Saturday, January 30, 2016

The Road Less Swallowed: My Allergy Discovery Journey [Pt. II]

[This is the second part of this article. If you have not read Part I, click here.]

Part II

At the end of Part I:
For those two weeks of preparation for my elimination diet, I pretty much ate chicken, rice, and vegetables. I brought carrot and celery sticks to work for lunch -- in fact, walked around the office munching whole carrots with greens in the Bugs Bunny way that I enjoy, and even talking like him most of the day. I would get the occasional rice bowl if I went with my team for lunch, but basically had what I was eating at home: chicken, rice, and vegetables. Without at least bread and cheese being involved, it was a pretty dull time, but I did lose a bit of weight eating that way. The main positive side effect: my cough totally stopped. 

And then came the time to start adding the major food allergen groups back into my diet, one by one. But where to start? As I had mentioned before, these were the groups that I had been avoiding during the prep period: eggs, milk (dairy), peanuts, tree nuts, wheat, shellfish, fish, and soybeans. Any one (or even several) of these could be the main culprit in triggering the eosinophilic esophagitis that had invaded my system. 

I have already written of the extreme and constant coughing fits that had basically overtaken my entire waking life (not to mention some of the sleeping parts too), as well as the frequent vomiting that I thought was a direct result of my gag reflex due to how much of a strain the hardcore coughing was having upon me. But there were other symptoms that sprang to the fore nearly every time the cough occurred. 

The creepiest was facial numbness, usually beginning around my mouth and nostrils, and most often concentrated in my upper lip. While there was no outward appearance of the lip having puffed up, that is exactly what it would feel like to me, and there was also the sensation of it growing rigid and immobile. My throat would seize up slightly, as it felt like something was always caught in it that could not be retrieved. And then there were the instant headaches that came not long after one of the other symptoms would arrive. Thankfully, there were no external manifestations such as hives or rash, though I suppose if there had been something easily recognizable in a physical sense to those would lived and worked around me, this whole thing might have gotten figured out much quicker than it did.

But the cough was the bugger. It was the Big Kahuna. At the point where the prep period of the elimination diet, I had been living with that cough for over two months. With this particular cough, that is. You see, there was precedent in my life, and fairly recent precedent at that. 

Looking back, the signs that something had changed for me internally went into the past at least three or four years. In that span, I had been to the doctor at least three times to have them aid me in ridding myself of what I thought was just a nasty and persistent cough due to the belief that I had a cold that simply refused to leave my system. And yet, while the doctors would eventually prescribe a strong cough medicine to me, every single time there would be no sign of any fluid in my lungs. I would get treated for bronchitis over and over in this brief span, and I know that my constant bouts of coughing were driving Jen crazy at home, let alone my office mates. 

Add to this the mental stress that had also come into my life within this same period due to my ongoing depression and eventual thoughts of suicide [which you can read about in Why I Write: The Blur of the Past Two Years on my main blog site], and I can see that maybe I should have been more proactive in trying to identify the factors that were severely altering my personal happiness and comfort. But, no... I just kind of moved on from one brief period of feeling crappy to another, determined to simply move forward and worry about the next problem when I got to it.

There had even been many small bouts of coughing and the other symptoms I mentioned that didn't explode into large enough problems where they caused me to seek medical attention. I just never really identified that all of them occurred not long or even immediately after I had eaten food of some type. But the facial numbness was definitely not new to me, as it had happened to me many times before; once, years earlier when I still lived in Alaska and near the beginning of my relationship with Jen, it became a large enough worry that I stopped eating hazelnuts, thinking that I was allergic to them. In retrospect, I realize now that my "scientific" deduction behind my banning of hazelnuts was severely flawed, and that this actually may have been the earliest trace of the discovery of my actual food allergies to come.

And just two weeks before the Disney World trip that September where my internal workings went completely haywire, I had what I thought was also a battle with food poisoning. We had visited the Lazy Dog Cafe in Orange (California, near where we used to live), and not long after devouring what was a fairly delicious plate of penne tossed liberally with chicken and mushrooms, I began to feel "not so well". I then missed the next two days of work in what can now be seen as a mere warmup to my Disney World misadventure. The thought at the time was that either the chicken or the mushrooms was the villain of the day, and it was indeed the last time that I ate at the Lazy Dog Cafe. Hard to go back to places which you feel may have made you deathly ill, even if you quite like them overall and really don't hold a grudge. For the same reason, while I love visiting and dining in Epcot, that Canadian steakhouse is now completely off-limits to me. (I am still unsure whether the Lazy Dog incident was actually food poisoning, though I am completely sure the Epcot case was because of the inclusion of a second party - Jen's mom Sande -- who also got seriously ill from the same shared dish.)

All of these thoughts where I slowly connected the dots of the past few years began to percolate in my brain as I approached the moment where I would start adding the major food allergen groups back into my diet. Of course, the main purpose was to identify the cause of my illness, so I could hopefully reduce or eliminate those nasty eosinophils in my esophagus (when you look at a picture of my esophagus, they appear as these pernicious red dots clustered all over it) and upper gastrointestinal tract so that I could start to feel much better. But, while preparing to launch into this detective work, on a superficial level, I was more concerned about getting back to eating those things I missed the most.

In looking at those eight major allergen categories -- once again, 
eggs, milk (dairy), peanuts, tree nuts, wheat, shellfish, fish, and soybeans -- two of them could be discounted right away. I am the rare Alaskan who does not like to eat fish. Especially salmon... I do not like salmon. Ate way too much of it as a kid. I will eat fish, though, on occasion. I am partial to the rare dish of blackened redfish or some deep fried catfish. And I love halibut, unreservedly. Halibut is my "go to" fish. But at the time of this drastic change in my behavior, it had been over a year since I had eaten any fish. The only possible contact would have been through the use of fish sauce in many of the Thai and Vietnamese dishes that I enjoy frequently. The same goes for shellfish. I don't find the eating of crab or lobster either enjoyable or aesthetically pleasing (can't get past the "giant bug" factor, though I do enjoy their company on a personal level). And while I hated, hated, hated eating shrimp since I was a kid, in the decade before this, I had finally come to terms and learned to enjoy them as food on occasion. But once again, it had been well over a year since I had eaten any shrimp (I never went out of my way to seek them out), so they were a decided non-factor in my case.

That left me with six groups, and there was a clear winner amongst them which I desired to eat the most: wheat. I missed bread from the second that I stopped eating it two weeks earlier. Most of all, I missed French bread. The wait seemed like an eternity, so programmed I was into having toast every morning, and having at least one sandwich a day. Plus, the use of common flour (derived from wheat) in nearly every one of my favorite dishes in some aspect or another made it the obvious choice to work back into my diet. And so, the day before the grand reintroduction, there was a quick trip to the grocery store refill our coffers with several items; specifically, bread (whole wheat and a loaf of French bread), pasta (we chose a whole wheat brand), and flour tortillas, with which I was planning to make a chicken burrito (sans cheese, of course, since it wouldn't be worked back in yet).

It was Friday morning, the first of the wheat test, and I started the party off, naturally, with some simple wheat toast. No butter and no peanut butter, like I would normally include, since they were still off limits. As I ate it, I had no problems. But later, on the way to work, I began to cough again for a short while. Still, it could have been the fact that I was walking very fast on my then usual 3.5 mile trek to the office, and may have been winded or caught my breath in a strange way. For lunch, I went to the Jack in the Box across the street from the office and had them make me a plain grilled chicken sandwich, with just tomatoes and lettuce and no cheese or other condiments. (I added ketchup however.) Again, there were no problems as I ate, but a little later when I was back at the office, a small cough started up and I was slightly agitated in my throat. By the time I got home, I had a bad headache that caused me to lie down for a couple of hours.

We decided to go for broke with dinner. Jen made a whole wheat penne which we paired with a marinara sauce that we knew was clear of the other food groups. She brought the bowl out to the couch to me, where I was still feeling poor from the headache. I took one bite of the pasta, and sat back holding the bowl to my chest, happy to get to taste it again. I took another bite... and then I started to feel my upper lip and nose go numb in the way I had encountered sporadically over the past couple of years. I twitched my nose and only had the faintest sensation in it, and at the same time, my lip felt increasingly rigid. And then the cough started, a series of horrid, hacking rattles that kept getting deeper and more pronounced. After a couple of minutes of this, I started getting the dry heaves, gasping for air somewhere in between the coughing and the retching noises. I became flushed and I felt a coldness rush through my forehead briefly before I started to feel an agitation throughout my system.

Jen had already decided shortly in to my latest attack that I was to not take another bite of my dinner. She grabbed the bowl of whole wheat penne and my fork from me and moved them into the kitchen. I continued to cough and gasp for air for a short while more before I started to settle down. Then the cough came back, and I had to run to the bathroom where I vomited slightly. After that, all was quiet, as I settled back down onto the couch with an icepack for my still throbbing headache.

Through that weekend, I actually stayed mostly away from wheat products of any sort, including the ones we had purchased specifically for testing, already mostly convinced that we had found the culprit behind my illness. I say "mostly," because I did eat a hunk of the French bread, and there were no effects when I did. On Monday, I felt confident enough that I decided to try just a couple more things before I called it for good. I skipped breakfast, but I tried a burger for lunch, and again, the results were that I didn't feel any disturbance until a short while later when I began coughing for a short period. Because of that, for dinner at home, I continued to eschew any of the allergen groups and stuck to simple rice and veggies. 

I didn't try again until Wednesday, where I again had plain wheat toast for breakfast, with only minor results (throat agitation and a slight cough). Lunch for me happened at the end of my work day, because I worked straight through eight hours so I could leave the office early to run a couple of errands. Hitting a local taqueria, I devoured a steak burrito, once again sans cheese. I was so happy to taste a flour tortilla I didn't really think about the consequences. After cramming down the delicious burrito, I took care of my errands at the bank and a nearby store and made my way down the sidewalk towards the bus stop. Then the cough came back, and the numbness came back, and then there was a great hurling of partially digested consumables in a four foot span on the sidewalk in front of me. I made it to the bus stop and grabbed the sign for support, still coughing and still bringing up everything that I had just eaten a short while earlier. The cough rattled on through the bus ride that took me within a little less of a mile from our apartment, and I kept having to stop on the walk home to spit and cough several times before making it through the door.

That was it. I was done. No more wheat that week.

With Friday came the next group on the list that was most important to me: milk (dairy). I don't drink milk normally, and I didn't that week either, but I did partake of many varieties of cheese, none of which caused any problem with me at all (unless you count artery hardening). And so it went through the rest of the list: I made soybeans third, because Jen and I include tofu and edamame in a lot of our dishes at home, since Jen is a hardcore vegetarian and uses soy as a prime protein source. No problem. Eggs, nuts, and tree nuts all went off without a hitch, though it only took a couple of attempts with each to determine that there were no undesired effects from their use. And I felt no need at all to even try fish and shellfish during this course because I never craved the second one and only had the first on rare occasions. [This perhaps was a mistake for completion's sake, for reasons I will explain in the third part of this article.]

When it came time to report my findings from the elimination diet to my doctors, after hearing that wheat seemed to have been the cause of my long stretch of discomfort, they suggested that I switch from that moment on to a diet that was free of wheat altogether. Which I pledged that I would. When we got home, we went through our cupboards and removed any food items that were used primarily by me that contained any amount of wheat at all. It was also the moment that I realized that I would be reading the label of every single food product that we purchased for the rest of my life (not a bad practice to get into anyway in general, allergy ridden or not). 

Then the research began. I discovered quickly that the best way for me to deal with a wheat allergy was to go gluten-free, a slightly wider avenue that also includes rye and barley. I was, however, not considered to be a celiac. And I didn't have to be gluten-free necessarily. I had no stomach discomfort at all when I ingested wheat. My symptoms were only based from my esophagus upward. But gluten-free is easier to explain in stores and restaurants, because there is already a culture and consumer base built around it, and trends built off of that culture (for better or worse), and as a result, there is also considerable cultural bias against those who practice the lifestyle, whether out of a health necessity or trend-based. (And the most vocal naysayers make little distinction between the differing types. They prefer to remain cynical and insult everyone that chooses to be gluten-free in a trolling version of throwing spaghetti against the wall to see if it sticks. That's fine, as long as it is gluten-free spaghetti. Thanks.)

And thus, I had officially entered the world of learning to deal with a food allergy. I was judged to have a need to be wheat free, and I had to figure out a lifestyle built around that fact. But, like many who enter into this, depriving oneself of favorite meals in the style to which one has become accustomed is not an easy thing. I would slip up many times before I finally settled into full conformity with this lifestyle. I still had many lessons ahead of me, and it would take another full course of doctor's visits before I would learn to behave.

[To be concluded in Pt. III. Read it by clicking here.]

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