Saturday, May 12, 2007

It's Food Allergy Awareness Week! 5/13-5/19

Wow. I've been managing my food allergies for four years, and up until I got an email from Ria (from I've have never heard of Food Allergy Awareness Week even though I vist the FAAN site often. (Is there a Food Allergy Awareness parade? Do you get time off from work? Can I wear a funny hat?) *sigh* If only it were that easy to just go outside, wave a flag supporting whichever issue the holiday/subject/celebration and then move on. But for us food allergic types, EVERY week is Food Allergy Awareness week!

The assignment was to submit a personal story about food allergies. Check out the other stories collected by Ria at Checkmytag's community forum. I think my theme is about personal empowerment, because while it's an important subject for all peopledom, it's especially important for us food allergic people and we need to encourage it. Food allergies must have reached the tipping point because I've read at least three articles in the past few weeks related to food allergies, hurray! However, one was from the NYT, who usually does a thorough job in analyzing new topics, but annoyingly turned out a total fluff piece "The jury is still out on gluten". This story was both vague and alarmist...grrrr. Essentially, the medical community doesn't absolutely confirm the effects of gluten allergy on non-celiacs, yet doesn't have a standardized test for gluten allergies, but generally frowns upon self-diagnosis and voluntary elimination? Whaaaa?

This is just one of the seemingly "helpful" articles out there. Food allergies are becoming more common, especially in children, and we're going to be receiving lots of misinformation. (For example, I recently saw a "gluten-free" recipe that recommended substituting matzoh crumbs for bread crumbs. Hel-lo people, matzoh flour is WHEAT. It's unleavened wheat, but it's still wheat. What kind of moron did the research on that?) There are obviously no clear answers for food allergies in the mainstream media. And conversely, there are no clear answers in the alternative health media either. (I'm sorry, but I don't buy the theory that my food allergies are a result of emotional trauma or energy blockages.) Since there is no 100% surefire way to treat them (like getting shots for environmental allergies, which I already do), the only choice left to everyone is immediate avoidance. There is no getting around it, people. But even though it is an everyday chore, I'd like to remind everyone that it is SO worth it. Managing food allergies should be considered a part of a healthy lifestyle, like exercise. Having a body that feels clean, strong and focused is worth fighting for. Because I avoid foods that are toxic to me, I feel vibrantly healthy and energetic -- similar to the endorphin rush you get from exercise, or the post-surf buzz after playing in the ocean. Allergy-free health is intoxicating. I'm an adult and can explain the drastic differences being allergy-free has been for me. Can you imagine how frustrating it would be for a child to not be able to tell you how and when they feel badly due to food allergies? Or if even worse, in life-threatening situations? I'm advocating empowerment for them too. We MUST share real information and facts as well as educate people with calm confidence without being overly dramatic and hysterical. Thank goodness for all these thoughtful people who are contributing to this effort.

I discovered my food allergies in a roundabout way. From childhood, I'd always had hay fever/seasonal allergies, asthma, regular bouts of bronchitis and chronic insomnia. I was always the kid sitting on the sidelines during gym class because of my asthma. As an adult, after years of complaining to my doctor of exhaustion, he sent me to an allergist who determined my extensive environmental allergies (mold, dust, grass, pollen, trees) where slowing me down. Shots worked, it was great. Fast forward to TEN years later, I was struggling with arthritis-like joint pain, severe hormone swings that lasted for months, a few unexplainable bouts of mild depression, and a first-time problem with my weight that I could never seem to manage, both with diet and exercise. The year that the Atkins diet set the world on fire (summer 2002), I tried it and it worked like MAGIC on me. I never felt better. About six months in with almost no grains, I was stuck at the mall during lunch and ate a sandwich. I immediately felt awful: stomachache, sinus headache and I felt like I got hit by a truck. After looking up my symptoms on WebMD it indicated that I might be allergic to wheat, so I trotted off to my allergist for a scratch test. Watching the 20 or so bumps (out of 60) on my arms swell to the size of a pencil eraser, I was informed that not only was I allergic to wheat, I was allergic to dairy, soy, rice, garlic, blah blah blah..see my partial list in my profile box. My allergist had never seen anyone who was SO allergic (3++ out of 5 on most things) to so many foods. It was highly unusual. (Think about it, if you can shock an allergist, you know it's really out there. Call the X-files!) On a sweet note, my allergist sincerely apologized for not testing me earlier. "I could have saved you 10 years of suffering. From now on, when new patients come in for testing, I'm also going to test them for food allergies. Allergic patients are allergic patients." (Look ma, I'm a pioneer!) So after the shock of realizing that I could never eat Chinese food the same way again, I began the elimination/substitution process in earnest.

Just after a few weeks, people who didn't know about my allergies commented that I was "glowing". They guessed that I was in love (sadly it wasn't that!) but really it was my body finally getting the chance to operate at maximum efficiency for the first time EVER. My weight became a non-issue. Actually I weighed about the same post-Atkins, but I've "de-puffed" and lost inches. What I thought was fat was actually years of cumulative inflammation. My joint pain all but disappeared (it had gotten to the point where I was soaking my hands in hot paraffin for relief). The skin on my face looked five years younger. I actually got a deep, restorative full eight hours of sleep for the first time in 40 years. (You'll wince when I share that during my frequent nights of insomnia I used to get up and have a warm glass of milk, or a piece of buttered toast...which would send my system into red alert and keep me up all night.) I felt so good that I took myself off my asthma meds (I notified my doctor who wasn't happy about it) and haven't had an attack since. I also get acupuncture and chiropractic occasionally to help my body heal itself as naturally as possible.

The cosmic tumblers continued to click into place...having cooked all my life and been a caterer for a few years, that Christmas (after a consulting gig fell through) I began working part-time at Surfas, the premier gourmet food and restaurant supply store in Los Angeles. Purely by coincidence, I now had more resources and information in my hands to do more investigative research and cooking for my food allergies than ever. AND, I was running into lots of people who came in to ask for help in managing food allergies for themselves or non-cooking loved ones. So I began keeping track of my experiments, tips and recipes to eventually pull together a cookbook to share what I had learned. My blog was started for my friends and family to help them better understand my situation, and also serve as a framework for the cookbook. I must admit that I've been mildly shocked at how obtuse people close to me have been about the level of maintenance it takes to survive day to day with food allergies ("I had no idea how hard it must be for you, every day." "Hm, your allergies seem out of control."). Eeek. I guess most people assume it's sorta like being on some weird diet, rather than the fact that food allergies dictate your lifestyle...and even your worldview.

Whew! Where does this leave us? I'm basically reiterating what everyone has experienced at one time or another. That due to ignorance, generally well-meaning people will be confused, non-supportive or even downright dismissive of your (or your child's) food allergy needs. (Someone condescendingly said to me once "Do you mean you CAN'T eat that, or WON'T eat that?" Nice.) Some people are just jerks, and we'll have to get that said right away. Just as long as they're not the jerk who has the power to kill you or a loved one, we just need to bless them and move on. But I've found that most people care, that they react mostly because they just don't know how to help. (Or they've had to deal with some REAL drama queen/king out there who fakes food allergies just to avoid unwanted items. There's a special place in hell for those people.) We're living in a time of increasing ignorance about food in general when we're surrounded by fast food and pre-made ready-to-eat grocery items (when I told a friend that I couldn't have a sandwich because I couldn't have wheat, she blinked and said, "but you can have white bread, right?" Oy.).

We need to be empowered to be open to learning as much as we can -- be our own advocates and the advocate of our loved ones, especially kids, who don't always have the ability to argue with grownups (which is why checkmytag and allergicware are such great ideas). It is our duty to explain to people, calmly, that this is a medical condition that in extreme cases can lead to death. Provide them examples of alternative foods and recipes that will work rather than just giving a list of restrictions...(this is what leads to the jerks feeling put out and labeling you as being high-maintenence), the host or hostess will be SO grateful that they can treat you as a guest without fear! Like the boys scouts, be prepared. I always eat something before I leave the house, even when going to a dinner party, so that I don't accidentally end up wolfing up a hidden allergen on an empty stomach. I've found it helps tremendously to be gracious about sharing information, because people resent being made to feel helpless and without solutions. Try to eat organic food whereever possible, it appears that toxins/pesticides affect the immune system of food allergic people a little more drastically. And of course, be smart about your choices. Don't go to an Italian restaurant if you can't have wheat and dairy where you'll be frustrated that you can't eat anything (go to a French bistro instead and get yummy steak frites as pictured!). Be sure to carry an Epipen, just in case. But most of all, be glad that food allergies are something over which you can have some control and the opportunity to generate powerful and postive results, unlike many other illnesses that could befall us.

Go team.


Allergic Girl® said...

bravo for your excellent post FAQ!

ChupieandJ'smama (Janeen) said...

Great post!! As an allergy mom I have people say to me " I don't know how you do it? If it were my child he'd starve". I don't know if they think that is helpful or a compliment, but it's not like I have a choice. If I'm not vigilant or cook for him, he would become very ill or worse.

Anonymous said...

Awesome post. I've been struggling my whole life with people calling me "crazy" when I read off my list of things that I can't eat. I have not had any allergy testing (for foods) to date, it seems that I just use trial and error. If I get sick, I just don't eat it again. I am now reconsidering this decision. Anyway...awesome post and awesome blog...THANK YOU!

Unknown said...

Great post. I'm allergic to celery and when I tell people, I get the same thing. You're allergic or you don't want to eat it? It gets pretty annoying..all of the time. But your post has reminded me to be kind to jerks. They just don't know.

Unknown said...

Great post. When I tell people I'm allergic to celery they usually say "But its just water and fiber" or "Are you REALLY allergic or you just don't want to eat it?". This gets pretty annoying sometimes. Your post has reminded me to be kind to jerks because sometimes, they just don't know.