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MySuicidalTurtle

Fyi... Benefiber NOT gf anymore

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My Mom uses Benefiber and on the new one she bought it says:

Ingredients: Wheat dextrin

Gluten Free (less than 10ppm gluten)

What is this about?!?!? I told her not to take it but what should she do? I thought dextrin from corn was okay but dextrin from wheat is not.

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I wouldn't take it. Even if she doesn't get a reaction from it, the low levels of gluten may add up and cause damage (if they don't just cause the damage immediately). I would definitely steer clear.


~Angie~

Gluten free since May 2004

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We ran into this situation last week and didn't know what to make of it. We used to buy it before this "re-formulation".

My understanding is this is how they classify foods as gluten-free in Europe - so many parts gluten per million or something like that.

Despite this, we are not purchasing the new Benefiber. Does anyone know of a substitute (other than Metamucil)?


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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HI all

This freaked me out so i went and got my old bottle of the power..it said ingred...partially (?) such tiny print can't read that word but after that word is --hydolyzed guar gum (100% natural fiber) and it expired 6/06 so there must me a new formulation as was stated above.

I'd love to hear if anyone called the company. i know the pills were not gluten-free when i started back in june of 05.

judy in philly


Judy in Southern CA

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I wrote to Novartis today about this topic (their website did not have an email address - only mail address & phone number) and stated that I understand that to them that 1 part of gluten to 1,000,000 parts of the whole is considered gluten free, but to us it's still unacceptable. I told them to visit our message board and view what people with celiac disease say about products which have wheat/gluten as ingredients.

Advised them that some people with celiac rely on these type of products for most of their fiber. And that we will not buy a product which states GLUTEN FREE when wheat is a component.

So I suppose they'll respond shortly with a form letter.

Now we are looking for substitute products.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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dEB, THANKS FOR WRITING THE COMPANY!

JUDY


Judy in Southern CA

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I just got my most recent newsletter from local celiac group. I guess Benefiber will no longer be gluten-free.


Amanda

Positive TTG 9/05

Positive endoscopy 9/05

Doing well with "Sprue"

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Benefiber now uses wheat starch in their formula. They claim it's gluten free as it's so many small parts per million. We reject this and no longer will buy Benefiber as we feel that the old formula served its purpose and no changes were needed.

We have been calling Novartis Home Health (manufacturer) and writing to them to state our decision and feelings on this.

Has anyone else been affected by this change and have you contacted Novartis as well?

For us this is a serious change as my husband cannot eat fruits and vegetables and relies almost solely on fiber supplements for his fiber.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I was diagnosed three years ago as an asymptomatic celiac patient. My father has celiac and so the whole family was tested, but I have never had bad symptoms; maybe one or two times in my life. Even so, I've been gluten free since my diagnonsense, as I call it, and honestly feel fine.

I started a weight loss regime this year and included Benefiber to ensure that I got enough fiber. I have not had any reactions, but then again, I didn't have any after defiantly driving through Arby's and wolfing down a Beef and Cheddar with curly friends either.

Further, my dad has typical symptoms and he takes Benefiber as well. As in all things related to a gluten free diet, I say test it out for yourself.

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