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srokie

Please Read - No Celiacs Can Have Soy!

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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!


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My understanding is that some of us are sensitive to prolamines in that way and not others -- I don't test positive for casein intolerance, but I do have an autoimmune response to gluten. So I think your doctor's information might be too sweeping.

Does anyone know more of the hard science behind why of us seem to react to all prolamines and others don't?


Erica

Inconclusive blood test results

Positive Enterolab results

Positive dietary results

gluten-free since 2/10/06

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Approximately 30% of celiacs will respond to gluten-similar proteins in soy, corn, casein, millet, amaranth, teff, buckwheat, oats and other supposedly "safe" foods. This is, we think, because of variations in the genes that can combine to cause celiac disease.

This is why we do multiple test panels to diagnose celiac disease - you should have your initial biopsy and/or blood panel as a baseline for autoimmune response and then go conventionally gluten-free - wheat rye etc. Six months later, you should be re-biopsied or tested and if you have adhered to the diet and continue to have an autoimmune response, you should remove corn and soy from your diet before retesting in six months. Continue to eliminate possible problem proteins and retest (please don't ask your doc for more than three biopsies - diagnosis, 6 months and 1 year. . .after this you can blood test unless you are Ig inhibited) until your blood panels cease to show evidence of autoimmune response.

Personally, I react to all grains except rice (including alcohols and vinegars) but have absolutely no problems with dairy (thank god).

ps. your doc may be advocating a "better safe than sorry" diet, particularly if you are relatively asymptomatic

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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.

This seems very unlikely.

Although some research has shown that Celiacs have a higher likelihood of having soy and/or casein intolerances, it's probably because these are big ol' hurkin' proteins and difficult for your body to digest. Anyone who has any kind of leaky gut issues will be allowing some of these proteins will be escaping into the bloodstream where they are not supposed to be.

Other points:

Your liver doesn't really have anything to do with antibody production.

Casein and soy each have their own antibodies indicating that they are not seen as "gluten" by the body.

Celiacs that consume casein and/or soy don't have elevated "anti-Celiac" antibodies reinforcing point 2 above.

Although this info does suggest that maybe you should avoid these hard to digest proteins until your gut has a chance to heal.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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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!

Reference information for claims which vary so widely from currently available research would be very useful.

Prolamines (simple proteins with a high proportion of proline) do not make your liver think something is very similar to gluten. The autoimmune reaction does not even initiate in the liver; it initates in the intestinal tract. It is true that the 33-mer that catalyzes the immune reaction is rich in prolines, and in that is distinctive from many of the cereal proteins that do not trigger the same reaction, but it's the secondary and tertiary structures the proline cause (the twisting and folding of the protein) that are also important there. There is no evidence that any portion of soy proteins are significantly similar to the celiac-triggering 33-mer of wheat.

Casein does not contain proline because cows are fed soy; it containes proline because that is part of the amino acid sequence of casein. There is some evidence - though it is far from conclusive - that there are some similarities between portions of the bovine casein and the portion of gliadin. Whether it's relevant to the celiac reaction, however, is a whole different story.

Amaranth and millet, however, are significantly different in chemical composition and structure.

Finally, even drawing the conclusion that butter and cheese are ok because they are "mostly fat" while under the assumption that casein is similar enough to gliadin to cause the celiac reaction is an erroneous conclusion and tantamount to saying intentionally eating a few crumbs is ok.


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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Finally, even drawing the conclusion that butter and cheese are ok because they are "mostly fat" while under the assumption that casein is similar enough to gliadin to cause the celiac reaction is an erroneous conclusion and tantamount to saying intentionally eating a few crumbs is ok.

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


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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:

By my reckoning there's still plenty of casein in butter. If you make ghee from it it removes a lot of the casein. Butter is only something like 85% fat, so there's 15% of other stuff in there, including casein. Fat in milk only accounts for a small percentage of the total volume, so removing the fat only slightly increases the the casein. Case in point (so to speak) if there were no casein in whole milk you couldn't make cheese, since making cheese removes the whey (another protein) and what you're left with is concentrated casein, fat, and all the other proteins that make up milk.

Casein is incredibly sticky protein, just like gluten is. They use it in glues. I bought some pure casein once to make protein drinks, it was really nasty stuff and gummed up everything it came in contact with. I think this desire to bond with itself is what makes cheeses work, the caseins forms molecular bonds that make the cheese solid. Ok, just guessing about that but gluten does that in bread.

I just did a quick lookup of prolamines, it seems to be a class of proteins found in plants, of which gluten (gliadin) is one. But I don't really see anything that indicates that all prolamines are a problem, just a subset of them.

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your personal tests say that YOU are allergic to casein but not EVERYONE is it just depends on the person.

I am soy free but that is b/c i have an anaphalatic reaction to corn and soy but i know many celiacs who can do soy just fine.


Molly

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I understand what MY test results say.

I am trying to relay information from a very up-to-date doctor to help you guys. I only posted because I genuinely care, but I can't do anything if you resist what I say.

My doctor's name is Dr. Bernadette Saviano, and her number is 404-531-0900. Maybe you'll listen to her if you won't listen to me. Otherwise, sorry for caring about you guys.


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Don't take it so personally! There is a LOT of information out there and a lot of people on this board are very particular about sorting the good from the bad. Citing sources can be kind of important...

All we can say for sure is what works for us personally. I'd be severely ill if I were to drink a glass of milk - same as if I were to eat some delicous, delicious cheese. So in that respect, I'd just count you lucky.

We're all here to share information and hopefully help eachother out. No one is mad at you for caring...we just want some basis for what you've posted. Something we can physically read.

I understand what MY test results say.

I am trying to relay information from a very up-to-date doctor to help you guys. I only posted because I genuinely care, but I can't do anything if you resist what I say.

My doctor's name is Dr. Bernadette Saviano, and her number is 404-531-0900. Maybe you'll listen to her if you won't listen to me. Otherwise, sorry for caring about you guys.


Courtney - 25

Columbia, SC

Gluten-free since July 8, 2006

Casein-free since October 16, 2006

Went six weeks, and fell back into a deliciously painful world of cheese.

Casein-free (again and for serious this time) December 11, 2006

Stupid cheese addiction....2/07

Dx Hypothyroid in 1993

Dx Gluten & Casein Sensitive through Enterolab 10/06

Dx Adrenal *Exhaustion* 2/07

Originally from WI, I am still in denial over my newfound casein intolerance. I fear I will not be allowed back into the state if I can no longer eat cheese and drink milk. This could pose some trouble over holidays when I wish to visit my family. It also poses a problem involving the severe rage I feel when I have to throw away somebody's unfinished cheese sticks. That is so wrong.

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Citing sources can be kind of important...

When I get my information from a doctor, I can't site sources except her number which I just posted. She gave me a packet of info on the soy which I do not have with me and have requested another one. I doubt it will come soon because her receptionist is incompetent.

All we can say for sure is what works for us personally. I'd be severely ill if I were to drink a glass of milk - same as if I were to eat some delicous, delicious cheese. So in that respect, I'd just count you lucky.

I can't have milk or cheese!!! Just a little half&half in coffee, or goat/sheep cheese....which I find disgusting... but if I see milk as an ingredient I can't eat the food!


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Let's try and keep open minds on BOTH sides of the fence, please.

I don't care if this doctor is not an MD or even if she is a garbage collector--she might be on to something. I'm not dismissing what she says just because she isn't an MD. What if she's correct? Look at dogtorj--his scientificness puts the MD's to shame.

On the other hand, srokie, try to be patient with the people on this board. It's very difficult for people who have spent decades researching their own conditions to hear that maybe something that they have always believed--and was supposedly proven-- might not be true. I don't blame anyone for being skeptical. And the fact that you are drinking half-and-half--well, that is not casein-free. I would agree with you that it might be LOWER in casein than skim milk, but it still does contain casein.

Srokie, how about if you ask your doctor for some sites or sources? You can tell her that we on this board are very leery of "new" findings and like to have more proof!

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Let's try and keep open minds on BOTH sides of the fence, please.

I don't care if this doctor is not an MD or even if she is a garbage collector--she might be on to something. I'm not dismissing what she says just because she isn't an MD. What if she's correct? Look at dogtorj--his scientificness puts the MD's to shame.

On the other hand, srokie, try to be patient with the people on this board. It's very difficult for people who have spent decades researching their own conditions to hear that maybe something that they have always believed--and was supposedly proven-- might not be true. I don't blame anyone for being skeptical. And the fact that you are drinking half-and-half--well, that is not casein-free. I would agree with you that it might be LOWER in casein than skim milk, but it still does contain casein.

Srokie, how about if you ask your doctor for some sites or sources? You can tell her that we on this board are very leery of "new" findings and like to have more proof!

I agree with you and I did ask her for more resources as mentioned in a previous post, but like I said, her receptionist is incompetent so we may not see that for a while. Dr. Saviano sees patients in multiple states and is almost always booked, so she has to rely on receptionists to take care of non-urgetn stuff...

I understand very well how hard it is to understand you may have to further downsize your options for food. I hate it every day, but if I help one person it will be worth it.

My doctor never said I had to be casein "free" necessarily, but you all saw my results.

Lots of people on this site have said soy makes them sick (just google soy and celiac) but I understand they may just ALL have soy allergies. My doctor said all gluten-free products will have to soon exclude soy. I'm not the doctor and I can't say it like she could.... but I do promise to post the soy info as soon as that receptionist gets it to me.


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Srokie, I do believe there is some truth in your doctor's opinion, for many celiacs, anyways. I can't have soy and it was the first intolerance I had after going gluten free. Now I can't have corn and I must be very careful with rice. I would love to see the info once you get it.


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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Srokie, I do believe there is some truth in your doctor's opinion, for many celiacs, anyways. I can't have soy and it was the first intolerance I had after going gluten free. Now I can't have corn and I must be very careful with rice. I would love to see the info once you get it.

I will be sure to post it here and/or to you directly as soon as I get it.


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I think your statement that no celiacs can have soy is far too generalized. Some of us are just fine with soy. Some aren't. Some can tolerate dairy - some can't.

I do think it's great that you are passing on information that you've received - goodness knows we all like to be up to date with what information is out there and available to us. But, to assume that "none" of us can have it is a bit too sweeping.

I'm a little confused though - you mention that you eat butter and drink half/half, and both have casein. And, your results from Enterolab clearly indicate an intolerance, yet - your doctor didn't order you "casein free." Why is that??


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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I think your statement that no celiacs can have soy is far too generalized.

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

Iyet - your doctor didn't order you "casein free." Why is that??

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.


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I have been gluten free for many years now, but have been eating soy and dairy for all of those years, My blood tests and the last scope was very good, which indicates that I have kept to my diet really well. I also had a liver test last fall, which also showed no problems.

If soy and dairy were a problem, wouldn't those be showing up?


Shirley

[save the Earth, It's the only planet with chocolate and wine.

It isn't about waiting for the storm to pass...

It's about learning to dance in the rain.

Gluten free since 1989

West Kootenay.... British Columbia

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Is there more casein in butter than in milk?


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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I have been gluten free for many years now, but have been eating soy and dairy for all of those years, My blood tests and the last scope was very good, which indicates that I have kept to my diet really well. I also had a liver test last fall, which also showed no problems.

If soy and dairy were a problem, wouldn't those be showing up?

I agree with you; it should show up. I'm not the doctor so I don't know ... I'd love to have soy milk because I really miss milk! I wish it were true...


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Is there more casein in butter than in milk?

Absolutely not... well, depending on the milk... but I was told butter is mostly the fat component of milk and not the casein component.


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