Gluten Contamination in Food -- Gluten Free WatchDog

[cyclinglady]

Wow!  I subscribe to the Gluten Free WatchDog.  It is like Consumer Reports (not sponsored by any manufacturer) and tests products for gluten.  Tricia Thompson just published this:

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Here is information about the Gluten Free WatchDog:

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Am I the only one who is outraged?  

 

[manasota]

I'm also outraged.  Sadly, however, I am NOT surprised.  I have suspected this for a long time.  All too often, this is how much of the world works.

$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$

Mostly, I find this very, very, very sad.

Cyclinglady, I DO share your pain and frustration.  Many hugs to you!

[SLLRunner]

Manufacturers marketing in an attempt to glom on to what many see as the "gluten free fad," just to up those sales. Don't these people know how serious celiac disease is? 

[SLLRunner]

Manufacturers marketing in an attempt to glom on to what many see as the "gluten free fad," just to up those sales. Don't these people know how serious celiac disease is? 

[manasota]

1 hour ago, SLLRunner said:

Manufacturers marketing in an attempt to glom on to what many see as the "gluten free fad," just to up those sales. Don't these people know how serious celiac disease is? 

It's quite possible the offenders ARE ignorant about Celiac Disease.  It's also possible it's simply another case of AFAB (Anything For A Buck).  Either scenario is a possibility.

[Gemini]

OK......after looking at all the links and reading the labels on the products, I have to play Devil's Advocate here...which I am sure will surprise no one. 

Am I outraged?  That's a little too far up the anger spectrum for me.  I guess I look at things differently than many. This annoys me, it truly does, and no one should be able to label something as gluten free if it contains an ingredient that cannot be in there if it is supposed to be gluten-free.  However...........after reading the ingredients list on all the packaging, it was clearly plain to me it was not gluten free and I would have put it back on the shelf.  Probably call the FDA, for whatever worth they are, and lodged a complaint.  This will happen and this is the main reason why you have to read labels each and every time you purchase something. My other annoyance with a segment of the gluten-free crowd is when diagnosed with Celiac Disease, it is essential you buy one of the great books out there on the disease and educate yourself.  That means learning how your GI tract works and how to eat gluten free correctly. I don't care how you do it...whether you read or talk with a reputable dietician, just do it.  No excuses!  If you do this, then you will be able to easily tell what is safe and what is not.  Is this way infallible?  No, nothing is, but its as close to perfect as it gets. This disease, like diabetes and others, relies heavily upon personal responsibility and knowledge. There are many scams in this world but if you pay close attention to detail, which the ingredients list would fall under, your answer is there.  If still in doubt, don't eat it!  Does this let companies off the hook?  No...but it sure beats being glutened all the time because people aren't paying attention. You cannot just look at a gluten-free label because it's easy and grab and eat.  We don't have that option.

My guess is that the companies involved are ignorant about Celiac Disease.  They see all this testing protocol involving numbers and think if they bring those numbers down to acceptable levels, we can eat the barley malt.  Duh!  And you know some people will and that's why their products sell.  The "anal about their food" Celiac's who actually strive to be as gluten-free as possible like all of us, are a small minority and that's fine.  I read labels and figure out myself if something is safe to eat and it has worked well for me for 11 years.

I won't even comment much on the "sour dough bread that is safe for Celiac's to eat" nonsense.  I know it's hard for some people to change the type of bread they have eaten their whole lives but it can be done without ruining your life. I figure the diagnosed folks who are still very new to the diet only have to eat it once and get really sick before they learn what utter nonsense that is.  Or they will be smart and come on here and ask.

There is no money in treating Celiac Disease yet so no respect or interest.  That will change when Big Pharma produce the "cure"!  Then, we'll be all over the news. 

 

[cyclinglady]

The fact is that many celiac patients do not heal.  Many patients, who truly believe they are adhering to a gluten free diet, are not recovering. Why?  Why did I get glutened this very week?  I am very intelligent, read labels, eat mostly whole foods, have been gluten-free for three years, kept my husband gluten-free for 15 years and yet it is still happening to me (took a big hit 7/2015 too)?  

I came across this article regarding this very subject of trace contamination and the diet recommended by leading experts like Dr. Fasano to promote healing.  Yep, it allows for no processed foods.  Just what most of us have recommended over and over to newbies on this forum.  I have posted this article on celiac.com several times.   When I read the article, one of the issues that struck me was that gluten is affecting even those folks who are diet compliant.    Can they all be careless and stupid?  I think not.  Here is the article:

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And for easier understanding read this blog on this subject from Jebby, a celiac.com member who is an MD (premie baby doctor) and has celiac disease:

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Back to my glutening this past week.  What did I eat?  A processed salad clearly marked gluten free by the NSF.  I read the ingredient list.  No gluten.  Did I do my due diligence?  No.  I accepted this certification.  After getting sick, I did some research.  The company processes other salads that do contain gluten.  The company has had recalls for mis-labeling in the past (other allergens, not gluten).  So, can I really trust them to get it right?  No.  I should have researched more instead of caving into convenience.  

For all the newbies out there.  Your best bet is to stick to a very strict gluten-free diet that was recommended by the study.  After healing occurs, chances are you will be better able to handle traces of gluten so a regular gluten-free diet containing processed foods may very well be safe for you.  

Like, Jebby, I went gluten free as my doctor instructed.  Wait?  Instructed? He just handed me a list of supposedly gluten-free restaurants.  Told me to go gluten free and that was that!  (I give him big credit for even catching my diagnosis!)  I had forgotten all the trial and error my husband suffered through the first year.  I thought I was more celiac savvy, but I was not.  Eventually, I learned that a whole foods diet is really the best for me.  gluten-free processed and junk foods (e.g. cookies and other goodies) should be eaten sparingly.   Better overall for anyone's health and less chance of getting glutened. 

We have a long way to go in learning how to best treat, manage and advocate for celiac disease.  Let's keep up the spirit of conversation and exchanging ideas.  

Have a great day!  

 

[Gemini]

Sorry....I just don't buy into this hype that many Celiac patients do not heal.  I have been doing this for a very long time and have seen a lot over 11 years and am surprised how people "follow" a gluten-free diet.  If you do it right, then you should heal, unless you have underlying problems or don't fully understand how to do the diet correctly.  Being glutened once in a great while will not keep you from healing, either.

I see many Celiac's cheat and then wonder why they do not feel good.  My new doctor, who is very well versed on Celiac to my surprise, gets really annoyed because she says many patients are either not compliant or fail to learn how to follow the diet correctly.  I also see this with the diabetic population.  Lots of cheating going on and poor dietary habits which they think can be remedied by more insulin.

The protocol you quote is one that every person should be following, not just Celiac's. Healthy eating of whole foods, with some carbs/processed foods thrown in.  I do eat some processed foods because, as a classic Celiac, I am thin and can always use a few extra pounds. I cannot be that lucky that I am magically avoiding all these so-called contaminated foods.  I know they exist but I tend to buy very mainstream brands, from reputable companies that do a good job of keeping their food clean. You do have to be careful but that's where education comes into play and experience. I have not been glutened since Sept. of 2014 and haven't found that hard at all.  I also do not eat out that much and have found that's where  you are most likely to be hit, not from packaged foods.  You know how I got glutened?  Like you, it was a convenience thing. I got hit by a salad from a restaurant.  I ate out because I was leaving on an international trip the next day and there was no food in the house.  I thought a salad would be safe.....but not from Wendy's!  It was the only fast food place I ever went to because they had salads.  Never again!

I was able to eat some processed foods from good companies while early in the diet because I had to. I was 20 pounds underweight and it  is really hard to gain weight on a whole foods diet.  But, my experience is that many of the processed foods out there are safe for us but you have to make sure you pick good, mainstream companies. Do the research, as you should do. If that many companies had contaminated foods, no one would heal. But many, many people heal well so there are more things at play here than just saying processed food is contaminated. When food and special diets are involved, people get very emotional and don't always do what they should.