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.)
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.
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.)
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.
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.”:
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.
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
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.
(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.