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 Sarah Grace's topic in Related Issues & Disorders
      24

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    3. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      Related issues

      I am so sorry you are going through this; it sounds incredibly overwhelming and disheartening to be dismissed by the very medical professionals you're turning to for help. It is completely understandable that you feel lost and exhausted, not just from the relentless physical symptoms like the leg pain, stomach issues, and profound fatigue, but from the psychological...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,150
    • Most Online (within 30 mins)
      7,748
    TheaBr
    Newest Member
    TheaBr
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      Heat intolerant... Yikes

      By Scott Adams · Posted

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Related issues

      By Scott Adams · Posted

      I am so sorry you are going through this; it sounds incredibly overwhelming and disheartening to be dismissed by the very medical professionals you're turning to for help. It is completely understandable that you feel lost and exhausted, not just from the relentless physical symptoms like the leg pain, stomach issues, and profound fatigue, but from the psychological toll of being told it's "just IBS" or that you need a therapist when you know your body is signaling that something is wrong. While it's true that a normal tTG test can indicate that celiac disease itself is being managed from a dietary perspective, it is a major oversight for your doctors to ignore your other diagnoses like SIBO, a hernia, and Barrett's esophagus, all of which can contribute significantly to the symptoms you describe. You are absolutely right to be seeking a new Primary Care Physician who will listen to your full history, take your Barrett's diagnosis seriously, and help you coordinate a care plan that looks at the whole picture, because your experience is not just in your head—it's in your entire body, and you deserve a medical team that acknowledges that. I had hernia surgery (laparoscopic), and it's not a big deal, so hopefully you can have your new doctor give you some guidance on that.
×
×
  • 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.