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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.
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
No I haven't read your posts and no I'm not going to; this is just FYI because you may recall I'd give you info the second I got my hands on it and I keep my word.
Someone said gluten is only dangerous if ingested... Here is a doctor saying it is dangerous if it is inhaled. I am making no comparisons to anything I have previously said so don't go yelling at me about inhaling toilet paper; I won't even be reading your repsonses. Just wanted to share info since you all demand sources.
From Clan Thompson's latest newsletter:
Dear Dr. I have biopsy confirmed celiac disease as well has what appears to be DH rash on my elbows, buttocks, ankles and scalp. I am on a very strict gluten free diet and my blood tests are coming back normal so I believe I understand the diet and am rarely eating gluten. The rash has been gone for almost a year. My question is this. I work in a very small office without much air movement except with a fan. One of my new office mates is munching on pretzels most of the day every day we work together.[big bags not just snack size] I have re-developed the rash and my muscles and bones are hurting like they did before going gluten free. I think that I am breathing/swallowing enough of her pretzels to react to them. I reacted this way on a school field trip to a sheep barn which was full of rye and oats on the floors and animals. I have nicely asked my co-worker to refrain from eating the pretzels but she seems to be angry at me for even asking. Another co-worker has severe peanut allergies and we can't eat peanuts in the room when she is present but I can't get the same consideration. Am I over reacting? I have looked everywhere for an answer about inhaling gluten but haven't found anything on it. Sincerely, Christa
Dear Christa, "Inhaling gluten" is essentially the same as eating gluten. If there is enough in the air to inhale it, it then sticks to the mucous membranes of the throat and it is swallowed. I have seen a person who worked in a bakery as well as a farmer who clearly reacted to inhaled (and subsequently swallowed) gluten. Sincerely, John J. Zone, M. D.
Also, the celiac at my college who told me about Kimberly-Clark said she got the info by calling the company. I don't care if you believe me or not. It made a HUGE difference for her when she stopped using Kimberly-Clark products.
My next appt with Dr. Saviano is Feb. 2nd and I will post what she says about soy. I will also post the info she gave me a while ago about soy as soon as I have it.
You know what, forget you guys. Use all the flour you want. Obviously nothing I say is good enough for any of you. I met a few people on here who I will keep in contact with, but as for the rest of you, you obviously could care less about getting help unless some MD supershot tells you all the info. This is my last post, thanks for shutting me down again when I truly cared about you guys. You have the right to be skeptical but not to completely not believe me just because I'm a new celiac. I happen to have a doctor who is probably far more ahead in her "time" than most of the people who treat celiac. Sorry you don't care to benefit from that.
I'm NOT going to be checking the replies to any more of my threads so don't bother posting. Please don't bother. The only thing I will do on this site is get the info from my message box on how to contact the few people who cared what I said.
Again, don't reply to anything I've said unless you want someone else to read it. I'm done here. I've found a doctor who gave me dramatic blood test turn-around results in 6 months because she knows what she's talking about so I don't even need this site; just thought I'd share what I've found. Say whatever you want to about me or my doctor; it doesn't change the fact that I'm rapidly on my way to recovery.
I was told by that celiac friend of mine that it was Charmin and Bounty, and when I asked for clarification, she said it's anything made by Kimberly-Clark. She is extremely sensitive and wouldn't tell me something like that unless she was having a reaction to it.
It is too true, and I wouldn't have posted it if I weren't sure. I know you are all skeptical, but I'm trying to help you.
Why would a newsletter that and EXTREMELY sensitive celiac I know gets completely make up their info? This girl was feeling bad for a couple of months until she discovered the Kimberly-Clark fact, and hasn't had a problem since. You can feel the flour if you touch Cottonelle. It's just a little powdery feeling.
Planter's DOES dust their nuts with flour to keep the oil down. Dr. Saviano is a celiac herself, and she has contacted companies time and time again about this stuff. I don't care what they report - you have to ask for the Biochem department if you want real answers. She knows what she's talking about and she would not tell her clients false information just for the heck of it. She has treated way too many celiacs who have had problems with these products to be making it up. She had a client who was reacting to Crystal Light and by doing her own research with the Biochem department, she discovered the truth.
Just because the labeling law is in effect doesn't mean companies put everything on the label. Or that they put the whole story. They can pay a fine and not put it on there. Why? I don't know. Obviously to make us miserable.
You have every right to be skeptical, and if you choose to ignore me, that's your choice and you can use / eat anything you darn well please. I would not post anything that I was not sure of. The REASON I'm posting it is because you would have trouble finding this on your own. Call Dr. Saviano's office if you don't believe me. I posted the number many times.
I don't know if this topic has been addressed or not yet, since it's not "new research" (and it's not from Dr. Saviano, haha) - I got this information from a celiac at my college, who got it from a celiac newsletter or magazine.. or something...
Anyway, any toilet paper and paper towels made by Kimberly-Clark are dusted with flour to make them more absorbent. (I don't know if it extends to tissues or not, but I'm guessing it does.)
This includes Charmin, Bounty, Cottonelle... can't think of any more off the top of my head.
I use Brawn paper towels and Angel Soft or Quilted Northern, which are made by Georgia Pacific.
SIMILARLY: I heard that Planter's dusts their nuts with flour to cut down on the oil. Again sorry if this is old info. They don't put it on the label and are paying a fine - they have been given a time limit.
I also heard that Crystal Light adds flour to their powdered drink mixes to keep them from caking up. They also do not put this on the label but I can't remember if they're paying a fine, or what the story behind it is.
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.
I didn't start posting when I was diagnosed because I was just too sick. I barely had the energy / willpower to get through each day with the difficult new diet on top of everything else. Now that I'm feeling better I have the energy after work to see who else is out there suffering with me.
I am extremely lucky that I found Dr. Saviano. Most people suffer 11ish years before they are diagnosed, and I only had 3 years of suffering (about a year of unbearable symptoms). Had I not found a competent doctor I'd have had to drop out of school because I couldn't get out of bed ... and if I got out of bed I couldn't read or concentrate at all - it was taking me 11 straight hours to write papers that I was interested in writing!!
And the way I found out about her was truly a miracle - my mom and I were visiting a church friend in the hospital (who was there for us when my dad died) and as I was standing there thinking I was about to faint and not knowing why, another lady from the church who was there told us about this nutritionist she was seeing and how she had been diagnosed with celiac disease. I certainly remembered that after I could barely stand up from fatigue at age 19. Then I went to France for 5 weeks and I ate a LOT of bread. Every single meal. Bread, bread, bread... baguettes... sandwiches... eclaires... everything. I called my mom and asked her to make me appointments with my primary care doctor and this "nutritionist" for the day after I was supposed to get back to the US. Dr. Saviano immediately told me I was not absorbing vitamin B after just listening to my symptoms.
About the cello - I played piano for 11 years and really didn't like it, but I've been playing cello since 6th grade and I love it. It's a gorgeous instrument. I play in my colleges *incredible* orchestra, and I'm a music major as well as a French major. I've been playing in orchestras since I was 12... I don't know what I'd do without it! It's really amazing to show the audience just how hard we've worked to bring that performance to them.
I absolutely agree! Unless it says (from corn) after it, I refuse to eat it.
Labels are not reliable. Planters dusts their nuts with wheat to keep them from being oily, and they just pay a fine not to put it on the label. They've been given a time limit but I see no help in sight. ... Stupid honey roasted peanuts I used to eat like every DAY!!
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
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?
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.