Wednesday, February 3, 2016

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

[This is the third and final part of this article. If you have not read Part I, click here. For Part II, click here.]

PART III

At the end of Part II:

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.

I slid into my new wheat-free world determined to make a go of it. A final follow-up with my GP (general practitioner) after the results of my tests and elimination diet had been determined allowed me to set my mind to righting the ship. My cough had not come back during the last few weeks where I went through the other allergen food groups to find that wheat was the only one that set me off my symptoms. (Again, I will remind you that I skipped the fish and shellfish groups because I had not eaten from either group in so long I had decided on my own that they weren't a factor.) I was already starting to feel much better. I was able to focus more on work at a very crucial time in our corporate calendar (preparing for the giant soccer convention that we hosted annually then). My general attitude lightened to its normal, playful, pun-spewing level, and I was feeling more hopeful heading into the new year.

For the first couple of months, having to be wheat free and learning how to find my way -- really our way, since Jen was deeply invested in the matter on my part -- was kind of thrilling and I naturally approached it as a game or a puzzle that needed to be solved. (That's how I approached it; I can't speak for Jen on this.) Learning where the "gluten free" sections of different supermarket chains were (sometimes broken up into several areas in one store, then completely different in the next) was the first "game" that I had to be conquer. I had to learn to get used to the unreliability of brands or products being in stock from trip to trip when I needed them, or even a brand that I found one time being available at all in the same store the next time. We read the labels of every single item that went into our cart extremely carefully, for both myself and Jen, who is very strictly vegetarian (which, of course, meant that I tended to eat that way at home about 85% of the time).

Finding the best restaurants to cater to my new need was the next game. Every single menu was a brand new labyrinth that needed to be negotiated. We found out quickly which restaurants were more open to catering to all customers, no matter their concerns, and which ones were just outright bastards who didn't really care at all about their customers. In these scenarios, even just having one or two gluten-free options on your menu or the willingness to lettuce-wrap a damn burger would mean the difference between collecting my money as a happy visitor to their establishment on a regular basis, or our boycotting the place altogether, with my bad mouthing their business to everyone that would listen online and in person as a side dish. And believe me, I have been laughed out the entrance of more than one place when I have asked about allergy free options. (This can generally be attributed to the widespread belief that such diets, of any stripe, are nothing more than trendiness, so why should they cater to people who are just acting out on a whim?)

As I said, for those first couple of months, it seemed like a big puzzle, and I was deeply committed to figure every angle out for myself. However, it didn't take long to discover that if I wanted to eat like I used to in public places, "Frustration" was the true name of the game. I could handle things at home just fine, since Jen and I are always open to trying different products and recipes to find common ground for ourselves in the dining arena. (Jen is to be admired for how willing she has been, without my even asking, to partake of gluten-free pastas and the like in converting our standard menu at home.) 

Out of this frustration, I had started to have cravings, and the tension was building with each day. I wanted to be able to walk into a pie joint and just grab a big, greasy, cheesy slice of pepperoni pizza -- with real dough! --  made fresh and much larger than the standard slice on a gluten free crust. I wanted to be able to walk into a burger place and get a double cheeseburger with everything on it... including a sesame seed bun that was as soft and pliable as real bread. I really, really missed having a breakfast burrito, with the eggs and meat and salsa and cheese all rolled up in a giant flour tortilla. And, most of all, I was drawn ever more to devouring a submarine sandwich, a relentless craving which I attribute to my deep, abiding love for French bread. I wanted all of these foods, they were all around me in every direction, and I could not have them.

But, the truth is that I did have them. Each and every one of those foods -- with the normal amount of wheat flour that regular people ingested during the course of their meal -- several times each over the next few months. The reasons were two-fold. The first was because I was having doubts. Yes, they found that I had eosinophilic esophagitis, and that the most likely cause was a food allergy, which I had discovered was most likely due to wheat. But was it really wheat? They didn't do any skin allergy tests on me, so how could they really know? The second reason, which built off the first, and because I can never leave well enough alone, was that I had decided to test myself over and over to see if there were limits to my "supposed" allergy. And so I did something that I never should have done: because I can never leave well enough alone, I allowed myself cheat days.

It was once a week at first. I would pick someplace for lunch where none of my co-workers were going to be or a place where the staff of the restaurant weren't aware that I was supposed to be wheat free, and I would eat something that I was seriously craving. Sometimes it was just a crappy burger or a breakfast burrito from a fast food joint; sometimes it was a banh mi sandwich from my favorite Vietnamese restaurant. There were a couple of times where I would sneak a piece of cold pizza from the company fridge early in the morning when I was the only one there, even though I had left myself purposefully out of the free pizza party the day before. 

And because I wanted that submarine sandwich with the French bread, I went an extra step in hiding my activity. The mom-and-pop sandwich shop across the street already knew about my allergy, and the owner was very helpful in alerting me to any amounts of wheat in their various soups and other specialties. Not only would they happily lettuce-wrap any sandwiches or burgers for me, but even allowed me to bring in my own GF bread on a few occasions, which they would keep for me for my next visit. So I couldn't get a regular sandwich there. But the Subway chain around the corner and down the street a bit didn't know me at all, and I would only go there at times when I knew most of my co-workers that frequented it would not have lunch breaks. I almost got caught twice by friends from the office, but both times I was able to tell them that Subway was willing to lettuce-wrap a sandwich for me. (They weren't; at least, not at the time. I don't know about now.)

The results of all this cheating on my science-determined diet and on all of my friends, co-workers, and my significant other? Well, it varied. When it was once a week, I had very little immediate reaction, if any. Some light coughing usually, and some minor facial numbness or a small headache. By that evening or the next morning, sticking to my usual restrictions, I was fine. It was when it went from once a week to a more frequent pace that I really started having problems and discovering my limits. Once, on the third straight day of a food cheating lunch week, I had a truly tasty chicken burrito after I got off work, and half an hour later had another of my projectile vomiting episodes on a sidewalk (and very nearly on the bus on my way to that sidewalk). Discovering that single episodes of diet cheating had little or no effect, but continuing it from meal to meal or even day to day made me feel worse, and at the top level, started that insane cough up again. So, I was careful. Prolonged bouts of coughing always made Jen and my team at work wonder if I had gone off my diet, and so I had to avoid it at all costs if I still wanted to occasionally enjoy things the way that I had for my entire life. I would also have several weeks in a row where I didn't cheat on my diet at all, and then would have renewed confidence that I can handle things fine as long as I kept everything "low and slow," as Mel Brooks put it. This, too, is an attitude that is a big mistake.

The act of cheating on my wheat free diet was like any other addiction. To do so would be deleterious to my health, but I just couldn't help meeting those impulses with immediate action. The problem, as I assessed it then, was that while keeping to my diet made me feel so much better mentally and physically, I chose to see the only "reward" as getting to eat food ingredients, no matter how well prepared, that didn't taste nearly as good as the ones that were taken away from me. And that was no reward at all in a mind that was blinded by bread madness. It was the ol' "angel and devil on the shoulder" stock scenario from movies and cartoons, and for at least one day a week, and eventually more, I chose the shoulder on which the devil was perched (even if I don't believe in devils).

It was around the first year of all this that I hit the skids mentally, owing to my lifelong depression building to a dangerous level, to factors outside of the diet concerns. A big part of how I handle depression is in stress eating, and with the stress eating came more examples of my sneaking wheat-embedded foods whenever I could, just because it was easier and I didn't have to think about it when I ordered. I didn't want the added pressure of having to negotiate a menu, and so I went for it. The food cheating went to three, sometimes four times a week. I never did do a full week of it, as I can recall, and sometimes I would be calm enough to order things in the way that I should. But mostly I just started pounding wheat-laced food whenever and wherever without any thought of the consequences.

The real culprit here is me. I was just plain weak-willed. I was weak-willed in many other aspects of my life, but especially in regards to maintaining my wheat free existence. I had started to see a therapist about a year after the depression kicked in full force in nearly life extinguishing ways. While we very rarely discussed my allergies (he knew none of what I am spilling out on this page), he was exceedingly helpful in getting my head on straight again and slowly building my self-confidence. It allowed me to get things off my chest when I needed to remove them, not waiting months and years to do so. It was wonderfully enlightening, and while the course came with antidepressants that altered my mood for about a year and a half, I was able to get some of my focus back. Within this period, I finally did away with my need for cheat days, and started to settle into my wheat free diet for good... mostly.

I say "mostly," because I still cheated on occasion. This time, it was more like a once a month thing, when the time was right, and I just needed a break from all of the damn restrictions on my life! I had determined, with near certainty, that the cough and the other hardcore effects of ingesting wheat flour was based on their building up in my system. The more frequently I went back, the worse I would feel. But giving myself that release once a month really didn't bring anything up other than a few coughs or the other smaller symptoms. I justified it by thinking that if I was good for the next month, I could then have another single cheat day, with a wide enough break that there would be no real build-up. And so it went, month to month. Eventually, I forgot about having cheat days at all. I slowly worked them out of my system, hopefully for good.

Then, a little less than a year ago, I lost my job. And then, two months later, we moved from Anaheim to a new home in Riverside County. While I was out of work, I still managed to not allow the stress to get to me in such a way that it reignited my need to destroy either myself, or, on a secondary level of concern, my diet. There was just one major problem: something was causing me to have another severe coughing bout. Many, many coughing bouts, actually, but all connected together where for several weeks and then on to well over a month, I could not stop coughing and hacking. This eventually led to my having attacks of full-on vomiting or long sessions of dry heaving. On top of this, it was taking more and more effort for me just to get up the stairs or even walk a short distance. Yes, I had been putting on more weight, so that could explain most things. But the endless coughing? I was sticking absolutely rigidly to my wheat free diet by then. What gives?

Well, what gave was that we had just moved from out of the city and into the suburbs, And those suburbs were right next to two things that may have been causing my system to go haywire. One: huge, grassy pastures full of cows, which I could pass just walking a quarter mile down the street, and which caused us to coin the adjective "cowy" to describe the air's suitability when opening the windows of our house on any given evening. "Too cowy" or "not too cowy" have became the language we speak daily now. Two: large amounts of construction work going on quite near us (more suburbs being attached at a crazy rate to the suburbs we are already in) and not much further from us (giant mall areas and roads being developed in a couple directions from us). Caught in former farm country undergoing constant development, it was possible that the dust and the grass and the air were riling up further allergies that I had not yet discovered.

And so I went back to my doctor, mostly so Jen would be able to finally get some sleep. I had been so good with my diet that it couldn't have been a factor this time. The doc decided to treat me for exercise-induced asthma, and then had me go and see an allergist. The allergist treated me even more for asthma, and then had me jump to yet another clinic to not only take a series of breathing tests with an extremely annoying (though dedicated) technician/cheerleader, but also meet with another allergist who had me undergo skin tests. 


Stabbing my back with 45 different pinpricks (actually, the process was very gentle; "stabbing" is quite out of bounds), they discovered that not only was I allergic to wheat, but there also to a great many other things as well. I am allergic to rye, which is connected to wheat in a true gluten-free diet, but I was not allergic to barley, which is the last member of that trio. Fish and shellfish? I told you they would show up again, and yes, I probably made a mistake in not trying them out in my elimination diet, because if I had eaten them in the next couple of years leading to this point, I may have had problems with them as well. Allergic to both, though the fish is actually "codfish," which they told me could also include salmon, so I am happily away from that underwhelming dish for the rest of my life. In total, of the 45 items they tested on me, I showed some form of allergic reaction to just over 20 of them, quite nearly half. Apart from the four food groups, the rest are mostly trees, grasses, and shrubs, and one of them is a form of mold. 

Any or all of these could have been a factor in this latest assault on my body. After adding a HEPA filter machine to the bedroom, treating my asthma properly, getting on allergy medication, I was already much better after a couple of weeks. The coughing and hacking subsided totally. The best part was the confirmation of wheat (and now rye as well) as being one of my allergies, which finally allowed me to let go of the "what if?" scenario that had been running through my head for a couple of years. Keeping such a scenario in mind was what led me into maintaining those old allergy cheat days, but now I knew for certain that I could no longer afford to have days like that. It did make me wonder why my doctors didn't have skin tests done right after I had completed the elimination diet, just to confirm what I may have found. I didn't know enough back then to ask the right questions, and so they sent me out the door to my fate.

It is now about six months later. I have kept to my wheat free diet in that time and have had no problems at all. In relation to my previous symptoms, that is. I have been wrestling with my weight problem, and back in September, when my GP raised the issue after I hit an all-time high of 276 pounds, I decided to tackle that issue next. A lifelong Dr. Pepper fanatic, I finally had to get it out of my life on a regular basis. After six days of not drinking soda and having severe headaches, I broke through my nasty addiction to caffeine. For the next two and a half weeks, I stopped drinking all soda and fruit juices cold turkey. I only drank Trader Joe's Lime Sparkling Water (with zero sugar) and regular bottled water. I also cut out salty snacks of any kind, including my beloved potato chips. Keeping to the 1800 calorie a day limit my doctor imposed on me, I lost twelve pounds in the first week. (I was having about a half dozen sodas a day at that point. That is 900 calories right there by itself, before we even get to food.) Building in the ability to not totally deprive myself of fun, having learned from my wheat free experience, I allowed myself Dr. Pepper when we went out to eat for lunch or dinner. I found out almost immediately that after not having it for about three weeks, it was entirely too sweet for me anymore, to the point where I couldn't even finish a single glass. No worries about refills! I also allowed myself a small Icee at the movies, but usually just got a bottle of water. When we went to Disneyland on a couple of days in this span, I stuck to water instead of sharing a Coke with Jen, our usual pattern.

I got my weight down pretty quickly to 250, but then the holidays hit, and you know how things go there. Allowing myself sodas in the house and having the usual type of fattening holiday fare, my weight went straight up to the 270s again. Seeing my doctor a few weeks ago, after finding from my test results that I do not have diabetes ("Yet..." she sternly reminded me, my father having the disease) and am doing pretty well otherwise (even having my lowest cholesterol, in the safe zone, in my life), she said that we really need to tackle the weight issue. A call for increased exercise activity was in order, in addition to maintaining my calorie limits and my wheat free diet. She also placed me on a low level appetite suppressant, which has actually worked rather well. She told me that it might cause some anxiety, and I said, "Me? Do I need more anxiety?!" But in fact, it has allowed me to focus more on the work at hand, and much less on food. I don't feel hunger pangs at all anymore, and sometimes have to remind myself to eat before the end of the day.

If there is an upside to the other illnesses and problems that I have run into over the past year, it is that I really don't make too much fuss about dealing with living wheat free anymore. I have become practiced in dealing with restaurants, especially when the owners or staff are asses about my "trendy" diet, and have learned to ask the right questions to get the best information possible. I am also now able to cut through the B.S. of most product packaging in finding gluten or wheat free foods where such designations are actually a necessity and not just a marketing term. 

Despite the increasing prevalence of allergy free foods in our supermarkets and restaurants -- and yes, it is one of the positives in the perceived trendiness of food allergies -- it is still pretty much the Wild West out there in terms of quality. Finding a gluten free loaf of bread actually worthy of the term "bread" isn't easy, and I have a great many loaves to go before I can close the door on the subject (though I have finally found a brand that I can say that I truly love). The same goes for the different varieties of bread or crusts. And then getting restaurants to break through the allergy barrier and start catering to customers of all types equally is another fight that needs detailing.

And that is the purpose of this new blog, Intelli-Allergentsia. I will be concentrating mainly on the needs brought about by my own food allergies, and through those needs, post reviews of the latest gluten-free food products. I will also include reviews of restaurants approached from the viewpoint of one who cannot partake of most of the items on their menus, and how each one handles dealing with someone with dietary limitations. In time, I hope to include interviews with other allergy sufferers, restaurant owners, and food companies, focused on the topic of food allergies and meeting the needs of the consumers that are afflicted by them. I am also toying with the idea of having my friends with similar concerns put together their own allergy stories for this website or to allow them to rant at length about issues in the allergy free food world they would like to have addressed. 

I am still working out the particulars of the extent of Intelli-Allergentsia, but the main thing is that I have committed my story to be seen online. I have confessed my sins, and I feel cleaner for it, though I am sure the missus is going to give me hell when she reads this third and final part. I am also very open to discussion on this topic, and if you have made it to the end of this piece and would like to comment sincerely or ask questions, please feel free to do so. You may also suggest reviews of products or restaurants that you would like to see, and I will see about adding them to my list. In all, I would hope to start some serious discussion about food allergy issues, and I hope that you will join me in the future on this website. You can also follow me on Twitter @TheCinema4Pylon for updates on new articles or to talk to me by message.

RTJ

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