it's everywhere.
BTW, tocopherols are NOT always derived from soy so we have to ask. I called Crest to ask if they had soy or gluten in their toothpaste and they said that none of the Crest products had it. I found a company that produces lipstick without gluten and soy (their tocopherols are from another source).
Terri,
Tex has a link for soy products and the various names it comes under. Maybe he can provide it again....
Life has just gotten a whole lot more complicated. Forget about EVER eating out again ;-) I went to a restaurant 10 days ago and brown-bagged. I had a small salad (I haven't had a salad in months) and paid for it a couple of days later. Everything either had gluten or soy. I didn't want to drive the waiters crazy so I just ate the bloody salad knowing the potential dangers...
Love,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Good news about Rice chex!! Their Tocopherals are derived from Corn. Just got an email from them. Maybe the BHT in it is a problem?
Yes, got an ingredient soy list from Tex. The list was overwhelming to me.
Sorry about the salad, Monique....so frustrating. Guess I will have to hold off on that for a very, very long time.
@Monique....I ended up emailing Revlon since I use only their lipstick. they have yet to get back with me. What brand did you find to use?
Terri
Yes, got an ingredient soy list from Tex. The list was overwhelming to me.
Sorry about the salad, Monique....so frustrating. Guess I will have to hold off on that for a very, very long time.
@Monique....I ended up emailing Revlon since I use only their lipstick. they have yet to get back with me. What brand did you find to use?
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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wmonique2
- Rockhopper Penguin
- Posts: 1048
- Joined: Fri Aug 03, 2012 9:06 am
- Location: Georgia, U.S
- Contact:
soy allergy
Hey Terry,
The brand online I found is Red Apple lipstick (redapplelipstick.com). They seem to have good choice of colors. Dept store prices, not drug store about $20-25. I haven't ordered yet... Let me know what Revlon says, maybe we can have at drugstore prices, doubt it though...
thanks,
Monique
The brand online I found is Red Apple lipstick (redapplelipstick.com). They seem to have good choice of colors. Dept store prices, not drug store about $20-25. I haven't ordered yet... Let me know what Revlon says, maybe we can have at drugstore prices, doubt it though...
thanks,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Hi All,
You can find lists for all of the main food sensitivities here:
Foods And Food Ingredients That Should Be Avoided
And here's a combined list that includes all the ingredients made from gluten, dairy, soy, and corn:
Jean's Combined List of Gluten, Dairy, Soy and Corn Sources
Tex
You can find lists for all of the main food sensitivities here:
Foods And Food Ingredients That Should Be Avoided
And here's a combined list that includes all the ingredients made from gluten, dairy, soy, and corn:
Jean's Combined List of Gluten, Dairy, Soy and Corn Sources
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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wmonique2
- Rockhopper Penguin
- Posts: 1048
- Joined: Fri Aug 03, 2012 9:06 am
- Location: Georgia, U.S
- Contact:
soy allergy
Thanks, Tex.
You continue to wow us with your resourcefulness...
I hope that you're retired and have plenty of time of your hands to answer each one of us... I can see where an avocation can turn into a vocation sometimes...
Love,
Monique
You continue to wow us with your resourcefulness...
I hope that you're retired and have plenty of time of your hands to answer each one of us... I can see where an avocation can turn into a vocation sometimes...
Love,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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wmonique2
- Rockhopper Penguin
- Posts: 1048
- Joined: Fri Aug 03, 2012 9:06 am
- Location: Georgia, U.S
- Contact:
soy allergy
Leah,
Yes, will keep you posted on any new products we find...
Also, on another topic....I have been on entocort for over 4 months, I am taking only one a day, excerpt that I am also taking mesalamine...
yesterday I started weaning off the last entocort I am taking. I think you were taking one every other day. How long did you do it? Or did you reduce to one every 3 days first?
Thanks, Leah.
Monique
Yes, will keep you posted on any new products we find...
Also, on another topic....I have been on entocort for over 4 months, I am taking only one a day, excerpt that I am also taking mesalamine...
yesterday I started weaning off the last entocort I am taking. I think you were taking one every other day. How long did you do it? Or did you reduce to one every 3 days first?
Thanks, Leah.
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Thanks, everybody! Terri, maybe it's the BHT in the packaging, but something in those Rice Chex definitely affects me. Monique, you and I are in the same boat. I just realized that my glycerine soap may be derived from soy also. I'll go back to Dove. I stay away from lipsticks and cosmetics, because everything seems to irritate my skin. I just use Vaseline for my lips and California Baby or Aveeno Ultra Calming lotion for my face. And thanks, Tex, for the link to the soy-containing ingredient list!
Pat
Pat
Pat C.
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Pat and Monique
my heart goes out to you both, living 'soy free' is not easy. I have been soy free for over 2 years.
for me, i react worse to soy than gluten, so hence why I dont really eat out that much as it is hardest ingredient to protect myself against in the cafe/restuarant environment. I have eaten out twice in the past 12 months.
it took me about 12 months to totally elminate the soy and to find good quality soy free products, not just eating wise but for external as well
some good hints
- i use coconut soap or goats milk soap from the health food shop
- i use coconut oil /lanolin for my skin
- rosehip oil for my face
- lanolin lip balm
- white clay or green clay powder that i mix with water as a facial
If i go to have a pedicure, i take my own products with me.
I have managed to find a foundation where the soy is one of the last ingredients. If i cant find soy free, i buy the product where the name for soy is the lowest on the list.
Use the web and check ingredient lists for products and email manufacturers. dont be surprised if some do not reply OR are not able to confirm, the reason for this is that they bulk buy ingredients like Vit E from distributers. no one knows how much soy is in the batch, and they dont have to track it. generally, all they know is if the Vit E is plant origin.
I have the list of names that soy is known as printed, and carry it in my wallet, I now carry extra copies as the people that run the health food shop were interested so i gave them a copy! and another customer heard us talking and also wanted a copy. (all part of my 'soy is evil' campaign)
I am lucky that at my pharmacy they have another patient who is reactive to soy, they are very pro-active about checking tech sheets for products (as the information is generally inside the sealed box!)
take a deep breath and be armed and ready to defend yourself against evil soy!
my heart goes out to you both, living 'soy free' is not easy. I have been soy free for over 2 years.
for me, i react worse to soy than gluten, so hence why I dont really eat out that much as it is hardest ingredient to protect myself against in the cafe/restuarant environment. I have eaten out twice in the past 12 months.
it took me about 12 months to totally elminate the soy and to find good quality soy free products, not just eating wise but for external as well
some good hints
- i use coconut soap or goats milk soap from the health food shop
- i use coconut oil /lanolin for my skin
- rosehip oil for my face
- lanolin lip balm
- white clay or green clay powder that i mix with water as a facial
If i go to have a pedicure, i take my own products with me.
I have managed to find a foundation where the soy is one of the last ingredients. If i cant find soy free, i buy the product where the name for soy is the lowest on the list.
Use the web and check ingredient lists for products and email manufacturers. dont be surprised if some do not reply OR are not able to confirm, the reason for this is that they bulk buy ingredients like Vit E from distributers. no one knows how much soy is in the batch, and they dont have to track it. generally, all they know is if the Vit E is plant origin.
I have the list of names that soy is known as printed, and carry it in my wallet, I now carry extra copies as the people that run the health food shop were interested so i gave them a copy! and another customer heard us talking and also wanted a copy. (all part of my 'soy is evil' campaign)
I am lucky that at my pharmacy they have another patient who is reactive to soy, they are very pro-active about checking tech sheets for products (as the information is generally inside the sealed box!)
take a deep breath and be armed and ready to defend yourself against evil soy!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
@Monique....I just heard back from Revlon and they can't guarantee their lipsticks are GF because of the handling and processing. Nothing new there. I'm a lipstick gal....must have it. Will check into the Red Apple Lipstick....just something else for my Christmas list...yay! I only wear 3 colors so no big deal I guess.
I don't know if I react to soy or not but if I find out I do, that just may send me over the edge!
Terri
I don't know if I react to soy or not but if I find out I do, that just may send me over the edge!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Re: soy allergy
Oh Monique - please are you kidding??:sad: I never even for a second imagined lipstick has gluten in it??? Not good news for me as I love my lippy! Will start researching now as I will be going GF after my endoscopy - about 22 Nov all going well!! Still silver linings and all that, the perfect excuse to buy new lippy! Life's not so bad, except the gut pain, BMs etc etc!wmonique2 wrote: I found a company that produces lipstick without gluten and soy (their tocopherols are from another source).
Yep...good excuse for new lipstick! I had to give up my Aveeno body wash as it has wheat starch and oats in it. Though I thought you had to ingest gluten to get a reaction. I don't get skin irritations or rashes. I mean really, do I need to give up my Aveeno!? And to top off that....I read that if I share my toothpaste with someone who eats gluten (my hubby for example), then I need to have my own toothpaste. Jeez Louise!!
Terri
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.