Getting chewed out by fellow celiacs

I’ve known for nearly six years that I have celiac disease, but I have long avoided my local celiac support group.  I signed up a few months ago for their Yahoo group e-mail loop, and I’m having mixed feelings about it.  I guess it’s similar to why I don’t usually participate in homeschool groups — it gets political, with lots of people jostling for their own opinions to be *THE* opinion of the group, some with really forceful opinions, even trying to induce guilt…  Ugh.

I chimed into a discussion, totally clueless about where it would lead.  I’m not as upset about it now as I was a couple of hours ago… I think I’ve received nine personal (off-group) e-mails, and seven of them have been supportive, and some have even given me thanks for standing up to what are essentially the group bullies.  But, still, it has hurt to be chewed out by fellow celiacs when I feel like I go way over the top to provide a safe diet for my kids (and myself, and my hubby….).

You may not care at ALL about this, but I’m gonna post the discussion here.

It started by a woman just asking about gluten-free hot dogs.  Several people had suggested some high-end, hard-to-find suggestions, so to try to put a little money-saving into our efforts, but still be gluten-free, I offered this:

I also want to alert everyone to the new Oscar Meyer/Kraft Natural, smoked, uncured beef franks that have no nitrate or nitrites added, available at Fry’s (and maybe other grocery stores, but Fry’s is where I found them). They are the same price as other Oscar Meyer hot dogs, and have 6 bun-length hotdogs in a 12 oz package.

I have had great success calling Kraft about gluten and other dietary/allergen concerns; I’ve always found them to be extremely helpful. I did call them again today to double-check on the “flavorings” that are listed in the ingredients. All of the ingredients, by the way, are: beef, water, sea salt, potassium lactate (from corn), epaporated cane juice, celery powder, flavor, lactic acid starter culture. Anyways, while they wouldn’t say exactly where the “flavor” was derived, they did say that it’s not derived from any of the “big” allergens, including wheat.

Additionally, Kraft, as an entire company, lists all gluten sources, not just wheat. They will disclose if an ingredient — even in trace amounts — is from wheat, rye, barley, oats, triticale, spelt, farina, mir, or kamut. (I’ve never even heard of mir; I’ll have to look that up!) Also, though it isn’t relevant to these hot dogs, ALL of Kraft’s “modified food starch” sources are from corn, potato, or tapioca.

I hope that helps.

I know that, for our family, I have been *THRILLED* to buy these from a regular supermarket. Reasonably priced, readily available, safe for celiacs, all-natural, no nitrites/nitrates, great taste… I’ve bought numerous packages. (I do wish they were lower in fat — 14g per hot dog. But, I’ll take what I can get.)

~Karen

This was a response I received:

Karen and all,
Don’t be too fooled by Kraft. I got ill after consuming one of their salad dressings. When I contacted Kraft I had to be persistant but polite to get clearer answers.

For example, she pointed out that none of their products are produced on dedicated lines and in the future their labels will state that cross contamination is posssible on all of their products.

She also stated that they will disclose the 8 major food allergens but admitted they do not have to tell us if barley or rye is hidden in anything.

Quoting from your e-mail “Anyways, while they wouldn’t say exactly where the “flavor” was derived, they did say that it’s not derived from any of the “big” allergens, including wheat.”?? Yes, a nice way of not saying much. The 8 big allergens are milk, eggs, fish, shellfish, tree nuts, peanuts, wheat and soybeans. As you can see that doesn’t help us too much if we are trying to find out about hidden rye and oats (for some) and barley. They are following the law but morally I think they should give full disclosure.

Just be careful.
Take care,
Anne

I think what bothered me about that was telling me not to be fooled.  Umm…  OK. 

My response:  (By the way, this particular loop doesn’t allow for bolded text, which is why I ended up capitalizing a number of words.)

Anne ~

Yes, I realize that anything that is not 100% made from scratch, grown from my own garden, runs *some* risk. My intentions (as every celiac’s should be) is to do the absolute best to be 100% gluten-free, and when in doubt, do everything I can to absolutely minimize the risk. There are simply going to be times — MANY times, MOST times — when I’m at the mercy of people who simply don’t know as much about celiac disease as I do, from well-meaning friends to large food companies.

I’m not “fooled” by Kraft. I know, like 99% of other food producers, they do not have dedicated food lines, and there is going to be *some* risk of cross-contamination, as with pretty much every other food item out there. Heck, many GLUTEN-FREE producers don’t have dedicated lines!!

And, yes, legally, Kraft (and EVERY OTHER COMPANY) doesn’t have to disclose barley. But, if the c.s. rep is to believed, Kraft CHOOSES to disclose it, and rye, and kamut, oats, etc. I have no reason to believe that the lady I spoke with yesterday is lying. And, for YEARS, I have found Kraft to be one of the few large food companies who bends over backwards to at least TRY to accomodate food intolerances.

Is there *SOME* risk? Yes. There’s ALWAYS some risk.

But, as celiacs, can we choose to give our business to companies who at least make a concerted effort to minimize our risk? I don’t know about you, but I say, “Yes.” I will choose to patronize a company who is a) aware of the risks to celiacs and b) does their best to minimize those risks.

Otherwise, you’re stuck eating only Lundberg Farms rice, Tinkyada pasta, and fruit for the rest of your life.

I will NEVER eat any food that I know contains gluten, but there are times when — as the mother of nearly five children in a family who has FOUR members eating gluten-free — I have to make some choices that might, to some, appear slightly risky, like eating Kraft Natural hot dogs.

~Karen

I got this response, which sounds fairly reasonable, but I take it with a grain of salt because the guy owns a health foods store, which offers its own g.f. stuff, so I think his response is self-serving.  When anyone has a question about food items, he pretty much just says, “Buy the foods I have for sale.”:

Karen,
It is not just the use or non-use of barley or its disclosure. It is the cross-contamination of the machinery that the product is made on. The only SAFE gluten free products other than the ones that you make are the products made in a dedicated gluten free facility. Yes, I know these products costs more, but you have no choice. I have said this before in emails and it looks like it bears repeating, CD will still be active if you eat foods prepared in non-dedicated facilities. It is your choice, but be prepared for the consequences if you choose to eat commerically prepared foods.

James,Owner
Tri-Valley Health Foods

Still, though, he was reasonable compared to this lady, who changed the title of the thread to “FORGET KRAFT!!”

Thank you, James!!! I second everything you said. WHY is anybody going
anywhere or using products that are not strictly gluten-free? The big
manufacturers (e.g. KRAFT) are catering to mainstream America; they are NOT interested
in accommodating those with food allergies. There is no money in that. Big
business is ALL ABOUT THE MONEY!! The same with the Chain restaurants.
STOP going to the chain restaurants! Most of them don’t know what gluten is
and/or don’t care. It doesn’t pay for them to care.
There are dedicated facilities, such as Gluten-Free Creations, in Phoenix,
AZ that are Certified Gluten-Free and therefore, TOTALLY dedicated to meeting
our needs. If we give them our business, they will grow and flourish and
continue to offer us great products and increase their product line.

There are also restaurants with Gluten-Free menus that we need to patronize
and stop trying to reinvent the wheel or bang our head against a wall that
doesn’t care. The BIG CHAINS only care about mainstream America.

I always appreciate it when others on this listserve inform us of
independently owned restaurants (e.g. Kona Grill) that will cater to our allergies and
may even have a Gluten-Free menu for us. I have created a list of such
restaurants if anyone is interested.

If we don’t patronize the restaurants and bakeries that cater to the
gluten-free folks, they will not survive and go away. It would be an awful shame
and so regretful for them to disappear because we don’t patronize those that
choose to serve us so well.

Please give your business to those who are dedicated to helping us to eat
well.

Sincerely,
Susan

What particularly got to me was the suggestion that people like me make dedicated gluten-free companies go out of business.  Well… golly.  I think what may make them go out of business is the excessive cost!  I responded, to James’ post:

I thought you might chime in, James.
I most certainly have the health of my family to consider. But, also, I’m already paying about $175/week in groceries, eating as much from scratch as possible, baking and cooking virtually everything on my own — including making four loaves of GFCF wholegrain bread per week, and my own rice milk — eating as much organic as possible, plus feeding my seriously carnivorous husband.

I can’t afford to buy everything from dedicated facilities. I just can’t.

Plus, some items, like Enjoy Life’s foods, just aren’t that good! It’s hard for me to justify paying $5.00+ for a small bag of bad, but safe, granola, when I can pay (at most, with a coupon) $3.50 for a big box of g.f. Rice Chex that surely runs a risk of cross-contamination.

My own symptoms are immediate. But my 6yo son’s sensitivities eclipse mine. And, he is absolutely healthy, showing no signs of CD, in spite of me feeding him foods like Kraft’s hot dogs or chips like plain Doritos (which possibly also run a risk of gluten and dairy cross-contamination). He seriously came close to death at age 13 months due to celiac symptoms, and 5.5 years later is a thriving boy (with totally healthy poop, among other things) who happens to have some serious food intolerances and allergies. Not that I use my own dear child’s health as a barometer for risky foods, but if I was feeding him something that wasn’t right, I’d know it IMMEDIATELY.

I know not everyone will agree, but at some point, especially if I don’t want to drive my family into bankruptcy, I have to be reasonable about our diet. I can’t pay $7 a pack for Shelton’s hot dogs, and I WON’T buy Enjoy Life’s granola (though I do get Perky-O’s and Nutty Rice). I can’t pay $8 for a loaf of bread from Gluten Free Creations, though I applaud their efforts. I can’t pay $10 for a mini-cherry pie from Whole Foods’ dedicated gluten-free facility.

I’m just trying to strike a balance between my family’s finances, health, my own time — I already shop regularly at FIVE grocery stores, trying to accomodate everyone’s diet, PLUS, I spend a LOT LOT LOT of time in the kitchen.

I hope that makes sense.

I’m not angry… but I do think that folks who are single, simply worrying about their own diet, and not having to feed six people, are sometimes rather unreasonable.

I am a stay at home, homeschooling mom, and by the grace of God, my husband has a fantastic job. If you live in a Shea Home, chances are, he designed it. However, we are still on a limited income, and I simply can’t buy all my food from a specialty/healthfood store… So, I get my white rice flour (and potato starch, and tapioca starch, and sorghum and millet flour) from the Asian grocery, and make other slightly “risky” purchases.

~Karen
11/02
(plus a husband on a g.f. diet to eliminate alopecia areata, plus a 6yo celiac who also has a severe dairy allergy and is anaphylaxic to peanuts, plus a 2yo who is highly suspected celiac and allergic to dairy, plus a 9yo who is also on a GFCF diet due to a learning/life disorder that is on the autism spectrum)

And… that’s where it stands now.  I’ve gotten six private responses in support of what I wrote above, as well as one — very kind, very reasonable — “I can see both sides” response, posted publically from a lady who’s at the heart of the local g.f. movement, and has been g.f. since 1996.

Maybe it’s not as big of a deal as it feels right now, and I must say that those six private responses have left me feeling a lot less like I’m some gluten-poison-monger.  But…  I still feel rather slimed.
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About Karen Joy

I'm a partially-homeschooling mother of six -- 3 boys ages 19, 17 and 15 years old, and three girls: 11, 8, and 3. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I very casually lead a very large group of homeschooling families in the Phoenix area. I have a dear hubby who designs homes for a local home builder and who is the worship pastor of our church. I live in the desert, which I used to hate, but now appreciate.

Posted on July 10, 2008, in Allergies, Celiac Disease, Cooking/Baking/Food/Recipes, Digestive Woes, Medical Stuff. Bookmark the permalink. 11 Comments.

  1. Wow! Sounds like some of these people need to think more before they speak! I thought the comment James left was rather condescending and ridiculous – “I know these products costs more, but you have no choice.” Just because he wants you to shop at his store you have no choice??? Crazy! Based on what you’ve shared you DO have a choice – he just doesn’t like the choices you’re making.

    And Susan’s comment is just silly. All businesses are about making money – that’s the point of a business. If those companies that she’s referring to were only it because of being “TOTALLY dedicated to meeting our needs” wouldn’t they be charging less? Or maybe even doing it as a non-profit charity? But they’re not – they’re trying to make money just like Kraft or any other company out there. In fact, based on the prices you’ve shared for some of that stuff it sounds to me like they know you have to buy the stuff that way so they jack up the prices because what else are you going to do?

    Karen, I think you’re response to them was great. You made very good points and pointed out the flaws in their argument very well. Don’t let them bully you or make them feel bad for the way you handle your shopping and cooking. 🙂

  2. Oops! I meant to say make YOU feel bad – not THEM feel bad! 😉

  3. Oh, good grief! I don’t know what some of these people are thinking — honestly. I don’t understand why these folks would participate in a support group (a SUPPORT group for crying out loud) when they are so intent on squandering so much of their efforts on the doling out of condescension and pretentious drivel.

    Tell them to go write their own blog, Karen. 😀 Then they can sit and read it all by themselves and bask in their own self-importance to their hearts’ content.

    I think you hit the nail on the head when you said, “…but I do think that folks who are single, simply worrying about their own diet, and not having to feed six people, are sometimes rather unreasonable…”

    Your response was perfect! 😉

  4. Wow! Sounds like some of these people need to think more before they speak!

    The problem is…they have thought and that’s still what flies off the keyboard.

    I’m on a Weight Watchers list and some poor guy said that he had popcorn and beer for dinner (can you say “FLEX”?)

    Oh…my…goodness. One woman, after going way overboard finally got to the real reason…”my dad was an alcoholic…”

    Bottom line. We do what works best for us…let the rest rant and rave.

  5. Isn’t it funny how terrible narrow minded people can make us feel? I am feeding 7 people daily and already spending more than we can afford on groceries. If I were to buy everything completely dedicated, we would be homeless. I don’t yet spend nearly the time you do in the kitchen baking and the like because I have just in the last couple months been able to transition back to being a SAHM and I haven’t yet learned all the tricks of GF baking (I am a self proclaimed master at regular baking.)

    IMO, you handled this situation very well. In no way did you sound rude or condescending. You are constantly contacting companies regarding their ingredients and SHARING that information with the rest of us. I know most of the GF community appreciates you and the information you have… and frankly, if you share something that I don’t want to use, I can NOT USE IT. Imagine that. But there are lots of others out there who might want to know what you have discovered.

    I am glad you posted this here, because I am still buying Bistro Natural hot dogs at Costco and they are pricey. I will be on the lookout for Kraft Naturals now!

    Don’t let silly peeps get you down. We like your information around here, let them sit in their self-centered world and wallow.

  6. I’m so sorry that a place you went to for support and advice is doing just the opposite. We all live in the real world and have to balance cost with our health when we have food intolerances/ allergies/ issues.

  7. I discern that your voice of experience was helpful to the people who use the group for support rather than for leverage. It may be that you have to leave it at “my experience differs” without having convinced the zealots to change their tune. Hoping for more than that is prideful.

  8. I thought your answer was great. We don’t live a gluten-free lifestyle but we have several friends who do. I often pass along info from here that you have mentioned and they are always glad to have those suggestions.
    I think it sounds like you are doing a great job.

  9. Karen,
    I’ve been enjoying your blog for several months now and it is just the right time to jump in here and post. My son is almost 5 and Celiac. We’re a gluten-free house and life is just easier that way!

    Thanks for writing this post. Forums and “support” groups can easily become a “my way or the highway” type of deal. I have been a part of a couple in the past and frankly don’t enjoy them because there is usually at least one person that dominates every post or is the know it all.

    There are a lot of people who will read this post of yours and feel comforted or affirmed by the decisions they make in their everyday penny-pinching lives (like my own). I allow myself about 30-40 dollars a month in the health food store to buy some gluten-free snacks for my son (which amounts to about 4 or 5 things!). Beyond that it is baking, baking, and more baking. I rejoiced to see Rice Checks labeled gluten free. I regularly email Pepperidge Farms and beg them to make a GF Goldfish cracker. If I can buy it in the regular store it makes my heart sing. Not only can I save money that way, it keeps me feeling sane and semi-normal. I love to point out to my son who sometimes shops with me that there is something new and yummy that he can have in the grocery store. That is my life and glad to know (as I suspected) that others feel the same way.
    Debbie

  10. You have just confirmed what I’ve been thinking for awhile – if someone suggests a yahoo group for our local support group, I’m going to totally veto that idea. I’ve heard about other local groups that have a yahoo group that have the same sorts of problems. In my own group, we’ve got people who were diagnosed 30 years ago, and are so stubborn and stuck in their ways, and refuse to actually learn about CD other than what their doctor told them in the 70s. They are so freakin’ irritating!!! Rant over.

    Those people on the board. Pshaw! There are some “GF” labeled products that cannot be certified as gf because they are way over the limit. (I can’t name names, because I don’t know them. But I know that this is a fact.) Kraft probably has lower levels in the majority of their products that are gf.

    Anyways, I think you handled yourself nicely, but it’s obvious that some people there have an agenda, and apparently you and Kraft are not on it.

    We like Oscar Mayer hot dogs, and we love Kraft’s labeling policy. Those other people should get over themselves.

  11. Great job! I’m with you–I very much shy away from groups like Celiac support and homeschool groups for the same reasons. Keep on with the hard work, and most of all–PRAYING for God’s guidance as you feed your family. (In all your ways acknowledge Him. . .)I have found that to be a greater support than any group of people could ever offer!

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