Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Make Your Voice Heard

Ridgewalker

Recommended Posts

Ridgewalker Contributor
Ridgewalker
Posted

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, Open Original Shared Link

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 Open Original Shared Link 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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Ridgewalker Contributor
Ridgewalker
Posted
  • Author

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 Open Original Shared Link

" 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!

tom Contributor
tom
Posted

You go, girl!!!!!!!

:) :) :) :)

elye Community Regular
elye
Posted

Way to go, Sarah! :):)

Lisa Mentor
Lisa
Posted

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.

dksart Apprentice
dksart
Posted

Wow! Actual concern from a major company. Amazing.

As stated above, you go girl!

jerseyangel Proficient
jerseyangel
Posted

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

What a great response :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Judyin Philly Enthusiast
Judyin Philly
Posted

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

what a responce.

Judy

Ridgewalker Contributor
Ridgewalker
Posted
  • Author
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.)

psawyer Proficient
psawyer
Posted

Wonderful!

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

Hummingbird4 Explorer
Hummingbird4
Posted

Your letter to them was fabulous, and I am also impressed with their reply! Good for you! :)

DingoGirl Enthusiast
DingoGirl
Posted
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!

sickchick Community Regular
sickchick
Posted

DAMM GIRL!!! B)

Rachel--24 Collaborator
Rachel--24
Posted

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

Jestgar Rising Star
Jestgar
Posted

Way t'kick butt, Babe!!!

MyMississippi Enthusiast
MyMississippi
Posted

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

gfpaperdoll Rookie
gfpaperdoll
Posted

Good for you!!!!! B)B)

Jestgar Rising Star
Jestgar
Posted
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...

Tewa Newbie
Tewa
Posted

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.

Ridgewalker Contributor
Ridgewalker
Posted
  • Author
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

Rachel--24 Collaborator
Rachel--24
Posted
:lol: Hi, Mom. :D

:lol:

How cute Sarah. :)

Hi Sarah's mom!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    2. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results. Thank you
    3. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to...
    4. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response.
    5. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,831
    • Most Online (within 30 mins)
      7,748
    ATownCeliac
    Newest Member
    ATownCeliac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.