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Make Your Voice Heard


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#1 Ridgewalker

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Posted 01 August 2008 - 01:52 PM

The following product is supposedly meant for non-Celiac gluten intolerants. It should not be used as a treatment for Celiac Disease, and (considering the long-term health effects of even small amounts of gluten) to do so could be dangerous. The language on the webpage for this product is confusing and misleading, and I believe it needs to be changed.

Take a look for yourself, here.

Although Enzymedica states that GlutenEase "is not formulated to prevent celiac symptoms," the advertisements go on to describe Celiac Disease as a "Cause of Gluten Intolerance." Look at the second paragraph under that heading. It states:

"Gluten exhibits a unique amino acid sequence which creates inflammation and a flattening of the villi of our intestinal tract. The villi provide the intestine with the ability to absorb nutrients from the foods we eat, thus damaged villi can lead to responses such as malabsorption, nutrient deficiencies or other digestive disorders."

Since damaged, flattened, or blunted villi are considered to be a defining characteristic of Celiac Disease- not non-Celiac gluten intolerance- I feel that the inclusion of this paragraph is misleading, and frankly down-right bizarre, for a product that is supposedly not aimed at Celiacs.

If this doesn't bother you, ok.

If you think this needs to be changed, click here to tell Enzymedica about it.

One last note: This thread is not intended to further inflame an already hot topic. While everyone is free to post whatever they like, this thread is also not intended to be a place of major debate. It's simply an opportunity to make your voice heard, and a place to post any responses you get from this company, if you wish.

Thanks for your time.
  • 0
-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007
--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.
--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.
--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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#2 Ridgewalker

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Posted 01 August 2008 - 03:14 PM

Well! It may not be necessary to bombard them with messages after all. I've heard back from them, and it looks like they're going to change the webpage. After my comment that I sent from the above link, this man, Dave Barton, wrote me back. His first response mainly consisted of a long excerpt from a book on Autism.

So I wrote this back:

Mr. Barton

Thanks for your response.

I actually find the relationship between Autism and gluten very exciting, and expect to see huge strides being made now and in the future. It doesn't, however, really have much to do with my current concerns.

You noted that both non-Celiac, and Celiac sufferers have used the product, with some finding relief. I'll be the first one to jump up and say, "It's any individual's prerogative to try any supplement they want." But I do believe that it's a company's responsibility to be accurate and up-front about their products. So I'll be specific on the problem(s) I'm seeing.

This is a section from the webpage http://www.enzymedic...ucts/GlutenEase

" Cause of Gluten Intolerance

For many individuals who consume wheat or dairy products, the
particular proteins gluten and/or casein are difficult to digest and
can lead to intestinal inflammation, malabsorption and a number of
disorders including Leaky Gut or other syndromes.

Gluten exhibits a unique amino acid sequence which creates
inflammation and a flattening of the villi of our intestinal tract.
The villi provide the intestine with the ability to absorb nutrients
from the foods we eat, thus damaged villi can lead to responses such
as malabsorption, nutrient deficiencies or other digestive disorders."

The first paragraph is perfectly true, and I don't have any issue with it. The second paragraph is another story. Gluten does not do that to just anyone, or even just anyone with gluten intolerance. The only way that paragraph is true, is if by "our intestinal tract," you mean Celiacs' intestinal tracts.

In other words, if you are gluten intolerant and you have flattened villi or damaged villi, then you have Celiac Disease. In fact, you will be officially diagnosed with Celiac if you have damaged/flattened/blunted villi, even if you're asymptomatic.

Discovering damaged or flattened villi via small-intestine biopsy is currently THE defining, gold-standard method of diagnosing Celiac Disease... NOT non-Celiac gluten intolerance.

Why does this bother me so much? Because the whole point of GlutenEase makes it easier for people to be more relaxed about their diet. They don't have to worry so much about eating a risky food, or getting
cross-contamination at a restaurant.

For a Celiac, relaxed vigilance can be deadly. There is absolutely no evidence that GlutenEase prevents or reduces an autoimmune response in a Celiac (which is why you guys have to put the statement, "GlutenEase
is not formulated to prevent celiac symptoms" on your webpage.)

That autoimmune response causes damaged villi in the small intestine, malabsorption, and so many terrible long-term problems, such as: infertility, osteoporosis, miscarriage, and cancer.

These awful health problems (and even DEATH) are well-worth being abundantly clear about who GlutenEase is meant for.

Currently, Enzymedica is not being nearly clear enough.


End of my email.

Mr. Barton's Response:


Dear Ms. -------,

I absolutely see your point. I have never read the paragraph in the context you're providing and can now see how it may cause confusion. Thank you for identifying the specific point. I will take this to our website
administrator and tech team to make the appropriate changes as soon as possible. The earliest I can do this is on Monday Aug 4th. We are launching a new website so this change will be imperative to the next site.

Please let me assure you that in no way did we want to imply a reference to Celiac disease and honestly from my own personal perspective being one of the team members that tried to write the article in an informed neutral way it was not our intention to mislead anyone. The key to seeing your point was the your patience in identifying and clearly explaining your point of view and I am in agreement with it and will do all I can to change it as soon as possible.

May I ask, would you like to make some suggestions on appropriate wording for the correction of this website and our upcoming new one?

Sincerely,
Dave Barton
dave@enzymedica.com
888-918-1118



This is a fantastic response, and an opportunity!!!

I plan on writing him back later this weekend. Any suggestions are welcome- you can either post them here, and I'll include them, or you can send them yourself!
  • 0
-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007
--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.
--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.
--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

#3 tom

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Posted 01 August 2008 - 03:35 PM

You go, girl!!!!!!!
:) :) :) :)
  • 0
>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#4 elye

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Posted 01 August 2008 - 03:43 PM

Way to go, Sarah! :) :)
  • 0
Emily

diagnosed type one diabetic 1973
diagnosed celiac winter 2005
diagnosed hypothyroid spring 2006

But healthy and happy! Posted Image


11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.
--Pierre Joseph Proudhon (1809-1865)

#5 Lisa

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Posted 01 August 2008 - 03:51 PM

WAY TO GO SARAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This just goes to show the power of passion. The Golden Yeti Award goes to you. ;)

...and don't forget to take them up on their offer.
  • 0
Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#6 dksart

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Posted 01 August 2008 - 04:13 PM

Wow! Actual concern from a major company. Amazing.

As stated above, you go girl!
  • 0
"...I tried to explain to the waiter that I could not have anything with flour so he took the flower off the table..."

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#7 jerseyangel

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Posted 01 August 2008 - 04:24 PM

Sarah--that's fantastic!!!! Way to go!! :D :D

What a great response :)
  • 0
Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

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#8 Judyin Philly

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Posted 01 August 2008 - 04:49 PM

Sarah---------fantastic !!!!!!!!!!
what a responce.
Judy
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Judy in Southern CA

#9 Ridgewalker

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Posted 01 August 2008 - 05:02 PM

The Golden Yeti Award goes to you. ;)

WOOHOO!!! :lol:

Thanks everybody. I'm going to write him back Sunday evening, to give people a chance to post any suggestions here. (And of course, everybody's free to write to them yourselves.)
  • 0
-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007
--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.
--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.
--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

#10 psawyer

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Posted 01 August 2008 - 05:39 PM

Wonderful!

Sarah, you have made a difference today. Be proud of yourself.
  • 0
Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator

#11 Hummingbird4

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Posted 01 August 2008 - 05:43 PM

Your letter to them was fabulous, and I am also impressed with their reply! Good for you! :)
  • 0
Diagnosed Celiac in June 2008 by biopsy and blood tests.
DQ2.2 (HLA DQA1*0201:DQB1*0202) and DQ2.5trans (HLA DQA1*05) positive.

#12 DingoGirl

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Posted 01 August 2008 - 06:13 PM

This just goes to show the power of passion. The Golden Yeti Award goes to you. ;)


:lol: Indeed it does.


Wonderful!

Sarah, you have made a difference today. Be proud of yourself.


Yeah, what he said!!!!!!!!!

:)

good work, Sarah!
  • 0
SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

#13 sickchick

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Posted 01 August 2008 - 07:31 PM

DAMM GIRL!!! B)
  • 0
Collette

Positive Bloodwork Oct 1st 2007. Gluten-free 3 YEARS Oct 1st!
Dairy & Soy free since Dec 1st 2007.
Potato free since January 3rd 2008.
Remaining Nightshades since April 1st 2008. Back on September 2010. :)
Developed Rice & Tapioca & Corn Intolerances...
NO Carageenan.

In a constant state of evolution... sending love! :)

#14 Rachel--24

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Posted 01 August 2008 - 10:56 PM

Sarah,

I have to say it. :) This response from Enzymedica is probably one of the best I've seen from *any* company. There is concern and sincerity in his reply....and you didnt wait days for it to come.

Wow! Actual concern from a major company. Amazing.


Yes it is. :)

Good Job Sarah!! :D
  • 0
Rachel

#15 Jestgar

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Posted 02 August 2008 - 07:13 AM

Way t'kick butt, Babe!!!
  • 0
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