Quote from: CMdeux on November 07, 2013, 10:59:06 AM
I recommend CALLING on any product that you intend to use if you want to try avoiding soy-derived ingredients.

It will probably prove impossible to eat/avoid otherwise, unfortunately-- because so many (highly refined) soy-derived ingredients are used as processing agents and aren't disclosed otherwise.

My personal strategy would be to simplify what I eat/have contact with to ONLY those things that I have called and feel sure don't contain those derivatives, and trial that lifestyle for a few weeks, journaling whether or not symptoms worsen/abate, and then add derivatives back in slowly, one at a time, to determine whether or not there is any impact. 

Also, be aware that some symptoms can very easily be elicited via placebo effect here.

  The joint and other autoimmune symptoms that you mention are far more typical of celiac than of food allergy-- I'm assuming that with a possible wheat allergy, you've been thoroughly evaluated for celiac, but I'm mentioning that just in case.  IBS-type symptoms + RA makes me VERY suspicious, however.

It would be very unusual for someone with an IgE-mediated soy allergy to have such sensitivity without also having very severe responses to the allergen (that is, anaphylaxis).  I definitely have experienced IBS-like symptoms to some foods, but that kind of symptom package is really mild compared to anaphylactic responses to an allergen-- it's a little tough to say which is which when discussing symptoms, because it's really more a matter of degree, if that makes sense.

Soy is in SO many things, though-- it is really hard to avoid successfully.  Do you have the ability to live a super-modified lifestyle for a few weeks to try it?  It literally means no prepackaged anything, more or less.

Hi CMdeux,
Yes, I can live a modified lifestyle. I have not knowingly had grains for at least 3 months. The only place where I might be getting exposure to soy/ wheat at this point is in toothpaste, medications, mouthwash, and the like. I have been checked for celiac and told I do not have it.

Quote from: CMdeux on November 07, 2013, 11:27:40 AM
Oh-- you're probably wondering why I keep referring you back to your physician for specific advice about avoidance and what LEVEL of avoidance you ought to be trying...

well, the reason for that is complicated, but basically, there is increasingly overwhelming evidence that avoidance BEYOND what is needed to avoid major reactions (that is, assuming IgE-mediated reactivity) tends to prime the individual for more SEVERE responses to LOWER doses of the allergen.

In other words, avoiding something that you tolerate simply because of a desire to practice "complete avoidance"  MAY not be a good idea in the long run.   If you have an IgE-mediated food allergy to that thing, that is.  Different conditions there require different management (which is why it is super-super important to be clear on what the underlying cause of food-related symptoms is). 

On the other hand, if you feel better when you avoid something, and your quality of life is improved through that avoidance, then it's probably worth it-- at least as long as you can successfully avoid small triggering doses of the allergen, that is, and aren't in the process of avoiding actually enhancing your risk of fatality...

  With soy and wheat, that is notoriously difficult, and often is only possible with a highly restricted/modified lifestyle-- one thing if you are risk of death if you don't do it...  but NEVER eating in a restaurant, NEVER traveling, NEVER trusting anyone else to prepare your food, NEVER eating/using anything you haven't made a twenty to forty minute phone call about (and calling about every two to four months to double check for changes)... well.  That gets to be a real drag in a hurry. 

The risk of "trying" that for a while (months, usually) is that you may not be able to go back to a more lax management style if you're dealing with an anaphylaxis trigger, because you may have inadvertently reduced your threshold dose with that kind of avoidance in the meantime. 

That's why I'm cautioning you to be sure that you SHOULD avoid those things, and to keep careful, careful notes as you experiment with different products. 

Has your allergist expressed any willingness to challenge wheat or soy under medical supervision?  At least if you knew that the responses to those were non-IgE mediated, you could experiment with different avoidance strategies without worry about the threshold thing.  If they are likely to be IgE-mediated (and test results alone don't tend to mean much, unfortunately) then you probably ought to discuss epinephrine with your allergist.    Be sure to take a look at our Welcome Info page(s)-- particularly the link there, which provides a handy guide to allergic reaction symptoms.    Have you been evaluated for EE?  I ask because of the mention of mast cells and the Gastrocrom rx; that's not really a standard food allergy treatment, but it can help a LOT with EE and related eosinophilic disorders. 

My DH has an atypical soy protein allergy (and has since childhood).  He has to avoid concentrated forms of soy, and has trouble with some refined soy products (but not all).  It can be highly individual, we've found.  Soy oils are far worse for him personally than fermented products like soy sauce.    He can actually use tiny amounts of soy sauce... but can't tolerate movie theater popcorn, a particular brand of chicken breast tenders, or the soy additive in a local pizzeria's crust.  It's weird.  If he gets dosed, he very definitely has IgE-mediated responses-- vomiting, diarrhea (and I mean.... THE BIG D... like I'm.going.to.just.throw.those.pants.away.now.and.oh.yeah.we.need.to.burn.that.chair diarrhea... like I said, a matter of degree, this one) and cutaneous symptoms likes hives.

Hi CMdeux,
Thanks again for a really thoughtful response. It is too bad the doctors are not this forthcoming.  Anyway, to be clear, I tested negative on a blood test for IGE. Though you say those tests are not reliable?
I sympathize with your DH's diarrhea. That is a miserable way to live. What is EE? Do allergists test for this?
In terms of challenges, my allergies/ sensitivities will not cause me a breathing problem. Sometimes it can be a few days after I eat something before digestive symptoms really kick in full force. I am getting better at detecting early symptoms of foods causing me trouble. Ie, I may have an issue with cantaloupe. Your comments about trying to live a long term soy/ wheat free lifestyle are getting me concerned. I  like to travel and will need to do that for work over the next few years.  It would be good to know how much if any soy/ wheat I can have without producing symptoms. I am wondering do you ever hear of people trying to go say 90 days free of an allergen and then just eating it in small amounts rarely and not suffering symptoms?

Quote from: rebekahc on November 07, 2013, 11:32:06 AM
You might also do some reading down in the Other Health section of this board.  Nameless and I both have Vit D deficiency that, once treated, helped our digestive and joint issues.  I'll see if I can find the discussion and link it here for you...

Here's where I mention it and link to our discussion at our former site: Re: Menorrhagia/Menometrorrhagia  Unfortunately, that discussion was in a members-only section of the board.

I won't quote the posts of others since the discussion is in a members-only area of that old forum, but here's what I said:

QuoteI went ahead and played around with taking the D3. I found that my chronic loose stools/diarrhea was caused by Vit. D deficiency! I'm pretty sensitive GI-wise to my D levels - too much I'm constipated, too little I've got the other issue. For me, I found taking 5000IU D3 capsules alternating 2 capsules one day and 1 the next kept everything just right. After treating myself that way for about 3.5 months, I went to the doctor for my regular physical and told him what I was doing and he was totally on board with it. My bloodwork revealed a severe D2 deficiency - my level was <4, but my D3 levels were right in the middle of the normal range as a result of my self-therapy. My Dr. said not to worry about my D2 levels since my body would convert D2 to D3 anyway.

I have noticed since early June that I'm needing much less D3 (around one capsule a week plus whatever's in my calcium suppliment) not sure if it's because of getting more sun (though I don't think I'm getting that much more) or if I'm over the deficiency and just need a small maintenance dose. <shrug> I guess it doesn't really matter one way or the other as long as my symptoms are gone.

I've also been taking dissolve under the tongue B12 supplements.

Several months later, I'm feeling pretty good - I'm not nearly as tired as was usual before and I'm hardly having migraines. My joint pain/swelling from psoriatic arthritis has also been much better.

Nameless confirmed that her GI issues and migraines had been helped by the Vit D.

Hi Rebekah,
That is interesting. I take 2000 IU of Vitamin D3 daily and have done so for years. I am not sure if I have been tested recently. I will check. I am glad to hear that you are doing much better. That gives me hope!

You might also do some reading down in the Other Health section of this board.  Nameless and I both have Vit D deficiency that, once treated, helped our digestive and joint issues.  I'll see if I can find the discussion and link it here for you...

Here's where I mention it and link to our discussion at our former site: Re: Menorrhagia/Menometrorrhagia  Unfortunately, that discussion was in a members-only section of the board.

I won't quote the posts of others since the discussion is in a members-only area of that old forum, but here's what I said:

QuoteI went ahead and played around with taking the D3. I found that my chronic loose stools/diarrhea was caused by Vit. D deficiency! I'm pretty sensitive GI-wise to my D levels - too much I'm constipated, too little I've got the other issue. For me, I found taking 5000IU D3 capsules alternating 2 capsules one day and 1 the next kept everything just right. After treating myself that way for about 3.5 months, I went to the doctor for my regular physical and told him what I was doing and he was totally on board with it. My bloodwork revealed a severe D2 deficiency - my level was <4, but my D3 levels were right in the middle of the normal range as a result of my self-therapy. My Dr. said not to worry about my D2 levels since my body would convert D2 to D3 anyway.

I have noticed since early June that I'm needing much less D3 (around one capsule a week plus whatever's in my calcium suppliment) not sure if it's because of getting more sun (though I don't think I'm getting that much more) or if I'm over the deficiency and just need a small maintenance dose. <shrug> I guess it doesn't really matter one way or the other as long as my symptoms are gone.

I've also been taking dissolve under the tongue B12 supplements.

Several months later, I'm feeling pretty good - I'm not nearly as tired as was usual before and I'm hardly having migraines. My joint pain/swelling from psoriatic arthritis has also been much better.

Nameless confirmed that her GI issues and migraines had been helped by the Vit D.

Oh-- you're probably wondering why I keep referring you back to your physician for specific advice about avoidance and what LEVEL of avoidance you ought to be trying...

well, the reason for that is complicated, but basically, there is increasingly overwhelming evidence that avoidance BEYOND what is needed to avoid major reactions (that is, assuming IgE-mediated reactivity) tends to prime the individual for more SEVERE responses to LOWER doses of the allergen.

In other words, avoiding something that you tolerate simply because of a desire to practice "complete avoidance"  MAY not be a good idea in the long run.   If you have an IgE-mediated food allergy to that thing, that is.  Different conditions there require different management (which is why it is super-super important to be clear on what the underlying cause of food-related symptoms is). 

On the other hand, if you feel better when you avoid something, and your quality of life is improved through that avoidance, then it's probably worth it-- at least as long as you can successfully avoid small triggering doses of the allergen, that is, and aren't in the process of avoiding actually enhancing your risk of fatality...

  With soy and wheat, that is notoriously difficult, and often is only possible with a highly restricted/modified lifestyle-- one thing if you are risk of death if you don't do it...  but NEVER eating in a restaurant, NEVER traveling, NEVER trusting anyone else to prepare your food, NEVER eating/using anything you haven't made a twenty to forty minute phone call about (and calling about every two to four months to double check for changes)... well.  That gets to be a real drag in a hurry. 

The risk of "trying" that for a while (months, usually) is that you may not be able to go back to a more lax management style if you're dealing with an anaphylaxis trigger, because you may have inadvertently reduced your threshold dose with that kind of avoidance in the meantime. 

That's why I'm cautioning you to be sure that you SHOULD avoid those things, and to keep careful, careful notes as you experiment with different products. 

Has your allergist expressed any willingness to challenge wheat or soy under medical supervision?  At least if you knew that the responses to those were non-IgE mediated, you could experiment with different avoidance strategies without worry about the threshold thing.  If they are likely to be IgE-mediated (and test results alone don't tend to mean much, unfortunately) then you probably ought to discuss epinephrine with your allergist.    Be sure to take a look at our Welcome Info page(s)-- particularly the link there, which provides a handy guide to allergic reaction symptoms.    Have you been evaluated for EE?  I ask because of the mention of mast cells and the Gastrocrom rx; that's not really a standard food allergy treatment, but it can help a LOT with EE and related eosinophilic disorders. 

My DH has an atypical soy protein allergy (and has since childhood).  He has to avoid concentrated forms of soy, and has trouble with some refined soy products (but not all).  It can be highly individual, we've found.  Soy oils are far worse for him personally than fermented products like soy sauce.    He can actually use tiny amounts of soy sauce... but can't tolerate movie theater popcorn, a particular brand of chicken breast tenders, or the soy additive in a local pizzeria's crust.  It's weird.  If he gets dosed, he very definitely has IgE-mediated responses-- vomiting, diarrhea (and I mean.... THE BIG D... like I'm.going.to.just.throw.those.pants.away.now.and.oh.yeah.we.need.to.burn.that.chair diarrhea... like I said, a matter of degree, this one) and cutaneous symptoms likes hives. 

I recommend CALLING on any product that you intend to use if you want to try avoiding soy-derived ingredients.

It will probably prove impossible to eat/avoid otherwise, unfortunately-- because so many (highly refined) soy-derived ingredients are used as processing agents and aren't disclosed otherwise.

My personal strategy would be to simplify what I eat/have contact with to ONLY those things that I have called and feel sure don't contain those derivatives, and trial that lifestyle for a few weeks, journaling whether or not symptoms worsen/abate, and then add derivatives back in slowly, one at a time, to determine whether or not there is any impact. 

Also, be aware that some symptoms can very easily be elicited via placebo effect here.

  The joint and other autoimmune symptoms that you mention are far more typical of celiac than of food allergy-- I'm assuming that with a possible wheat allergy, you've been thoroughly evaluated for celiac, but I'm mentioning that just in case.  IBS-type symptoms + RA makes me VERY suspicious, however.

It would be very unusual for someone with an IgE-mediated soy allergy to have such sensitivity without also having very severe responses to the allergen (that is, anaphylaxis).  I definitely have experienced IBS-like symptoms to some foods, but that kind of symptom package is really mild compared to anaphylactic responses to an allergen-- it's a little tough to say which is which when discussing symptoms, because it's really more a matter of degree, if that makes sense.

Soy is in SO many things, though-- it is really hard to avoid successfully.  Do you have the ability to live a super-modified lifestyle for a few weeks to try it?  It literally means no prepackaged anything, more or less.

I like LouAnna brand (can find in the shortening areas) for lotion and lips.  It tends to feel a bit like lard but it does the trick on my crazy skin.  Spectrum has coconut oil as well that is organic - that is the tasty one   I need to keep my body lotion needs seperate from the cooking end of things.

Both are on shared peanut lines - not sure if that applies to you or not.

Thanks Youknowwho. Do you use a particular brand or type of coconut oil for your lips or just the oil sold for cooking?

As far as moisturizers, just plain coconut oil works well.  It does a good job for lips as well but depending on the brand can be tasty which leads to bigger issues for me (constant lip licking leads to bigger issues with chapped lips).  I tend to just stick to vaseline on the lips.

No help on the others as we are avoiding other allergens.

Hi CMdeux,
Thanks for a thoughtful reply. Please let me give you some background. I was tested using IGE blood test and skin pricks. I was negative on the IGE but got bumps from the skin pricks. Soy is far and away my biggest problem though wheat is an issue as well. In terms of my reactions, if I consume soy even in small amounts, I get bloating, loose stool/ diarrhea, bowel incontinence, acid stomach. I have other symptoms that have been diagnosed as auto immune in origin (dry eye, joint arthritis, Raynaud's symptoms, bladder urgency/ incontinence), which I am suspicious may be caused by food. I have noticed that each time I remove a source soy from my diet my symptoms will drop off a bit after a few days. For example, I had been drinking a coconut "beverage" that included guar  gum as an ingredient.  A few days after switching to pure coconut milk I noticed that my digestive symptoms calmed down a bit.

I should mention that my symptoms are not as intense as those suffered by others on the forum. However, my joint and digestive symptoms have been chronic and have been worsening over the years. The autoimmune symptoms have been building since at least 1989.

I am seeing a board certified allergist. She prescribed Gastocrom to desensitize mast cells. I have not been on it long enough to see if it will work for me. Unfortunately, I did not get much explanation from her as to lifestyle changes. I had said at the appointment with the allergist that  I wanted to cut soy out of my life as quickly as possible so I can put these symptoms behind me and move on with my life. So she may have not felt it necessary to advise.

Based on the above what do you recommend?

I wish to remove all wheat, soy and potentially soy derived products (like vegetable protein, glycerine, xanthan gum, and guar gum)

Okay-- but-- do you NEED to do that?

Many of those things contain such tiny amounts of protein that they truly are not a problem for all but the most sensitive individuals who are allergic to them-- that is, those who have the lowest thresholds.

Living completely free of soy is hard enough even if you don't choose to also avoid all derivatives.

Remember, most current advice re: food allergy management is to avoid to the level that avoids major reactions.

What has your doctor recommended there?  Should you be avoiding things that have never caused you a problem in the past?  If so, why?

Have you got a board-certified allergist working with you?  If so, it might be helpful for us here to know what kind of reaction history you have, and how you were diagnosed with your food allergies.

Hi everybody,
I am new to the forum and have a couple questions.  I am allergic to soy and wheat. I wish to remove all wheat, soy and potentially soy derived products (like vegetable protein, glycerine, xanthan gum, and guar gum) from my life. To that end, can anyone recommend wheat and soy-free:
•   Toothpastes that have fluoride
•   Chapstick type products
•   Sunblocks

Thank you all!
Neil