Monday, January 22, 2007

Mustard Seed Market - GF newbie day recap.

This weekend, we attended the Mustard Seed Market's monthly gluten-free tour for those newly diagnosed with Celiac Disease, Wheat-Intolerance, or those that just suspect they have an issue that could be addressed by a gluten-free diet. Needless to say, I have long been aware of my inability to consume gluten; my wife and I were in attendance to possibly promote our book (which the store sells) while also answering questions the GF newbie crowd had and learning what others are going through.

The event was interesting. Interesting in that the event really furthered my views of why so many people are absolutely confused about Celiac and GF diets, and Celiac Disease as a whole. It would seem that such an event (a monthly GF familiarization tour) would be a good thing for newly diagnosed persons, especially given how much seemingly contradictory information there is published about CD and gluten-free diets. But, after attending this week, I have mixed feelings about the effectiveness of this tour for a multitude of reasons.

I'll get back to my recap and reasoning in a bit. But, let me start near the end of the gluten-free tour-day, since that is what I have the best memories of...

Product Reviews:

We, of course, went shopping in the store once the GF tour was finished, and stocked up on a few items we regularly use. One necessity around our house is the Kitchen Basics Vegetable Stock, which is gluten-free and an excellent stock for homemade soups or a flavorful alternative to cooking with water when making rice or quinoa - the sodium levels are reasonable too. Another product I like is the Pocono Cream of Buckwheat, which I have not easily found other than by mail-order; so, I grabbed a few boxes of that as well.

And, the Mustard Seed Market had some various gluten-free products out for tasting and sampling. This was certainly a worthwhile investment for them, since one of the products they featured was the Glutino Gluten Free Pretzels. These pretzels are awesome! I had a few of the GF newbies try them out and tell me what they thought, since some of these people have eaten the real thing quite recently (I wanted to make sure my memories of a "real" pretzel were accurate), and they all agreed the pretzels were indistinguishable from wheat-based ones. Lucky for me, Glutino has a "family pack" size (14.1 ounces) available, which was on sale for $4.99. A couple of bags of those made their way into my shopping cart. Sure, they cost more than normal pretzels, but with this larger size bag, they are not astronomically priced - so, that's an improvement.

They also stocked an Applegate Farms brand of deli meats that was certified GF in addition to being organic and free of any hormones or nitrites and all the other less than desirable ingredients many such meats contain. It was so nice being able to finally pick out a couple lunchmeats without worrying about whether or not they were gluten-free. As soon as I returned home, I made a sandwich of smoked turkey (using Laura's French Baguettes from the prior day) . Wonderful! I have not had a good deli-type sandwich in ages.

So, enough of the gluten-free product reviews. Let me get back to reviewing the newbie tour...

Scene I - Attendance:

The day started with everyone meeting in a nice office room upstairs in the store. Half the attendees (that showed) showed up late, and out of the group that registered for the even, less than half even made it at all. As the event-leader said, with "free" events like this, people feel less obligated to follow through than if they had paid for it. Sad. But, true. This makes planning nearly impossible of course. But, the show went on with a smaller crowd then anticipated.

We went around the room and introduced ourselves and told a quick story of why we were there. This is where things start getting interesting. Out of the group of nine people (two of which were my wife and I, and one was the tour-leader), only one newbie was a diagnosed Celiac. One man was quite sure he had some issues with wheat and other gluten-containing grains, but had yet to try remaining wheat-free or gluten-free for even a couple weeks (that was the plan though). Another lady was allergic to everything basically (she thinks) - gluten, celery, milk, nuts, eggs, molds, and more. Another was a vegan, and since he showed up late, I'm not sure what exactly his story is. Two were spouses or friends along for moral support.

So, the group of "GF Newbies" was not exactly a homogenous group to say the least. With only one among them knowing for sure they had to be on a gluten-free diet, it was not quite what I expected. But, they were all interested in giving gluten-free eating a try for various reasons.

Scene II- The Gluten Conspiracy Unveiled:

So, the tour-leader passed out some photocopied material (or printouts from web-sites) from various sources, and began to review that information. I was fine with this until the leader's personal paranoia about a rampant corporate conspiracy to push gluten (on the population as a whole) was introduced.

Yes, that is right -- you heard it hear first (unless you were at the meeting): corporate America is pushing wheat, barley, rye and all the gluten-containing products on us (the entire population mind you) even though they know that gluten is bad for us all (whether Celiac or otherwise), because it is in their best interest for profits, and "it would kill the economy if they switched products to be gluten free". That was it -- I couldn't take this ridiculous spew much longer! (though, I held my tongue).

And, she went on to say how a select group of enlightened persons (herself included) know how a full one-third of the population is gluten-intolerant!! Wow! I guess all these studies to the contrary (scientific studies at that - placing the number at 1:133), must all be wrong! Give me a break! This is not the type of information that gluten-free newbies need to hear in my opinion. I don't know what the personal agenda behind this diatribe was (though I suspect it has to do with the person's occupation as a PA at a place that deals with allergies and more), but it was getting a bit ridiculous. And, it didn't end here.

We were being told all about the evils of gluten, and how it is the cause of all sorts of things like Autism, Alzheimer's, MS, Parkinson's, Migraines, Fibromyalgia, and a few others. The leader's opinions about how gluten-exposure was causing all these issues, especially the late-life issues like Alzheimer's, was question by someone in the group that mentioned there are even gene-tests that exist for correlating the potential for Alzheimers - at which point we heard about how genes can be modified throughout one's life. I'm sorry, but I have a rather solid grounding in science, and this was all definitely pseudo-science at best. But wait, there's more!

Someone asked about why, if gluten is so terrible, some people don't develop Celiac or gluten-intolerance until later in life - 30's, 40's, 50s. The answer involved suggesting that these late-life-affected persons had always had a problem, and if you looked back into their earlier years you will find these same people had learning disabilities, autism, and/or other issues. Once again, give me a break! This gluten-conspiracy had reached a peak. And, out of all the persons I know with Celiac Disease or gluten-intolerance, I have yet to meet any of these later-year diagnosed ones (myself included) that ever had learning disabilities or issues when young. In fact, many I know are, and always have been, above-average performers all through their educational and/or professional careers.

So, needless to say, although I was trying to listen to this presentation, I couldn't help wondering what was next, and moreover, what value this was to anyone. At least the handouts had some good information - like, which grains and ingredients are safe and which are not, what symptoms are associated with Coeliac Disease, and a list of products in the store that are GF. But, this constant interjection of pseudo-science was out of control. And, just as I can no longer take it, Thank god... it's time for the actual store-tour.

Scene III - The Gluten-Free Store Tour:

We finally make it down to the store floor, and begin our winding back and forth through the aisles looking at labels and seeing examples of what is safe and what is not. This sounds straightforward enough, but enter the inconsistencies and personal opinions of the tour-leader, and the value of the tour degrades quickly.

Early on, we are shown the lovely GF meats (which I later purchased). Simple. They are all clearly labeled GF. Next, to the alcohol section, where there were 3 beer choices: New Grist, Bard's Tale, and Yinpu Black Rice Beer. She tells everyone that New Grist and Bard's are fine, and that although we can't quite be sure of whether the Yinpu is created in a dedicated gluten-free facility, that it is fine too.

I ask "how about A-B Redbridge?" The answer is conflict #1. I am told that, although this store doesn't carry it, their other store location does. But, she would not endorse it as gluten-free. Why, I ask?... Because she feels it is most likely that A-B is not producing it in a dedicated facility. And, how does that differ from YinPu (which she is OK with), I ask?... Because A-B is a big-corporation and all. So, here enters more of that unsubstantiated opinion that has nothing to do with offering proper and consistent advice to gluten-free consumers. Lovely! (not!)

We move on to the bakery section, where some stored-baked gluten-free dessert items are out for taste sampling, along with some samples of packaged gluten-free products from Pamela's and others. The labels for each product are clipped to each sample plate. I clearly see the "this product has been made in a facility shared with wheat and gluten-containing items" (paraphrased, but you know the warnings) on the items baked within the store itself - including a lemon layer cake. I watch as the group-leader immediately consumes both the packaged products and the store-baked "shared facilities" ones. Needless to say, I'm thinking back a mere two minutes to the comments about how A-B has the (suspected) heinous shared-facility for producing RedBridge Beer. Am I surprised by her actions -- absolutely not! In fact, it fits perfectly.

The tour continued down frozen foods aisle, at which point someone asked why the bagels and a few other items were refrigerated. Her answer was that, being gluten-free, they "would quickly turn into science experiments" otherwise. Wow! I didn't know that was unique to GF products! It's amazing what pseudo-science I'm learning today.

A GF Oats discussion arose when we were near the oats products, and though the store does not sell any certified gluten-free oats, she was pushing McCann,s Irish Oats as a solution if they were going to eat oats, claiming they tested so much safer than others - especially those mass-produced Quaker ones. I tried to tell her how this was not necessarily accurate, since the levels vary considerably based on samples. Here's an excerpt from an article whose basis is the New England Journal of Medicine publication on a study about Gluten Contamination of Commercial Oat Products:
"On the basis of the mean gluten level in the two extractions, 3 of the 12 oat samples contained gluten levels of less than 20 ppm. The other nine samples had gluten levels that ranged from 23 to 1807 ppm. All three brands of oats had gluten levels above 20 ppm in at least two of the four samples tested. Ranges according to brand were as follows: McCann's, below the limit of detection to 725 ppm; Country Choice, below the limit of detection to 210 ppm; and Quaker, 338 to 1807 ppm."
You can see how, depending on the luck of the draw, you could get a Quaker Oats sample that had 338ppm and a McCann's of 725ppm. If anything, in this particular test, Country Choice was the best average level of contamination - but I have seen other studies where they were much higher than even Quaker. Fact is, if you are Celiac, avoid oats unless you buy certified-GF ones. Back to the tour now...

We continue through all sorts of products. Basically, the food-selection advice could have been summarized as: look for the words "gluten-free" on the label. Over and over that was the advice. Then came the Blue Diamond almond-thin products which she quickly recommended, and pointed out how the box says something about being recognized by the Celiac Association or such. But, I pick up the box and the label clearly says "made in a shared facility that processes wheat,...". Once again, time for some contradictory opinion. In this case, I am told that it is OK. (note: I do eat the Blue-Diamond products - their web site claims they are gluten-free)


Scene IV - Finale:

Well, actually I began with the finale :)

But, at the end of this tour, I had a few of the tour attendees discuss their tour experience with me, and whether what they heard was really accurate and what my own experiences with Celiac and living gluten-free were. Fact is, as I suspected, these folks were utterly confused.

The tour-guide never broached the subject of how many foods are gluten-free even though the labeling didn't explicitly say. Sure, it's easier if labeling says "gluten-free". But, there are tons of products that are still safe even though they do have such obvious labeling. I told people about the online gluten-statements from various manufacturers, and how many of these "safe foods lists" are available on glutenfree / celiac forums.

The event also didn't breed any allegiance to the Mustard Seed Market from what I could tell, especially when a couple talked about how much they like Whole Foods Market (strange, since the nearest one is a 2-hour drive away). This tells me the tour surely didn't sell people on why to shop at this store instead of going elsewhere. I did take time to let people know that the gluten-free selection at the Mustard Seed is actually rather good - I can find most things I need to bake with and eat there.

So, that is behind us. We did take some gluten-free carrot cake cupcakes with us, and handed them out to those in the group that could safely eat them (since they had Walnuts in them, at least one person was excluded). Those were a hit! And, I think it convinced at least one person considering a gluten-free lifestyle that there really was hope for great tasting GF foods. We were also able to point out some really great GF products the store carries, hopefully ensuring people's first gluten-free eating experiences were good ones.

I do not think I will be attending any future monthly events, especially not with the current tour-guide. I can not support the constant unsubstantiated information and opinions she was spouting, and I fear that if I was to attend again, I would not let many of these statements pass without directly challenging her. And, in respecting current and future gluten-free newbies, I'll not attend, since arguing points I've mentioned would just to add to the confusion of the situation for these inexperienced glutenfree prospects.

I sure hope everyone newly introduced to Celiac and Gluten-free living eventually finds accurate and factual information that is not tainted with personal opinion and gluten-conspiracy theories. I'd suggest attending a regional Celiac Conference with well-known and well-respected authorities in the field as a great way to separate fact from fiction and opinions. That is not what this event offered.

10 comments:

Sheri said...

All I can say is this - unbelievable.

Mike Eberhart said...

Sheri, I'm with you on that. If my wife and I hadn't heard and seen it all, it'd be hard to believe.

Erin S. said...

Mike, sorry you had such a disappointing experience on this tour. In theory, it sounds like a great idea. But with uneducated tour guides giving conflicting descriptions of food, I would also be skeptical.

As for the Glutino Pretzels... I LOVE THEM!! I just bought a package at Fairway last week and they are just about gone. I have been dipping them in everything from hummus to peanut butter and even pretzel. I had my non-gf friends try them and they all agreed they tasted like wheat pretzels. And $4.99 a bag is a steal, at least by NYC standards.

Lynn Barry said...

WOW!
This reads like a science fiction novel. The planet Glutonium and the evils within. Yikes!
Great detailed accounting of a very strange day, for sure.
I think you and Laura handled it with grace and dignity. I agree, don't ever go again.
I am amazed when I meet people with celiacs and they ask me if eggs and milk have gluten and other questions that tell me they have no clue what it is all about and may not even care. Probably similar to smokers who should know smoking is not good for a person but they smoke any way.
The tour guide sounds like the same people who are fundamental religious types who use scare tactics to get followers to follow.
Gluten is tolerated by many, but for those of us who react poorly, we need to know that and avoid it.
I am one who suffered headaches, migraines, facial eruptions, hyperactiveness, and depression from ingesting gluten. I don't have those problems since I gave up gluten. I would have to be a sadist to continue ingesting gluten now that I KNOW it does that to ME.
Any way...I love your reporting in about your day and hope it enlightens many folks.
You really GET IT!:)

Mike Eberhart said...

Erin, those Glutino Pretzels won't last me long either I suspect. I love them. The $4.99 was $1.60 off the normal price of $6.59, which is why I grabbed a couple bags. Seems that the $4.99 would make a semi-reasonable regular price. Perhaps with time and competition.

The tour guide wasn't necessarily "uneducated" by any means - she did know the facts about gluten and CD for the most part, but that wasn't enough for her; for whatever reasons she was compelled to embellish the facts of the immunological condition with her own opinions and theories which were skewed and certainly pseudo-science at best. Had she stuck to accepted fact and norms, and left out the conspiracy theories, I would have been fine with her (even some of the label-reading inconsistency I would have tolerated better).

Lynn, I realize you are one of those that has achieved wonderful results when going gluten-free, even though you were not specifically diagnosed "Celiac" or such. There is certainly a segment of the population whose life will improve by avoiding gluten. But, you and I both know it is not 1/3 of the population that has the issue. And, neither of us would encourage others to join the GF community just out of fear.

When you've met Celiacs that don't know if eggs and milk contain gluten, that just amazes me and further makes me wonder who "educated" them, and what they are being told. They may actually care, and have just been utterly misinformed along the way.

I think experiences like this that we all seem to have encountered, emphasize the need for absolute consistency in information. But, personal opinion and competing theories, are inevitably going to enter the picture. When I first went GF, I was absolutely frustrated by how I could not get a clear picture of even what grains were "OK" when I perused the web, since so many sites had conflicting information about even something so basic (and, thanks to the semi-permanence of the web, that same conflicting information is still everywhere). So, expect an uphill battle in this quest for accurate and consistent CD/GF information for quite some time.

ElwoodCity said...

One of the main problems with pseudoscience is that real science that is thrown in gets discounted. A.M. Knivsberg at the University of Oslo, Norway, has some good papers on the connection between Gluten and autism (and DSI, though he does not mention this explicitly) - Not that this "guide" has any idea who Knivsberg is or what he has demonstrated.

Too bad this went so wrong. It was a great idea that I would have loved if someone had done well for me when I first got started.

Thanks for the info on oats. The strain of oats makes a huge difference, but I hadn't seen it quantified before.

Happy Homemaker said...

Wow! I'm not sure gluten is the world's evil. I haven't been diagnosed with celiacs, but after conventional medical care (RA? or Lupus? they still haven't decided plus other problems I'd been having for years) and no relief in sight -- a doctor who believes there is more to treating the body than medication told me to give up gluten because a lot of the problems I've had could be related to an intolerance. Within three days the swelling and pain (so bad that I could barely walk) had gone down...and within about 4 to 6 weeks all the pain was gone. Of course, I didn't believe it and tried gluten again...within 2 days the ache began and it worsened. As if that weren't enough my blood sugars have stablized.

Geez, didn't mean to write a book. I guess all I wanted to say is that while 1/3 seems ridiculously high to me, too -- I am one of those who never knew gluten was a problem until I eliminated it.

I thank you for sharing your experiences with us -- because I know I sure get some weird questions and I'm glad I'm not the only one to hear odd things.

Mike Eberhart said...

Happy Homemaker,
Yes, there certainly are others with similiar experience to yours. I do know quite a few people that are GF without a doctor ever diagnosing as such, and they feel much better. A few frequent this site too.

I personally think that detecting gluten-intolerance in many persons goes well beyond the accepted normal detection methods like duodenal biopsies and such. Just as you've stated, by going gluten-free and testing the back-and-forth between gluten-use and not, you sure have found a compelling correlation that obviates your gluten-intolerance. It'd be interesting to know if you had any of the known genetic markers for CD. If not, then I have to wonder how many more genes remain undiscovered that signal gluten intolerance prospects.

Thanks for the posting. And, for the sake of everyone in the population that can safely eat wheat and gluten, I will remain hopeful that there is no where near a third of the population that suffers from gluten/wheat intolerance. If for no other reason, such a surge in gluten-free people would make all our foods and ingredients end up in really tight supply :)

Michelle said...

Well, coincidence that you had such an utterly confusing group leader at a tour! I just finished being at the Health and Wellness show here, and our Celiac booth shared space with a display of Wheat-free cookies. When asked why we had that there, the owner of the shop that we were representing said that they are "almost gluten-free". Wow. I guess color me, "almost pregnant" then!

Nice to meet you Mike!

AJ Ponder said...

the reason many experts say one in three - is that gluten antibodies are found in the bloodstream of approx one in three people.
The current research on ataxia indicates these antibodies are all you need for ataxia - not full blown coeliac. (ataxia is a neurological issue- look up ataxia and coeliac eg http://brain.oxfordjournals.org/content/124/5/1013.abstract but there's plenty more)

As for a conspiracy. That's ridiculous, but surely you can see it as frustration with the system for being so slow on catching up with the science, especially as wheat is still constantly heralded as a wonder food.

cheers -- and your food looks wonderful!