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

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

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

You go, girl!!!!!!!

:) :) :) :)

elye Community Regular

Way to go, Sarah! :):)

Lisa Mentor

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

Wow! Actual concern from a major company. Amazing.

As stated above, you go girl!

jerseyangel Proficient

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

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

what a responce.

Judy

Ridgewalker Contributor
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

Wonderful!

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

Hummingbird4 Explorer

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

DingoGirl Enthusiast
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

DAMM GIRL!!! B)

Rachel--24 Collaborator

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

Way t'kick butt, Babe!!!

MyMississippi Enthusiast

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

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

Jestgar Rising Star
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

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
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
:lol: Hi, Mom. :D

:lol:

How cute Sarah. :)

Hi Sarah's mom!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.