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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Ridgewalker

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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.

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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.enzymedica.com/products/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!

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You go, girl!!!!!!!

:) :) :) :)

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Way to go, Sarah! :):)

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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.

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Wow! Actual concern from a major company. Amazing.

As stated above, you go girl!

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Sarah---------fantastic !!!!!!!!!!

what a responce.

Judy

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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.)

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Wonderful!

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

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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!

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DAMM GIRL!!! B)

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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

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Jestgar,

Is that a picture of your cat ?? Is he missing??? Looks just like the cat that Foxx news is showing as lost and they are looking for his owner. He weighs 44 lbs. ! ! ! ! :o

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Jestgar,

Is that a picture of your cat ?? Is he missing??? Looks just like the cat that Foxx news is showing as lost and they are looking for his owner. He weighs 44 lbs. ! ! ! ! :o

:)

I saw him on the news too, so I thought I'd give him a little more face time. I think I heard that they've found his owner though...

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HA!!!!!!!!!!!!!!!!!!!!

That's my baby!!!!!!!!

And OHG - I haven't seen that pic in a while and Holy Cow! You look like me - only lot's better

and you know...way younger.

Anyway - most excellent job. Set them straight ... then send them a bill.

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HA!!!!!!!!!!!!!!!!!!!!

That's my baby!!!!!!!!

And OHG - I haven't seen that pic in a while and Holy Cow! You look like me - only lot's better

and you know...way younger.

Anyway - most excellent job. Set them straight ... then send them a bill.

:lol: Hi, Mom. :D

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:lol: Hi, Mom. :D

:lol:

How cute Sarah. :)

Hi Sarah's mom!

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    • A mistake that many of, myself included, made! Don't feel bad about it, feel good that you've at least identified a possible cause. I was faced with a similar choice a few years ago and opted to go back onto gluten for a 'challenge' to see if I had celiac. I kept a food diary during this time and tracked the reappearance of symptoms, some gastro intestinal but primarily neurological. I tested negative for celiac much to my surprise, but the challenge confirmed gluten as an issue, so NCGS is best diagnosis I'm likely to get for now at least.  Your question re fructans is a good one and not easy to answer. The fact you've asked it suggests you've done some research and are aware of the unclear science once celiac is excluded. For what its worth I think that what may happen is that some people who get IBS relief from a gluten free diet are indeed correct to avoid the foods, but incorrect in identifying gluten as the cause.  They may actually be reacting to fructans, polyols, or other parts of the wheat,carbs rather than proteins.  However there are also well documented cases where gluten itself is the culprit, some more info on this here and I believe this is where I sit.   You need to decide what level of uncertainty you can live with. Medical assistance will depend on reintroducing gluten. If you do it with a food diary you may learn more about your reactions, maybe even be able to customise your diet to your own body. Most importantly, you would properly exclude celiac as a cause, which is important because its a serious condition and if you do have it, far better to know for both you and your family who may also want to be tested.  Finally, I collected some links and info here some time ago, it may be useful.  Best of luck Matt
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