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Educating the General Public about food INTOLERANCE

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My dd's body cannot tolerate highly processed foods that have additives and preservatives. She is on the Feingold diet (you can google it if you're not sure what that is) and eats only whole food and foods that are all-natural if minimally processed (like crackers).

She is 9 years old and I find it really difficult to help others understand that her diet doesn't contain fast food, rice crispy treats, and confetti ice cream. She is a chowpup and enjoys food all all types and cuisines, but she's been eating it all of her life, both from choice and necessity. When she was breastfeeding, she had the same problems, and I had to go through my own elimination diet when she was just brand new to this world.

However, an intolerance isn't an allergy. It won't KILL her, but it makes her life miserable (headaches, bowel problems, horrible eczema). People seem to understand, for example, gluten or lactose intolerance and respect it. I don't see that same kind of response when I say, "She can't eat processed chicken nuggets and hot dogs. No, salad is not the answer unless the dressing is all-natural. Yes, she eats ice cream... if it's ALL NATURAL. No, the birthday cake with red frosting is NOT okay."

It's like a child who doesn't eat crap food (whether that is preference or need) is some sort of weirdo and most people I encounter don't respond well to it. She is going on a 2-day field trip soon and when I said she couldn't eat the processed food offered by the food court, they said it would be impossible. She would have to eat it. So, they are able to accommodate the kid with lactose intolerance, and the kid with gluten intolerance, and the vegetarian kid, and the child who keeps kosher and the one who eats only halal, and of course all of those with allergies... but you can't accommodate my kid.

So because her restriction is to eat only GOOD food, it's not something they can deal with. How can I explain that her restrictions are just as important as the kid who will be in the bathroom for 2 hours if he eats dairy? How do we educate the public that these are real issues, too... it's not a kid just being picky? (or, I guess, it would be the *reverse* of being picky because she eats everything from mussels to duck tongue and every fruit and vegetable in between, but can't/won't eat processed chicken nuggets.)

  1. Honestly, I think that the way you are wording it "only GOOD food" is unintentionally coming off as snobby, which might make people defensive and less likely to help/understand. I'm not sure what your doctor has said about all of this, but it seems to me like she IS allergic/intolerant to specific things, you just haven't narrowed down exactly what those things are, other than that they aren't present in most whole/homemade foods. I would probably try to word it as such . . . something like "DD has many allergies to preservatives and other food additives, and has a terrible reaction when she eats them. We are still sorting out which she is allergic to, but for now, unprocessed foods seem to be the safest option"

    'natural' is a very subjective and vague term, so it would probably help if you gave people more concrete, specific things for her to avoid (e.g., she can't eat anything with MSG, XYZ preservatives, etc.).

    2 Replies
    1. re: LabLady

      "DD has many allergies to preservatives and other food additives, and has a terrible reaction when she eats them. We are still sorting out which she is allergic to, but for now, unprocessed foods seem to be the safest option"
      _______
      I think that's a good strategy. No offense to the OP, but saying that a person is intolerant of all unnatural ingredients and additives doesn't quite pass the smell test. A person may very well be intolerant of a broad array of preservatives, food colorings, texture modifiers or other things found in more processed foods. But additives don't separate out into 'natural' and 'unnatural' quite the way the OP seems to think. To say that a person can't tolerate any amount of, say, citric acid when it's used as a preservative doesn't really make sense if that person can eat an orange with no ill effects.

      The Feingold diet is sort of a medically un-favored treatment of ADHD. I can see how it might also serve as a decent conservative approach to one's diet for a person who shows multiple intolerances to a broad array of processed foods. But it's pretty implausible that a person is intolerant of every single thing the Feingold diet eliminates - literally thousands of substances that have little or no chemical similarity to each other. Rather than saying that a person is intolerant of ALL of these things, I think it's better to say that a person has a complicated and tangled set of intolerances to some food additives, and adhering to the Feingold diet is a way of playing it safe with her health. I think people would be more understanding of that.

      1. re: LabLady

        I think the correct term is "Whole Food". This is a diet people should follow anyhow as eating whole foods is the healthiest diet available. I guess you could say using the term "good food" is subjective and could be insulting to someone who lives on a diet of processed food..but really..whole food is best.

      2. and saying "all-natural" doesn't cut it, either -- stinging nettles and poison ivy are all-natural, but you don't find too many folks wanting to rub them all over their body.

        *specify* what she can and cannot eat, and *specify* why she cannot -- if you have to go into graphic detail, then do -- but just saying "my kid only eats GOOD food" isn't helpful to anyone. (there are those who would swear on their mother's grave that Twinkies are GOOD)

        A note from her pediatrician would be a very good backup, by the way.

        5 Replies
        1. re: sunshine842

          True, but stinging nettles are eaten cooked.

          1. re: iheartcooking

            I know that...my point was that "all-natural" doesn't necessarily mean benign and healthy.

            1. re: sunshine842

              Nobody said that all-natural is always benign and healthy. Beef is all-natural, cream is all-natural, butter is all-natural... but if you eat them every day, they'll eventually probably kill you. But if you are going to eat a processed food and the ingredients are "potatoes, vegetable oil, salt", that is going to be a healthier choice than Doritos. Not just for my dd, but for everyone. In fact, a few of the items on my dd's list are naturally occurring items. When I say "all-natural", that means I still look to make sure the natural offending ingredients are not on the list either.

              1. re: velochic

                "all-natural" doesn't mean anything. Period.

                There are all-natural things that will kill you on the spot.

                The definition of "all-natural" changes depending on the time, the day, and which marketing yo-yo is writing the definition at this particular moment in time.

                Don't use "all-natural" when trying to describe your dd's diet -- it doesn't mean anything and only confuses everyone.

                1. re: velochic

                  <<Beef is all-natural, cream is all-natural, butter is all-natural... but if you eat them every day, they'll eventually probably kill you. >>

                  Science would disagree with you. There's nothing wrong with eating any of those 3 every day, as part of a complete diet.

                  It's statements like this one that leads to resentment and backlash from folks. You assume those things are bad for you, but in moderation, they're not. When you make incorrect statements, you're not likely to get understanding from folks when you have a legitimate issue.

          2. I hope someday they can figure out what the real issue is - like what chemicals or ingredients are the culprits. Good Luck!

            1. I do have a note from her pediatrician. It doesn't matter. It's not a life threatening issue, and is most certainly NOT an allergy. Calling it an allergy is disrespectful to those (like myself) that have true food allergies. This is the list that the doctor gave me of ingredients to avoid:

              Citrus Red 2
              FD&C Blue #1
              FD&C Green #3
              FD&C Yellow #6
              FD&C Red Dye #3
              FD&C Yellow #5
              BHA (Butylated hydroxyanisole)
              BHT (butylated hydroxytoluene)
              HFCS (High Fructose Corn Syrup)
              Calcium Disodium EDTA
              Calcium propionate
              Sodium Benzoate
              Benzoic Acid
              Sodium Nitrate
              Sodium Nitrite
              Sulfites
              TBHQ (tert-Butylhydroquinone)
              Artificial flavoring, including “vanillin”
              Diacetyl
              Disodium Guanylate
              Hydrolyzed Vegetable Protein (HVP)
              Monosodium Glutamate (MSG)
              Nonyl Alcohol
              Polysorbate 80
              Potassium Bromate
              Potassium Nitrate
              Acesulfame-K
              Aspartame
              Saccharin
              Sucralose
              Sorbitol

              The thing is, that if something has, say citric acid in it, chances are, it will have some OTHER ingredient that she needs to avoid.

              I do think that processed food is junk food. That's kind of the definition of it. I have never "presented" it that way. I always use the term, "processed food". Saying only that she cannot eat "processed food" *is* a generalization, but I find it necessary because teachers and friends are not going to pay attention to the actual details, let alone carry around the above list, like I do, to check against just for my dd.

              Ultimately, when I cook from home, I use only whole ingredients. If we eat something processed, the ingredient list is a list of whole foods. When I say all-natural, I'm assuming that people have the common sense to know that I'm not advocating adding poison ivy to her food.

              Some of the replies of this thread is exactly what I'm talking about. Citric acid and oranges may be similar, but one is found naturally, and another is cultured in a lab. So, according to that poster, I must just not know my child and her tolerances if she can eat oranges and not eat citric acid. THAT'S the attitude I'm talking about. That others judge what is OK for my dd to eat because her problem does not fit with THEIR logic. It doesn't fit tidily into a box like lactose intolerance. (Citric acid is not something we avoid, so that point is moot, but I'm just using it as an example.)

              15 Replies
              1. re: velochic

                You're expecting to "educate" people on something that defies definition. Labeling other people's food choices as "crap food" demonstrates a food "intolerance" of another kind on your part.

                1. re: ferret

                  I totally agree. Since having dd and learning about the processed food industry, I have developed a bad attitude about it. I am intolerant of what they are adding to our food and the marketing strategies to keep people from asking questions. I don't think it's healthy. I used to eat it often and do notice a personal difference since not eating it for 10 years. I absolutely, 100% agree that I have an intolerance toward the food industry taking the cheap route instead of the healthy route when it comes to the food that is on our grocery shelves. I think that it would be good, ala Michael Pollan, for all to learn that, yeah, all of those chemicals combine to provide sub-par nutrition, or, simply put, "crap food". And I would have expected that a place like this would understand that when you start with good ingredients, you get good results. You can shoot the messenger, but the message remains the same.

                  But I'm not out to change the world (or North Americans). I just want to figure out a good way to talk to people about the fact that for my dd, it's not just "not good for you", it's debilitating for her. Hand out the paperwork that the doctor gave us? That seems like overkill.

                  1. re: velochic

                    It's not overkill handing over the paperwork from the doctor. I have celiac disease and now lactose intolerance as well. :-( So, when I travel I must take restaurant cards with me detailing the fact that I cannot by ANY circumstances come into contact with gluten. EVER. My cards also specify information on cooking procedures (i.e. scrubbing the grill). They are especially handy when eating on in other countries. Out of necessity I must make extremely clear to the server and chef the severity of my diet restrictions. Same with airlines and so on. It is a huge pain (I detest having the focus on celiac when eating out so always call ahead) but as I have no choice it must be done. So, I advocate the use of a card with your daughter, too. It certainly can't hurt!

                  2. re: ferret

                    How does it defy definition to eat a diet that is free from preservative and chemicals?

                    1. re: BlueMagic

                      Define 'chemicals'

                      Which of the following substances would be considered chemicals?
                      Sodium chloride
                      Sodium bicarbonate
                      Potassium bicarbonate
                      Acetic acid
                      Lactic acid
                      Citric acid
                      Chlorogenic acid
                      Monosodium glutaminate
                      Dihydrogen monoxide
                      sucrose
                      fructose

                      What exactly makes a 'chemical' added to food different from an 'ingredient?'
                      Not necessarily undefinable, but nowhere near as easy as you seem to think.

                  3. re: velochic

                    Maybe you don't understand, Oranges contain citric acid. Citric acid is citric acid, one being "cultured in a lab" and one being found in an orange does not change the chemical composition of the citric acid (C6H8O7). I know citric acid isn't something that you're trying to avoid, but your "understanding" of things seems to be off. You seem to come off as all knowing and act as if others don't understand what you do. I think if you presented it in the manner LabLady suggested, you'd have much more luck.

                    1. re: Rick

                      Of course I understand. I don't know how I come off as all knowing. My question is how to gently help others understand that even if it's uncommon, food intolerance is like a handicap. It shouldn't be brushed aside just because it's not the "usual" problem.

                      As for citric acid, the chemical composition may not be changed, but the procedure by which it is created in a laboratory is different than how it is created in nature. I'm sure you are aware of this, but there is a fermentation process for creating citric acid because it's used so abundantly. I guess that is what I was thinking of when I made the comment I did. Who knows, in the long run, how this eventually effects the molecule and if it's not the process of producing the citric acid that causes some sort of problem for how people metabolize it? Processed food is relatively new in our human history. Everyone has a lot more to learn about it... I, most of all. I don't think dd has a problem with citric acid, so I'm just continuing with that as an example, but it's a great example that we just don't know what effect the process of producing it in the lab may have on the final ingredient.

                      If people think that giving the list is the easiest thing to do, then I'll do that. I just thought it was overwhelming (it was for me, at first).

                      1. re: velochic

                        I agree with some of the other posters that, 1) your approach, and 2) your definition of a few issues could help things.

                        On your approach, I can understand the use lf "crap foods". I think a lot of people have used that jargon. But you're not likely to make much headway when you're implying that other folks let their kids eat "crap food". It just doesn't come off well.

                        On you definition, water that's a product of nature, or water created in a lab, is water. It's H2O. Ditto with citric acid. It is what it is. Saying "Who knows, in the long run, how this eventually effects the molecule and if it's not the process of producing the citric acid that causes some sort of problem for how people metabolize it? " is irrelevant, because that logic can be applied to anything. We don't make decisions on what may or may not be found in the future. We make decisions on what we know now. MSG is another interesting one - it's one of various forms of glutamic acid, an amino acid commonly found in nature. What does one do with that? If it's lab produced, it's not tolerable, but if naturally occurring, it's OK? That makes for tough logic.

                        As for processed foods, maybe that's something that you need to define a little more clearly, both for yourself and for others. Is cheese a processed food? Well, it's milk that put through a process. I know this doesn't apply to your DD, but what about wine? Beer? Ice cream is a processed food - all natural ingredients or not. It's milk put through a process, converting a set of ingredients from one form into another.

                      2. re: Rick

                        I am sure that the OP means citric acid as manufactured in a food laboratory...not citric acid that occurs naturally in citrus food..the two are completely different things.

                        1. re: BlueMagic

                          Are you sure the two citrus acids are not chemically the same rhing? I do not know for sure about citric acid, but I do know that nitrogen fertilizer is the same whether it is manufactured or come from livestock manure, both are nitrogen and the crops don't know the difference.

                          1. re: BlueMagic

                            No, they really are the same chemical. One is produced by one organism (a plant) while the other is the same chemical produced by another organism (a fungus). There are distinctions between the two that may be significant from an intolerance perspective - mainly, very low incidence possibility of extreme sensitivity to aspergillus, which as far as I can tell is actually less common than allergies or intolerance to actual citrus fruit.

                            Saying they're 'completely different' is both misleading and incorrect.

                            1. re: cowboyardee

                              Without sodium chloride (ie. salt) -- a preservative -- one could make the argument that mankind would never have survived this long.

                        2. re: velochic

                          I think carrying that list around on a laminated card and then showing it to the person preparing/serving the food ought to do the trick. All you really have to say is, "Eating anything containing these ingredients will make my daughter very sick. Can you guarantee that chicken nugget is totally free of all of these?"

                          In my experience, people don't really want or need to know all the details or symptoms. They just need to be told what's off limits. Your list is highly specific and will do the trick without the need for disputable terms like "good," "healthy," "junk," etc. Most people will be so intimidated by a list like yours they won't question you, but if you use terms on which people do not agree, they will. So be as specific as you can.

                          1. re: Isolda

                            >>I think carrying that list around on a laminated card and then showing it to the person preparing/serving the food ought to do the trick. << I highly doubt the food jockey's slinging out trays at food carts have the slightest clue what preservatives, colorings, etc. are in the foods they are dishing out. I don't know if they are required to produce ingredient lists. Perhaps. If you ask them if they can guarantee their nuggets are free of the offending ingredients, you are likely to leave the food court hungry every time.

                          2. re: velochic

                            "Some of the replies of this thread is exactly what I'm talking about. Citric acid and oranges may be similar, but one is found naturally, and another is cultured in a lab. So, according to that poster, I must just not know my child and her tolerances if she can eat oranges and not eat citric acid. THAT'S the attitude I'm talking about. That others judge what is OK for my dd to eat because her problem does not fit with THEIR logic."
                            _________
                            It's not an attitude. I understand that the processes by which some food additives are derived can also entail higher concentrations than are found in unprocessed foods, or changes to their chemical structure, or added impurities tagging along from the derivation process, or even just lack of mitigating substances also found in the unprocessed food of origin. But your language has been very imprecise and it seems you think of derived citric acid as wholly different from that which is normally found in unprocessed foods, just as it seems you think anything and everything that has been manipulated by industry is completely different from everything 'natural' whether or not it's actually the same substance. That's not how medicine works and it's not how chemistry works.

                            I'll put it much more bluntly than I did in my last post: your explanation of your DD's problems (which I have no doubt are very real, btw) comes off as dogmatic rather than based on medical science. It's not your DD's problems that are in question but your explanation and understanding of them.

                            If you want to educate people about food intolerance, start with yourself.

                            That said, I wish your DD well and hope that people respect her dietary needs. I think people will have an easier time understanding and respecting her needs if you drop the dogmatic explanation and stick with a medical one.

                          3. First, I think you need to step back and take a look at the way you're presenting it. As I read through your post, all I could think of was that you're coming off as all-knowing and that other people *can't* understand (and are stupid for not understanding). You may not realize that, but rather than trying to worry about educating others, you need to figure out how to educate your daughter.

                            People are not always willing or able to watch out for every food allergy, preference, or intolerance, and honestly, far too many people are willing to make them up these days for whatever godforsaken reason they have. I am not saying that you are doing this, obviously, just reasoning as to why they might be less interested/willing to help. Or, they just might not be able to. You're asking a lot of one or two teachers. Vegetarian, kosher, halal, all are relatively common...even GF is common these days. But the ingredients that you're removing are in...almost everything. Processed foods are everywhere, particularly in fast food courts. The other kids should be able to find something, but it sounds like your daughter won't. So, these teachers might already be realizing that, and also realizing that they don't have the time or ability to go through every food stand and ask about ingredients.

                            So, you need to either keep your child home (which I doubt you want to do), or, teach HER. She's nine, and probably quite capable of knowing (at least at the basic levels) what's good and bad. Find a list of the fast food chains in the court, and see what each offers. Can she get a salad and bring her own dressing kept in a small cooler that is refilled with ice as needed (hotels and restos)? Can she eat plain grilled chicken? Can she eat a plain hamburger? Can she eat...etc. Give her a list of what she CAN eat, not all the ingredients she can't. That's confusing even for most adults. It requires you to do the footwork, and will also help the teachers in the long run.

                            You're asking a lot. That's what I think is the problem here. There is no clear cut answer, like with vegetarians (can't eat meat), GF (can't eat gluten), etc. She has a wide range of foods that don't really relate in any tangible way (except for the processed, which...it would seem to many people that everything is processed).

                            11 Replies
                            1. re: milkyway4679

                              Keeping her home is an option.

                              Packing her food is another option.

                              How do you deal with the after-effects? Because she and her teachers are going to need to know if she goes...hopefully everything would be fine, but you *always* need to have a safety net.

                              1. re: sunshine842

                                Of course. I'm not saying that the teachers shouldn't keep an eye on her, but at nine, she should start learning what works, what doesn't, and when to recognize she needs an adult's help for the situation. Mom should notify the teachers, provide a short explanation (on paper) along with the crazy list of what not to eat, and then teach her daughter to look out for herself, but to go to the teachers with issues.

                                1. re: milkyway4679

                                  yep. we're on the same page...but no matter how wonderful the intentions of everyone -- eventually this kid's going to eat something that sets off her intolerance, even if by an honest mistake, including her own.

                                  Telling how to deal with it also reinforces the idea that this is a genuine issue...because now they know what the consequences will be.

                              2. re: milkyway4679

                                Milkyway is right on many counts. It appears that you're taking the burden off your daughter's back and laying (VERY heavily) on everybody that doesn't eat the way you do. Which is a natural maternal thing to do, but I would suggest that you're not doing your daughter any favors with what appears to be the absence of responsibility for her own life and choices, essentially.

                                I agree with those who say that your choice of words hints at food snobbery rather than worry about your daughter's health. Let people know what she CAN eat.

                                1. re: EWSflash

                                  Agreed. I have a friend with multiple food allergies, including dairy, eggs and peanuts. She is always quick with suggestions of what she could eat, and I even eat out at restaurants with her with minimal fuss.

                                2. re: milkyway4679

                                  I know I'm asking a lot. And I realize it's a problem. That's kind of why I was asking. I had no intention of coming across negatively and I should have guarded my words better. I apologize.

                                  1. re: velochic

                                    No worries, I think the best options are those immediately above... take this opportunity to let your daughter begin educating herself and becoming more autonomous about her eating habits, since this is something she will have to deal with for the rest of her life. Then, teach her how to cook! Her life will be a lot easier if she knows she won't have to stress about what to eat.

                                    1. re: velochic

                                      I think the problem is, at a food court, what can she eat? That would be helpful to the teachers, not what she can't have since it's so limiting. If there's nothing, the only solution is for you to pack, or to go along. It's possible to find what "no meat" or "no nuts" means, but "no processed foods" could mean no bottled water (which can have preservatives). What's in the milk? It's processed unless they're serving raw milk. What about honey? I don't think it's so much that you're asking a lot--I think they need solutions. I know I'd be at a loss if I were the teacher. Good luck with finding a solution--it's just the start so this is a good beginning.

                                      1. re: chowser

                                        I can empathize that as a mother this must be beyond tough and frustrating. However, I must agree that you are simply asking too much of people. As a teacher, I would be petrified to let your daughter eat ANYTHING that she did not bring from home. Not only do I not want her to experience any ill effects, but would I want to be held legally responsible? Obviously not. Buy some laminated cards with a list of ingredients that your daughter cannot eat as a safety precaution and teach her her the foods that she CAN eat. Then. do not put the burden on her teachers unless they have CLEAR instructions on what your daughter can eat at the food court, without them having to guess. If I were your daughter's teacher, I would have you put it in writing on her school trip form.

                                      2. re: velochic

                                        Don't apologize. You're trying to protect your child, and that tends to make anyone sound a bit negative. :)

                                        I understand your fear, I do. I suffer from a chronic autoimmune disease (Crohns, specifically), and can have some pretty nasty issues from food. If I eat the wrong thing, you might catch me moaning from the severe cramps, with no warning of when I might need a toilet. So, I understand far better than most know. Which is also why I am a big time advocate for children taking control of their illness.

                                        If you don't start teaching her now, she might never learn. I've seen "kids" in their late 20's whose parents just kept feeding them the right things (but never taught them how), and now they're lost. She's probably going to make mistakes (in fact, I will guarantee it...everyone does when they're testing out their eating wings), but thankfully, they won't do much more than make her feel not so nice for a bit.

                                        I think that you need to figure out what the food court will offer (call them if needed), and figure out what's in what. Going from there, figure out what your daughter can eat. On top of that, write it all down, explain it to her, and make copies. Provide the teachers with copies, as well as the caveat that you don't expect them to babysit her, but, if they could just be prepared in case she accidentally eats something that doesn't agree with her. Does she normally use things like Pepto or some sort of anti-diarrheal (sp?)? If not, maybe speak with her dr about one of those to help minimize any issues so she doesn't run into too much trouble on the trip.

                                        I'm probably being repetitive from my earlier post, however, I hope that you'll consider my advice :) I've got this down pretty well by now, and don't run into too many issues when traveling (mostly because I know doom will occur when I eat fast food, and just deal with it because well...I enjoy it sometimes!).

                                        Good luck to your daughter and you. Hopefully as she ages, her allergies will begin to phase out as well.

                                        1. re: milkyway4679

                                          This is great advice all around. Be proactive and do the legwork yourself, instead of relying on teachers to do the work since they won't have the same knowledge. It's one thing to say, "She can only have xxx, yyyy, and zzzz from whatever restaurant" takes the onus off the teacher who has so many other children to worry about.