Please Read - No Celiacs Can Have Soy!

[srokie]

I think you were right to post the information. I just think some of it got lost in translation so to speak. I have a feeling that if we had all read something that your doctor wrote herself, reactions here would be quite different. If she's written any articles or anything I'd sure be interested in reading them.

It's funny because there are some celiacs out there who remain symptomatic, yet don't want to explore options beyond a mainstream gluten-free diet . Furthermore, I do believe firmly in the dangers of cc, but wonder if some people are sometimes reacting to things such as soy when they blame cc for their problems (I eventually cut out soy, but when I was eating it every day my reactions were very random - it was easy to assume I got "glutened" on days I got "soyed") Anyway...I guess I'm just kind of rambling here...so hopefully we'll get more information on this soon.

I ramble all the time... feel free to go on

My mom has a roommate who is a doctor, and he never believed the soy part of my diagnosis. I don't think Dr. Saviano has written any articles, but I will check on that.

[srokie]

Yes, sorry to both Chrissy and Ashley for inadvertently putting the wrong name in there. But yes, Ashley, please do forward my info on to your doctor and see what she has to say about it, because logically, if what she says is true, I should still be seriously ill. I am also due to see my GI next Thursday (who is considered the top celiac disease specialist in Vancouver) and I will ask her if she has seen any new research that states what your doctor is proclaiming.

Before I asked her the specific question about soy, my understanding was that it was only the specific GENE of celiac that she and I have (she cannot have soy either). Perhaps she misunderstood my question somehow, and that original thought was correct. I am emailing her now.

[Rusla]

Much better tasting than soy milk is almond mild. In my opinion anyway. Then I am not a milk fan never was, just on my cereal and even then I had to make sure I could not taste it. As a kid milk made me choke and sick and I was forced to drink the vulgar stuff.

Now looking back my younger sister had the same problem and none of my family can have milk.

[srokie]

Angie:

This is a Celiac. com message board. You need to chill on your personal issues and your political stance. We are here to help people, not join people on a personal band wagon.

Alot of people depend on our recommendations and we need to be 100% in that. If you cannnot claime that, you have no need to post here. Recommendation are very serious. "I think" carried no weight here. We deal in facts.

Lisa

Was that really necessary? She clearly said she was doing some internet research on her own... and if people didn't express their opinions on this site, we wouldn't be able to help each other. If she thinks soy is hurting her, and another person thinks it is helping him/her, that is an important contrast to consider, don't you think?

[srokie]

Much better tasting than soy milk is almond mild. In my opinion anyway.

Thanks for the recommendation!

[srokie]

I've now officially seen her do this, so I can second this one.

What I'm still wondering is:

1) Does the reaction to prolamines as well as gluten have something to do with similar molecular structures -- i.e. -- is one's body mistaking one for the other because they're shaped like the same lego even if they have different colors?

2) Is this just a similar reaction and not an autoimmune response, or is there an actual autoimmune response happening?

3) Why does this affect some of us and not others -- does it have something to do with genetics, or does it have to do with the kind of damage already done to one's body or something else?

I am also forwarding these on to Dr. Saviano. The last time I asked her questions it took a good month for a response, just to give you a head's up.

[Carriefaith]

I would be interested in seing research done on the effects of soy on people with celiac disease. You should ask your doctor if any studies have been done where the small intestine has been biopsed in individuals following a strick gluten-free diet while eating soy. Studies like this have been done with pure uncontaminated oats and some people have damage and others don't.

About the casein/butter topic... Butter made from cow's milk usually contains whey which is not pure concentrated casein. However, I've read that whey can contain small amounts of the milk protein casein. People with allergies to milk, especially an anaphylactic allergy, cannot have any dairy including butter or parmesan cheese.

[Fiddle-Faddle]

Angie:

This is a Celiac. com message board. You need to chill on your personal issues and your political stance. We are here to help people, not join people on a personal band wagon.

Alot of people depend on our recommendations and we need to be 100% in that. If you cannnot claime that, you have no need to post here. Recommendation are very serious. "I think" carried no weight here. We deal in facts.

Lisa

This is also a place where we can think out loud and share what info might find about issues that affect many of us. Most of us here are not seeking Nobel prizes for our research; we are seeking answers to our health issues, which for many here, seem to grow more complicated by the day.

I saw no evidence that Angie HAD a personal band wagon, nor that she was discussing political stances. Many people have posted about soy issues before on this board. As for discussing personal issues, if you ask everyone to chill on their personal issues and just deal in facts, most of this board would be wiped out!

Personally, I'm not sure what to think about soy, so I am grateful when someone brings it up, as I have found conflicting info about it.

Lisa, I apologize if I am misunderstanding you, but it seems like you were telling Angie (nicely) to shut up. I don't want her to shut up; I'd like to hear what she has to say. I might agree with it; I might not. I suspect I'll remain confused.

[srokie]

I would be interested in seing research done on the effects of soy on people with celiac disease. You should ask your doctor if any studies have been done where the small intestine has been biopsed in individuals following a strick gluten-free diet while eating soy. Studies like this have been done with pure uncontaminated oats and some people have damage and others don't.

About the casein/butter topic... dairy butter usually contains whey which is not pure concentrated casein. However, I've read that whey can contain small amounts of the milk protein casein. People with allergies to milk, especially anaphylactic allergies, cannot have any dairy including butter or parmesan cheese.

Yeah, I'm sorry I made that so unclear. I didn't mean to convey the message that all celiacs can have butter... I just meant that soy and casein both have prolamines I know a celiac who can't have casein or whey, so she's out of options as far as dairy.

[lovegrov]

In the Atlanta area, Dr. Cynthia Rudert is considered one of the top celiac doctors in the U.S.

richard

[Carriefaith]

Yeah, I'm sorry I made that so unclear. I didn't mean to convey the message that all celiacs can have butter... I just meant that soy and casein both have prolamines I know a celiac who can't have casein or whey, so she's out of options as far as dairy.

Thanks, I understand now what you meant.

[srokie]

In the Atlanta area, Dr. Cynthia Rudert is considered one of the top celiac doctors in the U.S.

richard

There's a girl at my college with celiac... and I'm almost positive she sees Dr. Rudert because the name sounds extremely familiar. And this girl has never talked about soy being a problem. Soo basically we're down to 3 options:

1) my doctor misunderstood my question and the soy thing only applies to a specific gene of celiac (i think mine is 0305)

2) she's completely wrong

or

3) Other reputable doctors just don't know about this because it's too new and/or unaccepted and/or doesn't have enough sources?

[Fiddle-Faddle]

I think it's too early to tell if she is right or wrong (assuming she didn't misunderstand you). We can speculate all we want based on the knowledge that is already "out there," but since that knowledge is far from complete, we just have to wait and see!

In the meantime, this is a very interesting discussion.

[ENF]

To eliminate guesswork, and put the question of soy and casein to rest, we both had the soy and dairy tests done by Enterolab, and the results showed above-normal Fecal Anti-Soy and Anti-Casein IgA Units - which closed the book for us. We are now Gluten, Soy and Dairy free.

Maybe they'll come out with some research and statistics as to the prevalence of soy, and dairy, problems in people with Celiac.

[darlindeb25]

Dr. Peter Green is probably the most well known celiac doctor in the United States and he is here in NYC at Columbia University. I have attended one of his talks and I have also talked personally, more than once, with his top dietician, Anne Lee. Dr. Green does say that a very high percentage of celiacs cannot tolerate soy. I know it's true, I know several celiacs who do not tolerate soy, even in my own support group. Soy was the first intolerance I had after going gluten free. I do believe this doctor has very valid thoughts about soy, true, not all celiacs have a problem with it, yet there are many, many of us who do.

All thoughts should be welcome here, not just the ones that are popular, not just "know-it-all" opinions. I have learned nearly everything I know from other celiacs, not from doctors, or dieticians (well, except for two dieticians, one I know and love who does know more about celiacs that many people I know, my sister and Anne Lee). I know it's pretty much trial and error for any of us. No 2 are identical and no one's thoughts are less valuable than anyone elses.

Work together group, not against.

[Electra]

Angie:

This is a Celiac. com message board. You need to chill on your personal issues and your political stance. We are here to help people, not join people on a personal band wagon.

Alot of people depend on our recommendations and we need to be 100% in that. If you cannnot claime that, you have no need to post here. Recommendation are very serious. "I think" carried no weight here. We deal in facts.

Lisa

I never stated any political issues at all, and this board is specifically formed so we can express our personal issues. That's what support boards are for!!

In my post, I clearly stated that there was documentation to support both sides of the spectrum, so I was in no way tying to give false information. I think I was very objective and open minded about the information I had found, but never stated that I knew it to be "PROVEN"!!

If "I think" carries no weight here then most of us should not be here!! Even if I chose to believe "PROVEN" research that I have read that does not mean I would "critisize" you just because you don't, that's just wrong and uncalled for in my opinion. I'm glad it's a free country and I'm entitled to that opinion.

I apologize if my post offended you, that was never my intent.

[darlindeb25]

Here are 2 very good sites about soy. Dr. Mercola is very well known for his research. See if this helps you form an opinion. I am copying and pasting Dr. Mercola's info along with the site.

Open Original Shared Link

Soy Bad, Soy Good: The Pluses of Fermented Soy

Soy is a hotly debated product among those who promote and sell its nutritional value as well as consumers who eat it. The debate stems largely from the health value of nonfermented soy found in a great many processed foods in relation to those that use the much healthier alternative fermented soy.

Why? Nonfermented soy products contain phytic acid, which contains anti-nutritive properties. Phytic acid binds with certain nutrients, including iron, to inhibit their absorption. This is a direct, physical effect that takes place in the digestive system. Their ability to bind is limited by the milligrams of phytic acid present.

Products using nonfermented soy include:

Fresh green soybeans

Whole dry soybeans

Nuts

Sprouts

Flour

Soy milk

Tofu

What makes unfermented soy particularly unsafe: It's hard to avoid soy in processed foods such as baby formula, meat substitutes, drinks and snacks. One can find it in a great many domestically-produced food products at the grocery store. Additionally, soy is sanctioned by groups like the Soy Protein Council and USDA that cite the presence of isoflavones scientists say reduces one's risk of cancer.

On the other hand, fermented soy stops the effect of phytic acid and increases the availability of isoflavones. The fermentation also creates the probiotics--the "good" bacteria the body is absolutely dependent on, such as lactobacilli--that increase the quantity, availability, digestibility and assimilation of nutrients in the body.

Products using fermented soy include:

Natto

Miso

Tempeh

Soy sauces

Fermented tofu and soymilk

Many studies have shown traditionally fermented soy--which is the form that is very popular in many Asian cultures--aids in preventing and reducing a variety of diseases including certain forms of heart disease and cancers.

Good Foods

One such study of the culturing method involved in the production of the Japanese traditional food miso concluded the culturing process itself led to a lower number and growth rate of cancers. Researchers also found it was not the presence of any specific nutrient that was cultured along with the soyabean paste but the cultured soy medium itself that was responsible for the health benefits associated with eating miso.

Miso, a fermented or probiotic form of soyabean, is particularly rich in the isoflavone aglycones, genistein and daidzein, which are believed to be cancer chemopreventatives.

The health benefits are found to be as good with natto, according to research conducted by a Japanese scientist who found natto had the highest fibrinolytic activity among 200 foods produced worldwide. About 15 years ago, that same scientist discovered an enzyme produced in the fermentation process, nattokinase, a powerful agent contained in the sticky part of natto that dissolves blood clots that lead to heart attacks, strokes and senility.

Natto also contains vitamin K2 and isophrabon, which help to prevent diseases such as osteoporosis and breast cancer and slow down the aging process.

How Do Fermented Foods Work?

Scientists have considered three different theories:

Primary active ingredients in complex fermented soy "foods" act synergistically with secondary compounds

Secondary compounds mitigate the undesirable side effects caused by the predominant active ingredients

Multiple ingredients act through multiple discrete pathways to therapeutically affect the host. That allows lower concentrations of each of the botanicals or soy phytochemicals to be more efficacious when used together than when used individually

Four years ago, the World Health Organization reported the Japanese, who consume large amounts of fermented soy foods like natto and miso along with green tea, ginger and ocean herbs, have the longest lifespan of any people in the world.

Unfortunately, Americans didn't make the top 20 for lengthy lifespans, which has much to do with a Western diet that emphasizes foods that are processed and genetically altered. That could have a domino effect worldwide on the health of other cultures. Experts fear consumers in other cultures may abandon their traditional fermented foods for a more Western diet, losing healthy sources of probiotic whole food nutrition.

This is also a good site: Open Original Shared Link

I choose to believe what I choose to believe, just as we all should. If you feel soy is safe for you, then by all means, enjoy. I have never thought it is good for us and I am seeing too much proof to feel comfortable in telling anyone that soy is safe.

[srokie]

Thank you Deb - can't wait to read these when I'm off work!

[emcmaster]

I'm glad to see that people like srokie are posting things they think might be helpful to the rest of us. We would miss out on so much if no one bothered to do that.

I do, however, want to point out that I think we should take almost everything any doctor tells us with 'a grain of salt.' While this doctor sounds reputable, we all have had doctors tell us things that we know or later find out aren't true.

I am soy-light and try to avoid it completely because it messes with my thyroid medicine. I have also seen many reports that say soy is very bad for almost everyone. And yet many Asian cultures eat a lot of soy and live longer than we do (other factors contribute to this, of course).

Thanks, srokie for posting this info. I also would recommend almond milk. You can make your own very easily and with other nuts. For info on how to do it, PM me.

[Nancym]

And yet many Asian cultures eat a lot of soy and live longer than we do (other factors contribute to this, of course).

They don't eat as much soy as we do! They eat small amounts of tofu but most of their soy they eat is fermented, and it sure isn't in everything like it is here: lecthicin, oil, soy protein, soy flour, and on and on. We even feed our meat animals lots of soy!

[emcmaster]

They don't eat as much soy as we do! They eat small amounts of tofu but most of their soy they eat is fermented, and it sure isn't in everything like it is here: lecthicin, oil, soy protein, soy flour, and on and on. We even feed our meat animals lots of soy!

I'm sorry, I didn't mean to imply that they ate more than we do, just that they definitely eat it. But you're right - soy is in everything here in America unless you cook from scratch.

[Michi8]

I am also forwarding these on to Dr. Saviano. The last time I asked her questions it took a good month for a response, just to give you a head's up.

srokie, please do ensure you get permission from the original author before forwarding/reposting any messages to another person/forum. To do so without permission could be considered a violation of copyright and privacy.

Michelle

[bluejeangirl]

Here are 2 very good sites about soy. Dr. Mercola is very well known for his research. See if this helps you form an opinion. I am copying and pasting Dr. Mercola's info along with the site.

Open Original Shared Link

Soy Bad, Soy Good: The Pluses of Fermented Soy

Why? Nonfermented soy products contain phytic acid, which contains anti-nutritive properties. Phytic acid binds with certain nutrients, including iron, to inhibit their absorption. This is a direct, physical effect that takes place in the digestive system. Their ability to bind is limited by the milligrams of phytic acid present.

Products using nonfermented soy include:

Fresh green soybeans

Whole dry soybeans

Nuts

Sprouts

Flour

Soy milk

Tofu

What makes unfermented soy particularly unsafe: It's hard to avoid soy in processed foods such as baby formula, meat substitutes, drinks and snacks. One can find it in a great many domestically-produced food products at the grocery store. Additionally, soy is sanctioned by groups like the Soy Protein Council and USDA that cite the presence of isoflavones scientists say reduces one's risk of cancer.

On the other hand, fermented soy stops the effect of phytic acid and increases the availability of isoflavones. The fermentation also creates the probiotics--the "good" bacteria the body is absolutely dependent on, such as lactobacilli--that increase the quantity, availability, digestibility and assimilation of nutrients in the body.

Products using fermented soy include:

Natto

Miso

Tempeh

Soy sauces

Fermented tofu and soymilk

Many studies have shown traditionally fermented soy--which is the form that is very popular in many Asian cultures--aids in preventing and reducing a variety of diseases including certain forms of heart disease and cancers.

Good Foods

One such study of the culturing method involved in the production of the Japanese traditional food miso concluded the culturing process itself led to a lower number and growth rate of cancers. Researchers also found it was not the presence of any specific nutrient that was cultured along with the soyabean paste but the cultured soy medium itself that was responsible for the health benefits associated with eating miso.""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""

end of quote

Phytic acid can be found in most grains, seeds and beans. Rich sources of phytic acid are wheat bran and flaxseed (3 % phytic acid).

Action of Phytic acid: Phytic acid has been considered as an anti-nutritional component in cereals, seeds and beans. Research has traditionally focused on its structure that gives it the ability to bind minerals, proteins and starch, and the resulting lower absorption of these elements. However, resent research have shown that phytic acid has many health promoting effects. Phytic acid has antioxidant, anticarcinogenic, hypocholesterolemic and hypolipidemic effects.

In animal studies phytic acid showed a protective action in carcinogenesis. This action could be explained by its mineral chelating potential.

Phytic acid lowers blood glucose response by reducing the rate of starch digestion and slowing the gastric emptying.

Phytic acid releases inositol that during digestion. Although inositol is not an essential nutrient it might reduce depressions.

So I really don't believe fermented soy is good and unfermented bad. If you are sensitive to MSG or have problems with candida yeast overgrowth fermented foods along with aged foods or anything with molds or yeast in it is NOT good for you and I know there is alot of people who have that problem.

I have decided this year to give up red meats and I've decided to include soy to see how I feel. It is after all a good protein low in fat and a great alternative to milk. So far I haven't noticed a reaction to eating it. Well see how I do down the road.

I don't think it's a good thing to give baby boys as a formula. That would be my only concern, but it does offer protection with girls to prevent breast cancer. If you have thyroid problems don't eat soy. Otherwise I think the split in opinions are the ones that don't tolerate it anyway over the ones that do o.k. with it.

You'll have to post the reason its bad for celiac's because it contains gluten like reactions or whatever you're saying before I can exclude this from my diet. I take things like this seriously.

Gail (Just another opinion to consider.)

[sspitzer5]

On the thyroid boards, soy has been discussed frequently and the research seems to suggest that if you have a thyroid issue, soy should be avoided. It seems to be implicated in cases of autoimmune thyroid problems, which I have. So, personally, I try to avoid it.

Here's an interesting article that discusses some of the research on soy.

Open Original Shared Link

S

[srokie]

Just an update -

My mom has a roommate who is a doctor, and he demanded answers about this soy issue. Dr. Saviano gave me info to give to him, and after asking him where it is in his room and ransacking it, I can't find it. He gets back from his winter break on the 20th... I will share the info when I get my hands on it.