WW: Making Your Own Lifeboat

What does your lifeboat look like?
What does your lifeboat look like?

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.

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