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Gosh, I Miss My Soy-milk!


Dejaunee

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Dejaunee Newbie

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

made by: HAIN CELESTIAL GROUP, INC. #1-800-SOY-MILK

Your help is greatly appreciated.

Debi M. Brand


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tarnalberry Community Regular

Silk makes an unsweetened soy milk that is gluten free.

Lily Rookie

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.

Lily

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  • Posts

    • ChrisSeth
      Okay thanks Scott. So based on my results will they order more tests to be done? Kind of confused.
    • Scott Adams
      Yes, this sounds right. Let us know when you find out your results.
    • ChrisSeth
      Hi thanks for your response! This is the only other info that’s on my test results for the IgA. The initial testing performed in the Celiac Disease Reflex Panel is the total IgA. If the total IgA is <10 mg/dL, the reflex tests that will be ordered are the Tissue Transglutaminase IgG Antibody and the Deamidated Gliadin Peptide IgG Antibody. If the total IgA is >=10 mg/dL, the reflex test that will be ordered is the Tissue Transglutaminase IgA Antibody. Does that give some insight?  following up with my Dr early next week… thanks again.  And I didn’t eat more gluten than usual during the last 6-8 weeks on purpose. Just a normal diet prior to testing. I had gluten everyday for 6-8 weeks though I’m sure.
    • Scott Adams
      Have you tried sheep's milk and goat's milk cheeses? After my diagnosis I could not tolerate cow's milk for ~2 years until my villi healed, but for some reason I did not have issues with sheep milk or goat milk cheeses.  I also had temporary issues with chicken eggs, but could eat duck eggs.
    • Scott Adams
      This is not a test for celiac disease, but your total IgA levels. This test is usually done with other celiac disease blood tests to make sure the results are accurate. Did they do a tTg-IgA test as well? Were you eating lots of gluten in the 6-8 weeks leading up to your blood tests? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
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