Thursday, February 01, 2007

Today, I'm simply going to talk out loud.

A friend of mine has two young kids who obviously react to traces of corn. She recently was priviliged to see a top allergist in the country. She was hopeful for answers, guidance, maybe if nothing else...some sort of explanation and if nothing else, some validation. As a parent, its scary to limit your child's diet. Especially without guidance from the medical community.

What she got was a slap in the face.

Those of us who have traced our painful symptoms to specific foods know that IgE allergies are life threatening. And that other "sensitivities" don't necessarily show up on food allergy tests. But we have done research and found studies that link our symptoms with food intolerances, or even allergies. Some of us are lucky enough to have allergists or gastroenterologists who have been around long enough to know that, regardless of current testing standards, some people have negative reactions to food. Foods can cause debillitating symptoms.

But this dr told my friend that her observations are not valid.

Of any good parent, she will not harm her kids simply because the dr tells her to. She won't ignore their rashes and physical pain because this one specialist tells her they aren't really related to what they eat. (Just because it always happens when they eat specific items doesn't mean a thing.)

But this feels like a blow, not just to her but to all of us who find food as a definate trigger for physical symptoms.

This was a top specialist. One that other drs respect. An authority, if you will, on the subject of food allergies. And he doesn't believe in them, unless they kill you.

I don't know about you, the average reader who has stumbled upon my ramblings, but I don't want to die to prove a point. I don't want anyone to have to die, or come anywhere near it, to make the medical "community" say as a whole that food induced reactions are real and valid and need to be addressed. Nor do I want to suffer while waiting for this sudden realization. I'm not crazy about limiting my diet (I don't know anyone who'd choose this for the fun of it) but its a whole lot better to eat a few simple, prepared from scratch foods than it is to require a bottle of pain killers to function on an okay basis.

Regardless of what the gold standard testings have revealed, I don't have atypical rosacea, unresponsive IBS, abdominal pain of unknown origin, possible fybromyalgia, chronic fatigue, "Huh, thats weird," "Just stress," or "How interesting". I have symptoms which are clearly linked to the ingestion of certain foods. I don't know the best way to define these reactions. I'm not sure my doctors do either (though at least they were the ones to diagnose me, and support my belief that corn is the main culprit, they also diagnosed me with celiac disease; another food related illness that does not fall under the title of "allergy" but prior to diagnosis could be suspected as a wheat allergy) But they say allergy is the best description we currently have.

I think that we are in need of a new branch of medical science. A new Doctor with a specialty in food mediated illness. One who can dabble in diabetes, be up to date in celiac research, and be consulted for rashes, GI troubles, asthma and any other symptom that doesn't seem to have a direct cause. Or if the direct cause appears to be food related, but the symptom isn't life threatening. (For that matter...they might specialize in the life threatening reactions as well.)

There are very few studies done beyond anaphylaxis or lactose intolerance. And yet, those studies that are done and are on pubmed such as this one indicate that food can be the culprit of pain and symptoms without being a classic IgE allergy.

We know not to eat what hurts us. But, how do we know whats hurting us? How do we know whats really in the foods we eat? Corn is an eye opener. It can be on waxed fruit, in enriched rice, it can even leach into water from degrading "environmentally friendly" water bottles. What else is out there that is hurting someone and they just can't figure out what it is? Without validation from the medical community, we can't fight for full disclosure. We can't trust doctors and hospitals when we're sick. This post highlights the dangers for corn allergic individuals (although the poster is actually anaphylactic, and requires an epi pen) And what about other allergies? I've heard from numerous people with Celiac disease horror stories of being in a hospital, or donating blood and being in a situation of semi conscioussness when they could remember enough to say "I have celiac disease" and the nurses will say "we know" and hand them crackers. Or toast. Or cookies, to raise their blood sugar. And being dazed, in a position of dependancy, the patient will obligingly nibble...assuming that this is what is needed to get well. Until the cramps set in and pain brings them to the realization that their concerns were being blown off by caring individuals, and that the food they were told to eat "to get better" just poisoned them.

Something more needs to happen. And soon.