Cindy Koepp

Writing on the Edge

A Practical Guide Food Allergies

Hard Hat Zone!

Info is still on the way.

I learned about food allergies the hard way. 


The goal of this section of my webpage is to help you get the info you need without the convoluted mess I dealt with.


How I got there.

When I was a little squirt, I would get sick whenever I ate strawberries. Anything else was fair game, but strawberries were evil.


Some time later, strawberries weren't evil anymore, but peel a carrot or potato when I was in the room, and I started playing most of the Seven Dwarfs. Y'know, Sneezy, Sleepy, Grumpy, Dopey, and eventually Doc. Not fun. Once the spuds and carrots were cooked, though, all was well with the world. That stayed that way for a couple decades. Weird, huh? 


Fast forward to 20-(very)-odd years ago. I got sick. Incredibly sick. I lost 30 pounds in about 60 days without changing anything about my diet or exercise. (Sounds like a bad weight loss product commercial.)  At the same time, I felt generally rotten. Exhausted all the time. Joint pain and twitchiness reached all new highs. My body was acting like all the hormones were totally outta whack. But the medical community could find nothing wrong. Tests were done. Theories were checked. One doctor even insisted on checking for inherited diseases that weren't anywhere in my family line and communicable diseases I had no risk factors for. Nothing. Everything came back stone cold normal. More than one doctor tossed in the towel.


That went on for a year.


Grabbing at straws, I asked if it might be allergies to foodstuffs. Pfff... no. Food allergies don't cause those kinds of symptoms.


I went to an allergist anyway, and he agreed that the likelihood of food allergies being the cause was somewhere between slim and none, but we checked anyway. Yep. Using blood tests, we found 6 food allergies and using skin tests, we found I was allergic to 3/4 of the state of Texas (all grasses, all but one mold, over half the trees, cats, dust, ... just ... pretty nearly everything). Gah...  I eliminated the offending foods from my diet, and bingo! Joint pain faded back to normal-for-me. Same with the twitchiness. Apparent hormone malfunctions stopped. Everything returned to normal except my weight, which stayed in the double-digit arena.


Being a creature of habit, I settled into a routine of different foods that weren't on the allergy list. I learned to make some things from scratch. Bread-making with a machine was a weekend occurrence. I found a handful of ready-made products that were safe, including stuff I'd never had before like matzo crackers. Confused the fool out of some cashiers at the grocery store when I checked out with matzo crackers and shrimp in the same cart.


Some folks thought I was faking it or thought that I could have a little of the food allergens. "Just a little won't kill you." No, but it sure did make me sick. I learned pretty fast that potlucks and buffets were not an option, and that I needed to bring my own food to events.


Then 5 years later, it happened again. Only this time, instead of joint pain and apparent hormonal malfunctions, it was a killer headache, an increase in my seizure activity, and a peculiar blue stripe like an afterimage in my right eye that would stick around for hours at a time. Back to the docs who tried me on every headache medication and anticonvulsant they could find. No joy. Didn't even put a scuff on the shine of the headache and often had totally disagreeable effects on the seizure disorder. The anticonvulsants had zero effect on the seizures (twitches and tremors almost entirely, nothing dastardly like grand mal) ... except one that fixed the twitches but caused suicidal ideation. Uh... no thanks. Fortunately, I'd learned metacognition very early on in my adventures. I figured out where those thoughts were coming from and dealt with it appropriately.


One doctor advised me to keep a log. How bad the headache was on a scale of 0-10 (0 = no headache. 10 = the worst ever), how bad the twitches and tremors were, when the blue image showed up and how long it lasted. She was looking for a pattern, but none jumped out.


Nine months later, I ended up talking to a neurologist associated with a headache clinic. She had a specialization in reading EEGs and dealing with seizure disorders. She made several interesting discoveries, but the most interesting to the headache and increased seizure problem came after she looked at my medical history and suggested that food allergies might be at fault again. She had me add foods to the log I was keeping.


Poof. There was the pattern. The headache got worse some days and backed off other days. The seizures got more or less intense on a different pattern. It all seemed to relate to food. 


The neurologist suggested I find dietician to talk to. Only problem was that they'd only set an appointment for me if I had diabetes or cancer. Food allergies, not their bag. *sigh* I did find one who would talk to me after hammering home that insurance wouldn't cover it, so I'd have to pay outta pocket. Fine, no problem, just help me out! Folks, she gave me a high school nutritional health lesson. Seriously. I'm science specialist in education with a degree in a biological science. I left there knowing nothing I didn't know when I walked in.


Argh.


A local health food store had a nutritionist on site to chat with folks about improving their health. So, I set an appointment and learned the most important bit of info ... something that I would have liked to have learned 5 years before. If you have food allergies, you have to rotate your diet to avoid developing more food allergies.


What? Really?? News to me.


She also taught me about how to do an elimination diet and walked me through a couple tries at it then helped me do a little menu planning.


Using that information, I discovered that my food allergy list had jumped from 6 to 50. Then, as a result of doing the trial and error to find out how widely separated my food rotations had to be, that gradually scooted up to 65 allergens. Wow. Just ... really? I wouldn't've guessed there were 65 foods to be allergic to.


As I wiped out the new list of non-foods, the headache went away. The seizure rate returned to normal-for-me. Even my weight started creeping back up to normal-for-my-height.


Since food allergies can shift around now and then based on how well you wipe out the allergens in your diet, every year, I would recheck some of the things on the list. I was able to add some things back into my acceptable munchies list. Unfortunately, other things got the boot. This pattern continued for about 15 years.


Then another fine mess happened. A blood test showed that my cholesterol numbers were out of bounds. I can't take the medications that deal with that because they contain one of the things I'm allergic to (and I react very badly to long-term medication anyway), so I was told to mutate my diet. Yeah. The one that's already a disaster area because there were 65 things I couldn't even think about eating without getting sick. 


So, I figured out a menu that would work with the new rules being imposed upon it. By the end of the 6 month recheck, sure, my cholesterol numbers were lower (still not in bounds, but lower) ... and my weight had gone through freefall. I was 15 pounds underweight for my height, joint pain was more impressive, twitches and tremors were going wild, and I generally felt like junk. Not to mention being hungry. All. The. Time. Terrific. But, the doctor was happy with the cholesterol numbers and uninterested in talking about the rest of the mess.


I resorted to net nerding to find all the info I could on dealing with food allergies. I mean, in 20 years, there had to be new research, right? I found reference to functional medicine having something useful to say on the matter, so I found a functional medicine specialist in the area and set an appointment. He ordered a pile of blood tests to look for autoimmune problems, food allergies, and the rest of the usual tests. Interesting results.


The autoimmune tests showed no problems. Yay!  

The food allergy tests showed not the 65 I'd found through elimination diet testing, but 16. (and I found as I added stuff back to my diet that another baker's dozen cause goofball games with my seizure rate, so I added those into the food allergy pile, too, even though they're not actual allergies).


Y'see, the problem with elimination diets is that you can react to a food immediately (like anaphylactic shock reactions) or up to 72 hours later. So, an elimination diet might be handy for some things, but if you use that as your source for diagnosing problems, you might end up with a lot of false positives.  Eep!


I gradually mutated my diet around the results of the recent testing and my weight came back up. Joint pain and twitchiness went back to normal-for-me, and we worked out a diet plan that focused on eating foods that actively reduce cholesterol and limiting foods that increase cholesterol. Moderation in all things Including moderation.


And that's where it is today. I have a list of about 30ish non-foods and a dietary rotation rate every 3rd day every other week. In other words, if I have mushrooms for dinner tonight, I can't have had mushrooms tomorrow or the next day, and none allowed next week, either.


It's a mess, but I feel better now and I seem to be cruising along okay.