Category: Allergy Information

This started out to be a different post. Denise and I had gone to a public lecture at one of the big medical facilities in our area to hear an immunologist talk about food allergies. I don’t think either of us held out hope that we would be enlightened, but given our conversations after, I think we’d both hoped to learn something.

We didn’t.

The questions from the audience showed a hunger for knowledge, for answers. About half the audience seemed to be there because they have children with allergies. The other half seemed to be adults with unexplained chronic health issues or actual diagnosed adult-onset food allergies, looking for information and answers. We did not really get answers. There was an implied dismissal of patients who have anything less than full anaphylactic shock (and, again, that was not all that clearly defined other than “can lead to death.” If the actual definition is applied — any reaction involving more than one bodily system reacting — all of us in the food allergy and most in the food intolerance worlds have been in anaphylaxis way more often than we’d believed.). There was also very polite scoffing at anyone searching for answers who believes that food allergy or food intolerance might be the problem.

Denise and I have both encountered this in our fun exciting journeys through western medicine and the US health insurance and health care systems.

Here’s the rub: For some of us really unlucky people in the world, our bodies have decided that foods, some foods, are enemies worse than viruses. This food fight can take a variety of forms. Food allergy is an IgE-mediated allergic response to a food. Food intolerance can be a lack of digestibility (e.g. lactose intolerance) or something more vague than that. Celiac disease is an autoimmune disease. The only one of these things that has a clear clinical diagnosis protocol is celiac. In all of these cases, though, the prescription is the same: Avoid eating the things that make you sick. This is generally just good life advice, but when the fight in you takes days, weeks, (or a trip to the ER) to resolve, it’s a little more serious.

So without clear diagnostic protocols, and with a pretty basic (if really time-consuming, life-altering, and fucking annoying) treatment plan — avoid the food — how do you, a sick person, get actionable information about what to do to improve your own health? How many of you have asked your medical professional about certain tests, certain diagnoses, or certain studies that they hadn’t ever heard of? How many of you have relayed information about how you experience symptoms in your body, whether in relation to food or not, and had a doctor ignore that information because they don’t know what it means diagnostically? How many have been told that food has nothing to do with your issues, even if your issues are digestive? How many have waited months to see a specialist who spends 5 minutes listening, shrugs off everything you’ve told them, and then prescribes a drug without explaining anything about it?

I think this is common for those of us with adult-onset food issues — allergies, intolerances, and the like. I know that I read more than my primary care practitioner on the research about food allergies. She has admitted that. She has suggested tests and diagnoses and let me go off to research them and see if I think the descriptions of symptoms fit with my experience. At first I was not on board with this, but now? Who knows better what I feel in my body than me? I’m the only one living here! Besides, she has maybe hundreds of patients. I have only myself and my own symptoms to read up on.

When I research, however, how do I find valid information? Who do you trust, how do you vet your information, and how do you avoid bad data? How do you tune out the really bad advice?

I trust that most of the research being done by federal health agencies (NIH, CDC, FDA) is based on solid scientific methods, that they will be properly cited, and that the authors will be clearly identified. I trust research being done or promoted by FARE is the same. I trust that data provided by major hospital and research groups (Mayo, Dartmouth, Mass General, Kaiser) is also scientifically valid. But bear in mind — scientifically valid and useful are two different things. Like many other people with food allergies, I think I’ve learned as much if not more from other food allergy sufferers as I have from “proper” scientific research. I’m not a scientist, and neither are most of the other food allergy bloggers. Nor are most of us dieticians, doctors, pharmacists, or other medical professionals. But we live it, this food allergy life.

So this is how I try to weed out useful information from randomness. Writers I trust relate their own personal experiences of symptoms, suspected causes, trials and missteps in figuring things out, methods of “research” on themselves, any helpful or non-helpful information from medical professionals, tests, and outcomes or results. They do not try to generalize this to everyone. Most food allergy writers know how idiosyncratic allergy and intolerance presentation is, and they write with that in mind. Writers who generalize that their personal story must be everyone else’s, writers who purposely or knowingly relay “health information” that has been debunked or disproved, writers using anything that sounds like a “health information headline” in a major news outlet (i.e. alarmist and click-baiting), or anyone promoting a magic cure, I do not trust and generally drop from my reading list. Writers who do their research and cite it, I am more inclined to trust and keep reading. This includes anyone whose research is “I tried this and here’s what happened.” Sometimes, we learn best by doing.

Anyone who dismisses all alternative treatment methods outright, I don’t trust. It’s one thing to share studies that show efficacy or lack thereof of different alternative treatments. It’s also great when, again, people share their personal experiences and even their theories. Most of us who are in this boat are or have been desperate at one point or another, and if you try some supplement or massage therapy or anything else in hope, how can I blame you? I understand. Doesn’t mean I’ll follow you, but I’ve done my own experimenting.

The wealth of information available to us is a benefit and a pitfall, I think. Anyone who has had a long bout of ill health with no good answers from their doctors has probably tried the sugar water, and I don’t fault them for that. This is one of the reasons that the gluten-free trend doesn’t bother me that much. People don’t feel great and they are searching for answers. But too many “health” blogs and “health” companies out there promote magic cures that do nothing or, at worst, cause additional harm. I do not believe in magic cures.

You are the only person who has to live in your body and deal with whatever is wrong with it. If you can learn to pay attention to what it’s telling you, I think that is generally your best chance for achieving your own optimal health. This one I feel okay making a generalization on — what better primary source of information do you have than your own bodily experience? With the information you get from paying attention, you can evaluate health information and treatment options from the internet, from well-meaning friends and family, and from your health care professionals.

We don’t have a magic cure. If we did, honestly, I’m not sure I would trust it. I guess the closest thing we’ve come up with as “magic” is being able to make and eat good food that doesn’t want to kill us. That is why we write this blog. I hope at least one or two of our recipes has made you forget you’re being “deprived” of “normal” foods.

This is part one of a series I’ve been discussing with Denise talking about some of the many things we’ve learned via the “fun” of food allergy diagnosis and lifestyle. Some of what we’ve learned is about food and food production. Some is about psychology, some about culture, and there are probably some life lessons in there somewhere. These posts will come up irregularly, but given that a huge part of the challenge of living with food restrictions is not about actual recipes, we thought it was an important part of our blog mission to talk about “life, the universe, and everything” a bit, too.

One of the weird things about food allergy and food intolerance is that you all of a sudden become a student of our modern food system. It starts with reading labels, but it doesn’t end there. Read a label. Go on, pick up something close to you and read it. Wait, no, never mind, I’m mostly preaching to the choir here. You already know most of this.

On your average* labeled food in the US, your average* non-chemist citizen will be able to identify, if she’s lucky, maybe half* of the ingredients as actual foods. The information on fat content and calories is pretty clear, but actual ingredients are less so.

[*Editorial note: all references to anything like numbers are, for clarity’s sake, completely made up.]

There are entire labs devoted to figuring out how to create tastes and smells and textures that may or may not be based in nature. And these labs aren’t kitchens. To be honest, I think it’s kind of cool that we have this kind of science — that we can make something like a Twinkie exist and be shelf-stable for, well, let’s just assume that it would survive an eternity with all the “freshness” it was given upon creation. I like the idea that sometime, in our post-apocalyptic future, some bedraggled but strong survivor may discover a secret cache of a 7-11, with enough calories to power her through the next month or two, trying to preserve some vestige of the human race.

The point of bothering to share that (admittedly grim) future vision is to primarily give you my bias in this matter. I think science is cool. I think science in food is kind of cool, though I can’t speak to the health impacts of it. And therein lies one of my problems — for the most part, none of these scientists are speaking to, or even studying, the health impacts of their culinary science experiments. Science for the sake of science is one thing. Science for the sake of corporate profit with an unsure safety record, or science that uses the populace as a large pool of guinea pigs isn’t something that makes me sleep soundly at night.

In the US, regulation of food descriptors is next to meaningless. “Natural” doesn’t actually mean anything, and let’s be clear — human beings are “natural” so if we create it, it is also “natural.” And that’s as much as that word means in marketing. Also, as we the food allergic know, most of us are allergic to “natural” things. My first allergic food reaction (or the first one I clocked as such at the time) was to a hazelnut, right off the tree, at a hazelnut farm. You really can’t get much more natural than that.

“Organic”** and “gluten-free” are now defined terms by the USDA and the FDA, respectively. Not much else is.

[**USDA’s page on the National Organic Program is currently down due to the Federal shutdown. So you get wikipedia.]

As I’ve read more and more food labels, and as I’ve looked up all the ingredients I didn’t know, I’ve become more conservative about what I choose to eat. I don’t judge anyone else for making a different choice. We all need to be in charge of our own health — and, indeed, in figuring out what that is. These days, when comparing products, I will generally gravitate towards the product with the fewest number of ingredients — the fewer things I have to worry about, the less stress in my life. And the less I need to read. Given that companies make no efforts to let you know when they’ve changed a recipe, I have to remember that I need to read all labels, even for products I’ve been safely buying for the last few years. It gets tiresome, and so I find it easiest to mostly buy products without labels when I can. Ah, broccoli.

The other thing that I find to be a truth of the food allergy world is that we are pretty constantly learning from one another. With Denise’s corn allergy, I’ve learned so much about processing and how our foods can be contaminated with things that don’t need to be listed because they are part of “processing.” Or ingredients that can be derived from a variety of different source materials, but don’t need to be labeled (lecithin can be a derivative of egg, soy, or sunflower, though the latter two are usually labeled as such). With recalls, I’ve learned how often it is that things go wrong in the manufacturing process and how easy it is to be exposed to something you take all the care in the world to avoid.

This part of the food allergy life is the scary part, and at times, I know fear is a huge driving factor in decisions I make about travel, eating out, and socializing around food. Working through this is not a one-time thing but an ongoing process, and that’s part of why we’ll be writing some of these non-recipe posts. We’re hoping to talk about the role food plays in our lives, how that changes with food allergies, how that can affect families when your food traditions have to shift to accommodate one person’s health (or what happens when the tradition is given precedence over the person), being your own advocate (or not), being the “weird” one, the sheer time factor of needing to make your own stuff, the planning that goes into feeding yourself, and anything else that happens to come up as we write about the other things.

What about you? What would you like to see discussed? What has having food allergies — or being around someone who does — taught you? What do you still need to learn? We’re open to suggestions.

On Monday, April 29, 2013, I had some more scratch test allergy testing done because I was having symptoms similar to those I had before I realized that the milk allergy was bad and couldn’t be ignored any more (see my Denise page, which will have to be updated at some point for reasons that will become apparent), and again a year or so later, just before I tested positive for coconut, almond, egg, clams, and crab. So after hemming and hawing and hoping it would freaking go away for a few months (please don’t do what I did, I’m an idiot), I dragged myself into my allergist’s office for more testing.

I got a 2+ for lobster and 1+’s for wheat, corn, potato, chicken, celery and onion. For the 1+ results, the allergist says this result means I have approximately at 25% chance of having a true allergy for these reactions. I’ve been told to do a food avoidance for these and then do a challenge for each ingredient to determine which ones actually cause symptoms. So, here’s the thing. I know it’s at least one of them, and one of my 1+ results from the last round of testing, egg, causes me huge distress when eaten, totally belying its puny 1+ reaction. Here’s the other fricking thing. This brings me to a total of SIXTEEN foods and food derivatives that I have to avoid to do this challenge. Now just for fun, since corn is not a top 8 allergen and doesn’t have to be declared or labeled separately, go look at this list of possible corn derived ingredients. Then go look at this list of foods and products that you may not recognize as containing corn. I thought wheat was bad before I started looking at this stuff, but seriously, I think corn is the worst. And I’ll totally lose being able to eat most Asian food out at restaurants, which will be really, really annoying. And why can’t the FDA get it through its head that people would be best served by having all this stuff labeled?? But actually, I know why and it involves the moment of little pieces of green paper, to borrow a phrase from Douglas Adams.

I haven’t started the elimination process yet, because I’m thinking that while I’m at it, I should just freaking get tested for celiac as well and get it over with, thanks to Mary Kate’s sharing of Celiac Disease Symptoms from the Gluten Dude, and since I still I need to be eating wheat in order for the test to work. In addition, there’s a crapload of stuff I have to sort through and figure out and learn. But at this point, it’s looking like a lot of plain beef or pork, plain vegetables, and rice in my future for the avoidance part of the challenges. Please send good thoughts for the challenges that I was just having a bad day and my skin was pissed off at me and it just decided to fake me out, because it was in a mood. And if some of these results are in fact true allergies, join me in crossing my fingers, eyes and toes, that one of them isn’t f-ing corn. I’ll seriously take all of the rest of them as true allergies as long as corn isn’t one of them (knocking on wood so the universe doesn’t b*tch slap me with corn, just for hoping that it isn’t).

I drafted the above paragraphs the day after I received the results, and I’ve been letting them sit so I could go back and write it to show both the reaction to the testing, and the later consideration after I’ve had time to think about what it means. Which would be good if I were at that point, but the thing is, I’m still reacting and in denial. I haven’t started the elimination process because my doctor appointment with a new primary care practice (don’t get me started on that whole thing) isn’t until later today, where I’ll start the process for getting testing for celiac. I don’t think that this will become real until after I try to eliminate everything and see what is actually is causing the problems and what isn’t, although the possibilities are causing huge anxiety. Also, if it’s corn, and I have a reaction to Earth Balance and have to make my own margarine, I’m probably going to have a huge temper tantrum. I’ll try to contain it and not expose the blog reading public to it, and try remember that at least I still have the option to make my own and be positive, but I may be cranky for a bit. Being optimistic and positive is not one of my normal states of being (and anyone who knows me in real life is probably busting a gut laughing right about now at the understatement). I’m also trying not to get ticked off in advance by stuff I might never be able to buy or use again until I know that I have a reaction, but I’m anxious about it. And at the same time, I’m afraid that even if all or some of this round of positives are allergies, that this isn’t the end. From the original diagnosis of three food allergies in 2000 to the testing in 2011, I added six additional food allergies. Now in a two year span, I’ve added another seven potential food allergies with this round of tests. My pointed little logical brain can’t help but say, “so does this mean that I’m just going to keep adding more food allergies over the course of my life?  I’m 41.  What will be left for me to eat?”

I’ve been through this before, so I know I’m just going through the normal stages of this process, and I know I’ll get to the other stages eventually. Like being at the place where knowing is better because I can control it and I will feel better and be happier once I have a handle on what the problem is. But I’m just not there yet, I’m still angry and anxious, which causes me to be more angry because I seriously don’t like being anxious. Before I got the results, I thought I was ready, and that it wouldn’t be this hard this time around because I’ve been through this twice before and you’d think I’d be used to it. Oops, guess not. I thought about waiting to share this post until I had moved farther along the continuum, but maybe it’ll help others with first time food allergies realize that this is part of the process and it’s okay.

Anyway, that’s the beginning of the new battle, just as I thought I was getting the handle of things with the other nine. Any helpful references or pages you guys have for any of the new list, would be most appreciated. I’ll be posting some updates as I do the elimination and challenges.

Be careful out there.