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Please Read - No Celiacs Can Have Soy!


srokie

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Aizlynn Rookie

Cow products versus sheep and goat. for an Italian to give up pastas, bread, and cheese has been extremely difficult. I find anything I eat from cow just sucks for my body, not matter what form. However, I find when I really need to have that cheese on my gluten-free pasta dishes, I seem to do fine with a cheese made from sheeps or goats milk. especially pecorno romano, sheep/goat feta cheese, and chevre. Have any other dairy free people "tested" this method? thanks

One thing to keep in mind, no two bodies react the same, what works for one does not work for another, so don't take this as all inclusive :) thanks


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  • Replies 103
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tarnalberry Community Regular

The caseins in different animals milk are often different. Cow milk is primarily made up of one subtype of casein, which is found at much lower levels in sheep and goat (and buffalo) milk, so for those who are sensitive to only one type of casein, and have at least a small tolerance, moderate levels of milk from other animals may be just fine for them. (That would *not* be true for anaphylactic allergies, where *any* quantity would cause a serious reaction.)

lonewolf Collaborator
  Aizlynn said:
Have any other dairy free people "tested" this method? thanks

I avoid anything that comes from a cow - I don't even do well eating beef. (I have even given up my beloved butter - better change my signature.) I have used Sheep milk Pecorino Romano and goat milk cheeses very occasionally with no noticeable problems.

Rusla Enthusiast

Beef causes me deathly problems so I never eat and haven't for years except I did have some chili which had it in it...Yuck. I make my chili vegetarian or with chicken. I also eat no cows milk I use goats cheese and no problems with it .

Fiddle-Faddle Community Regular

Liz, does ghee cause you problems, too?

And Rusla, did you ever try Kosher beef or organic (no hormones, no pesticides in the feed, no antibiotics, etc) beef? I'm not trying to sell it to you or anything, I'm just curious if it gave you the same bad reactions as regular ol' beef.

  • 3 weeks later...
srokie Newbie

Ok here's the info Dr. Saviano gave me about soy in September of 2006. I told you I would tell you the SECOND I got my hands on it and I kept my word.

Open Original Shared Link

Here are some notes I wrote the day she talked to me about soy:

Soy = 06 gene

Liver takes gliadin and treats it like wheat. T-cells drop like a rock.

Prolamine with a fraction of gliadin.

Soy lecithin is ok to eat.

To respond to several posts about how you feel fine when you've eaten soy for years and why it hasn't shown up on your GI tests, she said the following:

"No. These are in the immune system not in the liver and not visible with the scope. Soy damages the immune system

num1habsfan Rising Star

I think it depends on each persons own reactions to things. I'm a super, super sensative Celiac, but something like soy or corn has no effect on me. I'm not disagreeing OR agreeing with you. I'm just repeating what others said on this topic: everyone is different

~ lisa ~


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Fiddle-Faddle Community Regular
  num1habsfan said:
I think it depends on each persons own reactions to things. I'm a super, super sensative Celiac, but something like soy or corn has no effect on me. I'm not disagreeing OR agreeing with you. I'm just repeating what others said on this topic: everyone is different

~ lisa ~

I think Srokie addressed that in #3: "Why does this affect some of us and not others? It depends on gene codes."

Jestgar Rising Star

Neither the site she gave, nor the site it cited offer ANY information on where they got those statements.

hathor Contributor

  Jestgar said:
Neither the site she gave, nor the site it cited offer ANY information on where they got those statements.

The Weston A. Price Foundation is hardly uncontroversial. I was just researching them the other day. (They are the ones who think saturated fat is good for you. Some have stated that they are funded primarily by meat and dairy farmers, something I've been unable to confirm one way or the other. They do get mentioned in a number of farmer-support sites, though. If they were primarily funded this way, I doubt they would admit it.) For a different look at soy, critical of the position of the Weston Price Foundation's Fallon and Enig:

Open Original Shared Link

Open Original Shared Link

I know that it is difficult to debate this subject in this forum. Do we have access to all the studies and the expertise to understand them? Just realize that there is a controversy and read both sides to the extent you can before making up your mind.

Personally, I've come to the conclusion that natural soy products are fine as a small part of one's diet, but have removed isolated soy proteins, as a result of this footnoted article, which also addresses the studies on soy, pro and con: Open Original Shared Link

It seems best to stay away from the manufactured stuff, supplements, etc.

If you want to avoid isolated soy proteins, check labels. I've seen them added to some soy milks and are common in soy cheeses and "meats." But they get added into other products as well.

Jestgar Rising Star
  hathor said:
It seems best to stay away from the manufactured stuff, supplements, etc.

This seems like the best plan for all kinds of healthy eating.

Thanks for the sites. I'll check them out.

darlindeb25 Collaborator

Well, I agree with Srokie and her doctor. Soy is not good for any of us. I have seen many sites just like hers and they all say the same thing and I totally agree.

The other thing I want to state here is: we do not all think the same way, we do not all agree on everything. We need to respect each other's opinions, whether we agree or not. If there were 10 of us in a room and 7 said soy was safe and 3 said it isn't, I would still say it isn't. I have read too much to feel safe with it. I feel guilty for giving it to my kids as babies now, that's how strongly I feel about it---yet, I do not expect my opinion to change anyone elses.

I feel Srokie has every reason to feel insulted and it's sad that she has to feel this way.

Mango04 Enthusiast
  hathor said:
It seems best to stay away from the manufactured stuff, supplements, etc.

I definitely agree.

  Quote
The Weston A. Price Foundation is hardly uncontroversial. I was just researching them the other day. (They are the ones who think saturated fat is good for you. Some have stated that they are funded primarily by meat and dairy farmers, something I've been unable to confirm one way or the other. They do get mentioned in a number of farmer-support sites, though. If they were primarily funded this way, I doubt they would admit it.)

Weston A. Price does not support conventional farming or processed dairy, so I don't understand how that makes sense. Of course some vegans and vegetarians will go out of their way to disprove the Weston A. Price findings. That's hardly surprising. For the record, I eat vegan a large majority of the time, yet I still find some of the Price information valuable. I'm just saying it's possible to draw information from both sides of the argument while determining what's best for one's own body.

Sorry that had nothing to do with soy, but this is already the most random, bizzare thread anyway... :rolleyes:

Edit: I take it back. That had everything to do with this soy argument. Everyone needs to do the research for themself and determine what's best for their own body based on as much information as possible from both sides of the argument. (Okay I'm really done now LOL).

Felidae Enthusiast

Here are a few links for scientific abstracts on soy isoflavins for people that like to read those kind of articles.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

hathor Contributor
  Mango04 said:
Everyone needs to do the research for themself and determine what's best for their own body based on as much information as possible from both sides of the argument.

You won't get any argument from me on that.

blueeyedmanda Community Regular
  hathor said:
You won't get any argument from me on that.

me either!

Jestgar Rising Star
  darlindeb25 said:
The other thing I want to state here is: we do not all think the same way, we do not all agree on everything. We need to respect each other's opinions, whether we agree or not.

I think this is true, and, although sometimes it's easy to read something and feel insulted, try to look at it as if the person was just stating a different view.

If I totally don't respect someone's viewpoint, I don't respond. Which means that every argumentative post I've written was written with the intention of presenting a different viewpoint. I have no clue if they came across that way or came across as me being a B, but I've never intentionally said anything that was meant to be hurtful or disrespectful.

Cruiser Bob Newbie
  Aizlynn said:

Cow products versus sheep and goat. for an Italian to give up pastas, bread, and cheese has been extremely difficult. I find anything I eat from cow just sucks for my body, not matter what form. However, I find when I really need to have that cheese on my gluten-free pasta dishes, I seem to do fine with a cheese made from sheeps or goats milk. especially pecorno romano, sheep/goat feta cheese, and chevre. Have any other dairy free people "tested" this method? thanks

I've been playing around with dairy/sheep/goat for years now - - in my efforts to get cheese back in my diet. Short of my next food allergy test (2 weeks), I've narrowed my issues down (food diary, action/reaction, elimination) to my dairy issues being caisens not lactose. As part of this I had a long discussion with the cheese monger at the local market one day (2nd generation goat diary). Sheep/Goat caisens are smaller, thus easier to digest. After 6+ years now, I'm able to slip a little sheep/goat into my diet. The hard sheep cheeses are really nice, plus I've actually had fresh goat cheese that did not have that "goaty" aroma.

Bob

gluten-free-6+yrs

DF 5+ yrs

Nightshade/egg/chocolate free - more or less for 3 yrs.

kirbymom Newbie

Thanks so much to srokie for her initial posting in this thread. I have read most of the posts and they interest me very much.

We all seem to have a mistrust for doctors of any type. It is my experience that MDs and Ph.Ds both do not or cannot know everything about every condition. However, the training for MDs in North America is more of "let's treat the symptoms" while a lot of people with PhDs are looking for underlying causes as well. It is up to us to work with them and self educate as well. Personally, the most encouraging thing my family got from our doctor (an MD) was "Well if the diet makes you feel better, keep it up" (no tests or anything). The other encouraging thing was me telling him that our 2 yo dd was actually starting to grow and gain weight and had very few issues with her asthma- he said great and joked that I knew everything. From what I have been reading, I have a lot to learn.

From a researcher point of view (my Ph.D is in Biochemistry), antibodies are "raised" against areas of proteins called epitopes - people can have cross-reactivity issues to similar regions in other proteins including those from other organisms be it dairy animals, soy, or others. I am extremely interested in researching all of this as well as underlying causes (I think I have a decent hypothesis, but need to look up some more things). This is because of my own personal situation - hubby went gluten free November 05, dd6 January 06, dd 2 July 06 (cleared up asthma, problematic again when cow's milk introduced), me September 06 (after I had a lot of gluten in the hospital when dd was born and my nursing 2 year old reacted). I was gluten light at that point and figured I was just tired due to being pregnant (but could not gain weight - 16 lbs total pregnancy) - I have since challenged this accidentally and do not want to go back. All of us seem to have milk issues as well including hubby who never thought he did. My middle daughter seems to have a slight soy intolerance (less severe than dairy, but still present).

I think that Srokies doctor may have some knowledge of soy from her own or a colleague's research that may yet to be published although she may be overstating the "all celiacs should not eat soy". Sorry to have gone on about my own family, but I believe this whole issue affects many more people than the accepted norm and sharing information is needed.

  • 1 year later...
redbaronesse Newbie

getting back to the original statement in this post: soy is dangerous. Prolamines are not the only problem with soy. The whole plant as processed by modern manufacturers is dangerous and unhealthy. The soybean contains a long list of toxins that in their raw unprocessed form are dangerous to the human body, lectins, phytates, etc. Orientals knew this for centuries before they developed ways to ferment or process it that would destroy those toxins. Never eat raw soy!! Modern manufacturing processes totally bypass this ancient wisdom and use unhealthy chemicals such as aluminum to process the modern soybean into the various food stuffs we have available today. All you need to do is enter soy and thyroid into a search string and you will bring up thousands of web pages describing the dangers of eating soy. Soy is just as dangerous to your thyroid (the regulator of your metabolism) as wheat and gluten are to you your intestines. If you wish to read further the best website I have found on the subject that gathers much of the research into one site is Open Original Shared Link

There is a direct relationship between Celiac and autoimmune thyroid disease, so you all need to be aware and cautious of the dangers of soy. I personally was diagnosed with Hashimoto's hypothyroidism back in 1993 and didn't know about the Celiac connection until about 2 years ago. As a fitness trainer I was caught up in the whole "must eat healthy, must eat soy" bs that is out there until I started doing my own reading and research. I saw drastic improvement as soon as I took soy out of my diet. When I learned about Celiac while working on my medical degree, and removed gluten from my diet I improved even more.

Anyone with food issues pretty much needs to be a walking medical encyclopedia, let my small bit of knowledge be added to the knowledge you already have. Soy really IS dangerous.

  • 4 months later...
CarolS Newbie
  srokie said:
Please read carefully - I got this information from a doctor who is a celiac herself, and who is extremely up-to-date with information on celiac disease!!

NO CELIACS CAN HAVE SOY.

It contains prolamine which your liver will think is gluten because it's extremely similar. You may have heard you can't have CASEIN (a protein in cow's milk) and that is for the same reason - there is prolamine in it and that is probably because the cows are fed soy. Manufactuers will soon be required to remove "gluten free" from the label if the product contains soy! Please, please, from a celiac, take me seriously and remove soy from your diet. Soy LECITHIN is ok, that's just an emulsifier.

(By the way, butter is ok because it's mostly fat. Parmesan cheese is also ok, as well as milk chocolate because that's also mostly fat.)

ALSO: Most doctors AND THIS SITE think that amaranth and millet are ok. THEY ARE NOT!!!!! Do not eat millet or amaranth!!!!!!

Feel free to contact me for more info or for the name of my doctor. She does phone appointments!

I just found this website, but was dx'd w/celiac almost 2 years ago. In trying to be gluten-free, I have learned that "Curry" powder, as such, frequently contains Gluten. It is far safer to make your own 'curry' powder from the root ingredients - turmeric, cayenne, chili (these 2 in small quantities) cumin, coriander, fenugreek or asafoetida, salt, and pepper. But if you buy "Curry Powder" - it will give you symptoms, as will curry powder that lists "Curry" as an ingredient.

Potatoes, peppers (hot as well as sweet),paprika, eggplant, and tomatoes are commonly referred to as "Nightshades" and contain alkaloids that seem to disrupt some of the psychochemistry of the brain (neurotransmitters). My arthritis specialist cautioned me that they might exacerbate my symptoms.

I don't know if they contain prolamines besides/in addition to alkaloids; reference is made to the work of William G. Darcy, 1986 Solanacea, Columbia University Press. (I haven't checked, and not being a chemist or botanist, probably would not understand his work very well.

My doctor who treats me for Asperger's Syndrome (similar to Autism) wants me to additionally become casein-free (I have been gluten-free since October 2006, save for occasional 'accidents'. She is a D.O. specializing in psychiatry; she herself is gluten sensitive. My gastroenterologist is of the old school - since I didn't have blunted villii (as I always tried to stay away from wheat) I did NOT have Celiac disease! Another case of 'chronic duodonitis' and all the symptoms of gluten intolerance.

I personally have noticed I can tolerate Sheeps' milk cheese very well (Mantouri, Machiengo, etc.) and goat's milk products to a certain extent (Cheddar, feta).

I have been drinking soymilk, however, for more than 20 years, and have not noticed symptoms. My Asperger's doctor suggested soy or rice milk to avoid casein. I know of the dangers associated with Soy (especially that it is similar to estrogen in the system, and might increase the risk of breast cancer). Rice Milk makes my blood sugar go horrendously low, and I am allergic to tree nuts. What options are there?

I also would be interested in the science linking soy milk and gluten. I have not encountered it yet in my investigations.

DingoGirl Enthusiast

oh dear...........

is this thread still here? :unsure:

Didn't we all decide that it was bogus?

(sorry if I sound cheeky but - this thread created quite a skirmish!)

Some celiacs choose not to consume soy, but it has nothing to do wtih gluten.......

Lisa Mentor
  CarolS said:
I just found this website, but was dx'd w/celiac almost 2 years ago. In trying to be gluten-free, I have learned that "Curry" powder, as such, frequently contains Gluten. It is far safer to make your own 'curry' powder from the root ingredients - turmeric, cayenne, chili (these 2 in small quantities) cumin, coriander, fenugreek or asafoetida, salt, and pepper. But if you buy "Curry Powder" - it will give you symptoms, as will curry powder that lists "Curry" as an ingredient.

Potatoes, peppers (hot as well as sweet),paprika, eggplant, and tomatoes are commonly referred to as "Nightshades" and contain alkaloids that seem to disrupt some of the psychochemistry of the brain (neurotransmitters). My arthritis specialist cautioned me that they might exacerbate my symptoms.

I don't know if they contain prolamines besides/in addition to alkaloids; reference is made to the work of William G. Darcy, 1986 Solanacea, Columbia University Press. (I haven't checked, and not being a chemist or botanist, probably would not understand his work very well.

My doctor who treats me for Asperger's Syndrome (similar to Autism) wants me to additionally become casein-free (I have been gluten-free since October 2006, save for occasional 'accidents'. She is a D.O. specializing in psychiatry; she herself is gluten sensitive. My gastroenterologist is of the old school - since I didn't have blunted villii (as I always tried to stay away from wheat) I did NOT have Celiac disease! Another case of 'chronic duodonitis' and all the symptoms of gluten intolerance.

I personally have noticed I can tolerate Sheeps' milk cheese very well (Mantouri, Machiengo, etc.) and goat's milk products to a certain extent (Cheddar, feta).

I have been drinking soymilk, however, for more than 20 years, and have not noticed symptoms. My Asperger's doctor suggested soy or rice milk to avoid casein. I know of the dangers associated with Soy (especially that it is similar to estrogen in the system, and might increase the risk of breast cancer). Rice Milk makes my blood sugar go horrendously low, and I am allergic to tree nuts. What options are there?

I also would be interested in the science linking soy milk and gluten. I have not encountered it yet in my investigations.

Welcome to the Forum!

I was hoping that this thread would have been deleted a long time ago.

I would like to suggest that you start a new thread regarding the science linking soy milk to gluten. It might be more beneficial than reviving this way-too-long thread.

psawyer Proficient

I agree. A new thread without the baggage this one carries would be better.

  • 1 year later...
8Curvey8 Rookie

Hi There - just wondering who the doctor you see in Vancouver is? I am in desperate need to find one in the Vancouver area.

  On 1/12/2007 at 3:18 AM, LL04 said:

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.

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