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srokie

Please Read - No Celiacs Can Have Soy!

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I specifically asked her on January 2nd if that information applied to all celiacs and she said yes.

Because, as she said, they are "mostly fat." The more I eat the more my stomach rejects it, but if I do what she says and keep it to a minimum, I'm fine...

She said the casein thing isn't necessarily applicable to all celiacs, and said she suspects my casein intolerance is only temporary.

Are you sure she is talking about casein tolerance, and not lactose intolerance? The lactose levels in various dairy products can vary significantly and will definitely make a difference in how a lactose intolerant person reacts. Lactose levels are lower in higher fat milks, so cream should be better tolerated than skim milk. Lactose levels in butter are very low too. Finally, Lactose intolerance may cease once a celiac's gut heals.

I'm not so sure that there's much difference in the amount of casein though...a casein allergy or intolerance is another thing altogether.

Michelle

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Are you sure she is talking about casein tolerance, and not lactose intolerance? The lactose levels in various dairy products can vary significantly and will definitely make a difference in how a lactose intolerant person reacts. Lactose levels are lower in higher fat milks, so cream should be better tolerated than skim milk. Lactose levels in butter are very low too. Finally, Lactose intolerance may cease once a celiac's gut heals.

I'm not so sure that there's much difference in the amount of casein though...a casein allergy or intolerance is another thing altogether.

Michelle

You're right, but I am sure she was talking about casein. Thanks though :)


Will no longer be posting or reading replies. Bye.

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Was asking about the casein because I throw up when I eat butter. I throw up with milk too, but more often with butter (i.e. when eating buttered popcorn).


Diagnosed by my doctor on the basis of symptoms only (May 2005). My symptoms include:

-amenorhea (all my life)

-high prolactin levels

-major bloating ("Are you pregnant?")

-swollen ankles

-possible DH: had the rash on my elbows and scalp (gone now)

-joint pain

-childhood arthritis

-all dairy allergy

-dry skin

-fat in stool sample (no connection was made at the time...I was being tested for something else...When the doctor told me of the fat I replied by saying: "I eat alot of olive oil". DUH!!!!)

-mother is allergic to wheat

-ravenous appetite: I eat for 5 people

-light coloured stool

-pass stool 7 times a day sometimes

-hemorrhoids

-get the hiccups alot (not sure if this is related)

-some reflux

I'm sure there are more that I don't recall at the moment. SIGH.

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Come on, try to be nice. I am a celiac and I know that having a crumb is not ok. There are several components to milk - lactose, whey, casein, FAT, etc, - and when you have butter which is mostly fat, you eliminate the casein. This is why skim milk has concentrated casein - they have removed the fat component. Here are my Enterolab Results:

Fecal Antigliadin IgA 124 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 51 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 95 Units (Normal Range <300 Units)

Fecal anti-casein (cow


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I hope I was a bit clearer... I'm used to being able to wave my hands and wildly gesture as I talk, and I sure want to do that for this one. ;)

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?


Erica

Inconclusive blood test results

Positive Enterolab results

Positive dietary results

gluten-free since 2/10/06

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the statement that NO celiacs can have soy is just plain wrong. my girls have soy and milk and we have had their Ttg levels tested---more than once----and their levels, which indicate an autoimmune response, have dropped. if what that doc said was true, my girls levels would not have dropped.

i'm guessing maybe she is up-to-date on some celiac info----but not ALL celiac info.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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She said the casein thing isn't necessarily applicable to all celiacs, and said she suspects my casein intolerance is only temporary.

I laboratory tested as having a casein intolerance and was told it was genetic and permanent just like gluten. The same with eggs. They are all 3 inherited, genetic protein allergies. Can these kinds of casein allergies and egg allergies be temporary? I was told not.

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Saying all Celiacs can't have soy is like saying all Celiacs can't have dairy, or all Celiacs have the same symptoms. Which we know these statements would be untrue.

In my family so far I am the only positive tester for Celiac but the whole family can not have dairy and we can not have Casein. Not all Celiacs have the same symptoms exactly as any other one.

Let us all remember some doctors have no clue really and their information they get on various things changes also. Today she may get something that says that or she interprets as it saying all Celiacs can't have soy. In three months from now she may get something that says all Celiacs can have soy but not corn gluten. The whole medical profession, medications and treatments is one snafu after another.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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I went dairy free just after I went gluten-free almost 2 years ago, however I never cut out soy. I have had multiple blood tests and most recently (October) I had another gastroscopy to make sure that I was confirmed gluten-free. My biopsies came back and my GI said that they looked "better than normal". If what this doctor says is true, that soy triggers a celiac reaction, then my biopsies should have come back a mess due to all the soy I've eaten in the past 2 years. In addition, I would still be experiencing my gluten reaction symptoms if this was the case (I am ULTRA sensitive) and I haven't had any in forever. I would definitely have to DISAGREE with that statement! The only think I can think of is that perhaps Chrissy in some way misunderstood what the doctor was actually saying?? Or perhaps the doctor herself misconstued or misinterpreted some new research or info she had just gotten?


Lauralee

Diagnosed Celiac's March/05

Diagnosed Lyme Disease March/07

2 out of 4 children gluten intolerant

husband not tested

whole family gluten free

If it's not made in a dedicated gluten free environment, it's NOT gluten free...it's "gluten not intentionally added!!!"

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:P Tiffany, I often tell my sweetheart that if his hands were tied down, he would not beable to talk!!! :lol::lol: Sometimes I actually worry that I may be standing too close in some of his stories!!! :lol:

We are all correct. Doctors do not like being told they do not know it all. Most doctors anyways!!! We must educate them. I am sure that Srokie's doctor thinks she is correct and what she is saying is true of many of us. I am an example of what she says. The doctor I go to wants me to bring him any info I feel would be beneficial for him. He never questions my celiacs and does what he can to help me figure things out. So far, he is the best doc I have found.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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While I obviously can't speak for anyone else, I eat both soy and millet, and feel better than without them. No two people will be identical in every way, and this includes Celiacs. Others can eat things I can't, just as I can eat things others cannot.


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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I never said she was "wrong", I said I was skeptical.

Of course, I am skeptical anytime someone makes an all-encompassing generalization about ALL Celiacs.

I have often said that I believe there is a great number of Celiacs who have other intolerances, but to make such a sweeping statement without provuiding research, studies or similar studies by other people is dangerous and ill-advised.

In any event, the theory is essentially destroyed by some of the posters on here who have stated that they have consumed SOy and there have been no symptoms of an auto-immune reaction or "blips" in the blood tests. If it did not bother them, then it doesn't affect ALL Celiacs, right?

JMHO

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I never said she was "wrong", I said I was skeptical.

Of course, I am skeptical anytime someone makes an all-encompassing generalization about ALL Celiacs.

I have often said that I believe there is a great number of Celiacs who have other intolerances, but to make such a sweeping statement without provuiding research, studies or similar studies by other people is dangerous and ill-advised.

In any event, the theory is essentially destroyed by some of the posters on here who have stated that they have consumed SOy and there have been no symptoms of an auto-immune reaction or "blips" in the blood tests. If it did not bother them, then it doesn't affect ALL Celiacs, right?

JMHO

All of you make very valid points and I obviously look like the stupid one since I don't have the documentation, but like I said, on January 2nd I specifically asked her if what she said about soy applied to ALL celiacs and she said yes, this is new research that most people don't know. Also, like I said, the second her incompetent receptionist replies to me about the sources, I will be sure to post it.

As for the casein, I said she suspected mine is temporary. I know I made it sound like the same problem, but it's not. I just made a stupid comparison, because again, I'm not the doctor. I know nothing about medicine (obviously) and haven't had science or math since high school. I am a French and music major, and I'm sorry my brain doesn't think that way! So what I say probably won't make any sense but I'm trying my best to convey new, but very concrete, research - and when I get the sources I will show you guys.


Will no longer be posting or reading replies. Bye.

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:P Tiffany, I often tell my sweetheart that if his hands were tied down, he would not beable to talk!!! :lol::lol: Sometimes I actually worry that I may be standing too close in some of his stories!!! :lol:

We are all correct. Doctors do not like being told they do not know it all. Most doctors anyways!!! We must educate them. I am sure that Srokie's doctor thinks she is correct and what she is saying is true of many of us. I am an example of what she says. The doctor I go to wants me to bring him any info I feel would be beneficial for him. He never questions my celiacs and does what he can to help me figure things out. So far, he is the best doc I have found.

Yes, and by no means am I saying that my doctor is the all-knowing being who could never be wrong.

But don't you guys think that - in the event she is right - I would be quite negligent as a fellow celiac not to share information that could make you all feel better?


Will no longer be posting or reading replies. Bye.

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I went dairy free just after I went gluten-free almost 2 years ago, however I never cut out soy. I have had multiple blood tests and most recently (October) I had another gastroscopy to make sure that I was confirmed gluten-free. My biopsies came back and my GI said that they looked "better than normal". If what this doctor says is true, that soy triggers a celiac reaction, then my biopsies should have come back a mess due to all the soy I've eaten in the past 2 years. In addition, I would still be experiencing my gluten reaction symptoms if this was the case (I am ULTRA sensitive) and I haven't had any in forever. I would definitely have to DISAGREE with that statement! The only think I can think of is that perhaps Chrissy in some way misunderstood what the doctor was actually saying?? Or perhaps the doctor herself misconstued or misinterpreted some new research or info she had just gotten?

I appreciate your comment and will forward it to Dr. Saviano. As you can imagine, she's really sick of being questioned, but I'd like to see what she says to this. And were you referring to me? My name is Ashley :)


Will no longer be posting or reading replies. Bye.

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pubmed has no listing of any recent articles stating that Celiacs cannot have soy. There are articles that deal with overall food intolerances (i.e., multiple food issues) that include Celiac, but none that say that soy causes a Celiac reaction.

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wow I have been looking up the dangers and benefits of soy for the last couple of hours and I'm shocked. I genuninely thought soy was very healthy, but it seems as though there is a lot of evidence to the contrary. It seems as though soy can cause all kinds of autoimmune problems and although it may give you a lower chance of some cancers it gives you a higher chance of autoimmune type cancers (like stomach and intestinal cancers)!!

I'm glad I'm not fond of soy, but I'm sure there is a ton more evidence out there that supports both sides of the spectrum.

It sucks to live in a nation that allows marketing and profits to overwhelm us with the positives without giving us the negatives in the same clear fashion.

Hopefully none of the negative things I've read about soy are true!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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I hate to say this but I am sure if we all live long enough we will all die of some sort of cancer or auto accident. So far everything we eat, breath, touch or slather on our bodies seems to cause cancer. The doctors give an FDA approved drug out and a year later you grow horns, cloven hoofs, impregnated by consuming watermelons and licking light bulbs with give warts along with cancer.

What is safe? Nothing is really safe because even staying in your house the furnace can go screwy and posion you. So, maybe Soy causes cancer and maybe it doesn't, they still can't make up their minds on wine and eggs.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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But don't you guys think that - in the event she is right - I would be quite negligent as a fellow celiac not to share information that could make you all feel better?

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") I don't think soy is always the problem for all celiacs...it might be a preservative or casein or legumes or another condition all together...and for some, gluten-free is enough...Anyway...I guess I'm just kind of rambling here...so hopefully we'll get more information on this soon.


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

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I hate to say this but I am sure if we all live long enough we will all die of some sort of cancer or auto accident. So far everything we eat, breath, touch or slather on our bodies seems to cause cancer. The doctors give an FDA approved drug out and a year later you grow horns, cloven hoofs, impregnated by consuming watermelons and licking light bulbs with give warts along with cancer.

What is safe? Nothing is really safe because even staying in your house the furnace can go screwy and posion you. So, maybe Soy causes cancer and maybe it doesn't, they still can't make up their minds on wine and eggs.

I agree whole-heartedly. My dad never smoked in his life and died at 59 of a lung disease. My grandfather (other side) drank alcohol and smoked heavily from his teens on, and died at 88. And I've heard of alcoholics having perfectly clean livers. So who the heck knows....


Will no longer be posting or reading replies. Bye.

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I hate to say this but I am sure if we all live long enough we will all die of some sort of cancer or auto accident. So far everything we eat, breath, touch or slather on our bodies seems to cause cancer. The doctors give an FDA approved drug out and a year later you grow horns, cloven hoofs, impregnated by consuming watermelons and licking light bulbs with give warts along with cancer.

What is safe? Nothing is really safe because even staying in your house the furnace can go screwy and posion you. So, maybe Soy causes cancer and maybe it doesn't, they still can't make up their minds on wine and eggs.

LOL I kind of agree, but now that I have Celiac and my chances of getting intestinal and stomach cancers are almost doubled then I really don't want to take any chances. I'm sure If I liked soy I would feel differently but I've yet to find a soy product that I found remotely tasteful YUK ;-)!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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Hopefully none of the negative things I've read about soy are true!!

I hope so too. I was really looking forward to soymilk because even if it's gross, it's still milk... I tried rice milk (can't steam that to make lattes) and almond milk (really watery).

Unfortunately I think it is true. Once again I will post info the second I get it.


Will no longer be posting or reading replies. Bye.

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I appreciate your comment and will forward it to Dr. Saviano. As you can imagine, she's really sick of being questioned, but I'd like to see what she says to this. And were you referring to me? My name is Ashley :)

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.


Lauralee

Diagnosed Celiac's March/05

Diagnosed Lyme Disease March/07

2 out of 4 children gluten intolerant

husband not tested

whole family gluten free

If it's not made in a dedicated gluten free environment, it's NOT gluten free...it's "gluten not intentionally added!!!"

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wow I have been looking up the dangers and benefits of soy for the last couple of hours and I'm shocked. I genuninely thought soy was very healthy, but it seems as though there is a lot of evidence to the contrary. It seems as though soy can cause all kinds of autoimmune problems and although it may give you a lower chance of some cancers it gives you a higher chance of autoimmune type cancers (like stomach and intestinal cancers)!!

I'm glad I'm not fond of soy, but I'm sure there is a ton more evidence out there that supports both sides of the spectrum.

It sucks to live in a nation that allows marketing and profits to overwhelm us with the positives without giving us the negatives in the same clear fashion.

Hopefully none of the negative things I've read about soy are true!!

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


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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