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Gosh, I Miss My Soy-milk!

3 posts in this topic

Scott, about two plus years back I spoke with you by phone.

I tested positive for celiac disease back in 97. I was hit with it in 94. But you know well how, back then, diagnosis of the disease was rare. In my case it came only after much research and effort on my part and then only after requesting I be tested for it. Given my symptoms were in line with celiac disease.

Reason for this correspondence is: for the past several years I have been able to enjoy but one of the many Soy milks on the market.

Given that the protein is the offending culprit often in celiac disease patients, somehow this one brand had it just right. And as I said, for years I relished the drink and the nutritive value in it.

Ruefully, last year they decided to add organic cane sugar to it. Dang! For me, sugar is out. The enzymes needed to digest it lost from the damage done to the villi before proper diagnosis of celiac disease and the implementing of the subsequent "offender-free" diet.

As I am sure you know, in sever cases eliminating only gluten is not enough. Lactose, sucrose, fructose, etc., all can be problematic to the Celiac patient.

Though I know my case is a sever one, I know I am not alone there. Hence my contacting you today.

I believe there must be others out there who also were limited to this one agreeable product that is now being made with sugar, and as such, no longer agreeable.

I have contacted the company and pressed the need that they return the original recipe for folks with sever celiac, not able to have sugars or concentrated forms of the soy or rice protein.

Seems if they received sufficient calls they would perhaps be inclined to provide this formerly cherished, not to mention nutritious, beverage for those of us with sever Celiac.

The product info is: WESTSOY PLUS; SOYMILK-vanilla or regular


Your help is greatly appreciated.

Debi M. Brand


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Silk makes an unsweetened soy milk that is gluten free.


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Eden Foods makes a Rice/Soy blend that is free of sugar. Soy dream agrees with me, but so far those are the only 2.



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    • Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 
    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
    • In reflex testing they look at a result and decide if the next test is needed.  Another example, some labs only do EMA if the Ttg is positive.
    • Her blood panel is POSITIVE!!!! She's celiac! I don't know what in the world the GI is thinking. That's crazy! The GI obviously doesn't really know celiac. The constipation is tripping her up but celiacs can be constipated as much as they can go the other way and more than 50% of dx'd celiacs presented with NO GI issues. Keep her eating gluten until you get the results of the endoscopic biopsies.
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