If you have allergies, many parts of this story will probably be familiar to you. I’m writing it down just to get it out there, and in case it’s helpful for people to read what someone else has been through. It’s an incredibly long story, so I wouldn’t bother reading if you are in a rush.
Before 2006: A Sickly Child and Sickly Adult
I was a colicky child, and sick a lot. When I started kindergarten and started eating school lunches, I suddenly got VERY sick. Constant ear infections, scarlet fever, several cases of “chicken pox” that were later determined to be hives, upper respiratory infections, mysterious “heat rashes,” constant tummy upset. Pretty obvious allergy kid signs when you know what to look for.
Through my childhood and even young adulthood, I spent more time sick than well. I was constantly missing school due to illness. Teachers and classmates assumed I was faking it, and said so often. At a certain point I *was* sort of faking it because going back after missing so much made me anxious, and having teachers and classmates give me crap about it on top of that was worse still.
Around age 10 or 11, I was diagnosed with environmental allergies and my allergist started me on Benadryl and inhalers. I had several courses of steroids for upper respiratory infections that exacerbated asthma. Between the drugs (prednisone commonly affects mood and Benadryl has always caused me personally to become emotionally unstable/moody) and the allergic reactions (which I now know have an affect on my emotions as well), I became what I suspect was clinically depressed at age 12 and began *actually* faking sick from school.
Allergists tested me for food allergies but I reacted to so many foods that the best they were able to do is put me on a rotation diet. None of that really seemed to help, and eventually I became a teenager and just ate whatever I wanted.
Through my young adult years I pretty much constantly just did not feel well. I had respiratory infections and sinus infections often, and also suffered from a lot of aches, pains, and mysterious rashes. I continued to take medications that affected my moods, and became an angry, withdrawn teenager. I made the awesome decision to start smoking cigarettes in my teens, which helped the situation not at all.
When, at age 18, I moved out of my childhood home I was much, much healthier, but still just not a very well person. Colds usually turned into infections that had to be treated with antibiotics, and those infections usually exacerbated asthma and I would get to where I couldn’t take a full breath without wheezing and a rattle in my lungs. I often ended up on the bed in the downward-facing dog yoga pose, trying to position myself so that I could get air into my lungs. I’d spend several nights being afraid to go to sleep because I couldn’t breathe, and then finally go to a walk-in clinic and pay on credit to get a nebulizer treatment and a course of antibiotics.
Because of that, anytime I had the tiniest sniffle,I would get very scared and talk about being concerned about getting another respiratory infection. My healthy acquaintances thought this was crazy and that I was just a complainer, and I got something of a reputation as a hypochondriac. They never saw me when I couldn’t get a breath of air though, because I stayed home when I got that bad.
I also just generally was in pain often. Sometime in about 1998, I mentioned to a housemate that I was really surprised I hadn’t had a lot of pain that day. He was confused, and asked me what I meant. His question confused *me*. “You know, pain. Like your knees aching and feeling like they’re on fire, back spasms, neck stiffness, all your joints cracking?” The housemate looked at me flabbergasted and explained that except for the occasional headache, or an actual injury, he went through most days of his life without feeling any pain at all. Oh.
In addition to the daily joint pain, I also just generally had a weak body (this becomes relevant later in 2016): I would get much more hurt from small trauma like low-speed car collisions than most other people, and frequently sustained sports injuries from normal, non-sporting activities. For example, I sustained a rotator cuff injury in 1997 from parallel parking my car daily for a few months. I still have a calcium deposit in that shoulder and have chronic pain.
A year or so after I’d graduated college, in my first “big girl” IT job, I mentioned to my boss that I just felt more sick, tired, run down, and in pain than other people. I didn’t have any proof, but I just really felt like other people were able to do more, and had more energy than I did. That boss suggested that I might have food allergies or intolerances, and actually specifically suggested that I look at gluten as an inflammatory factor in my diet.
I went to an allergist first. They did a big huge scratch test for environmental allergens, but only for a few foods. They had a standard panel they did for foods and then I was allowed to pick some extras I was interested in. I don’t really recall whether testing for corn was a standard on their test or whether I chose corn, but I didn’t at the time think that corn might be an allergy to me.
The scratch test was strongly positive for dairy and medium for soy, and just swelled up the tiniest bit for corn. She almost didn’t write it down as a positive. The allergist spent a goodly amount of time telling me how to avoid dairy, and a small amount of time on soy, and then waved her hand at corn and said I should probably avoid that too, no big deal, and sent me on my way.
Little did I know.
I did an elimination diet on my own after that point. I don’t really recall the details anymore but I think I just ate lentils, rice, and a few veggies, like broccoli and carrots or something, plus olive oil and whatever spices I felt like for 3 weeks, then challenged the top 8, plus corn and gluten.
The gluten introduction was pretty gross. I’ll spare you the details and just say that it was very obvious I had at *least* an intolerance to it and it was best avoided. Introducing dairy and soy really didn’t seem to affect me much, though I decided to avoid them anyway. The introduction of corn? Holy crap.
First, this is NOT the way you introduce a food you suspect you are allergic to: I ate an ENTIRE BOWL of canned corn. NEVER DO THAT. I am lucky I did not go into anaphylactic shock. The reaction was instant and obvious. First I got dizzy. Very dizzy. It was like I had nitrous at the dentist- I got the wah-wah’s and the room was spinning. Then I had an asthma attack, within 10 minutes. That was easily controlled with my inhaler, but it happened, and I hadn’t had one since I started the elimination diet. Then, within about 20 minutes to an hour, my joints were on FIRE. My whole body hurt, my knees ached, and it felt like I was being stabbed in the shins, knees, and wrists. I laid on the couch just in agony for the rest of the night. The following day I felt somewhat better, but noticed that I felt run down, sore, and emotionally… delicate.. for days after.
Okay, so no more eating corn. Simple, right?
Yeah, not simple. The next several years I spent learning the hard way about just how many things corn was in.
At first I just focused on gluten, thinking that corn should be easy. And, I’ll admit it, I “cheated” on gluten more than a few times in the early days. The day I decided I wanted a burrito in a flour tortilla, though, was the day I quit cheating. Many flour tortillas have corn starch as an ingredient, which I didn’t realize, and many sour creams do as well. Between those two things, I was in agony on the couch all night alternately hitting my inhaler and wishing I could have my aching limbs amputated.
Then the next day I felt like I had been hit by a truck, physically *and* emotionally. Everything just felt… bad. Despair is the only way to describe it. I had always just thought I was a moody person, prone to “random” bouts of self-loathing and rage, and realized that I really didn’t feel this way very often when I wasn’t eating foods with corn in them. It took me about a week to recover after that and feel like a human being again. I stopped wanting to “cheat” after that point.
2006-2010: Regaining Health
During this time, label-reading was enough, and I didn’t need to be concerned about cross contamination. I needed to avoid corn-anything, any kind of “starch”, as well corn sugars such as dextrose or maltodextrin. I think I did get more sensitive over time. It was probably 1-2 years in to avoiding corn that I found that caramel color and vanilla flavoring were also bad news, and when I started reacting with asthma as well as the dizzy feeling and joint pains.
Even at this time, though, I could tolerate citric acid and xanthan gum, which were listed on the “corn allergen” lists as usually being from corn. I also had to avoid alcohols from corn, including triple-distilled food-grade alcohols such as those used in pure flavoring extracts. So no bourbon for me, only the top shelf Irish Whiskey, which didn’t feel like a hardship.
Life wasn’t easy. I got corned a lot as I was learning, and I had to really change how I made plans: I couldn’t just jump in a car or on a plane and go, I had to consider what I was going to eat, where, and when and pack accordingly. I got good at it though. Life was still possible, it just took more planning than before.
The trade-off for these extra efforts was that I felt AMAZING. I had more energy than I’d had in a long time, was more clear-headed, and had less pain. I hardly ever needed the knee braces I had to wear when doing more than a few blocks of walking in a week, and actually lost them because I needed them so rarely. I slept well and for reasonable amounts of time, was able to organized and analyze information, had very few outbursts of irrational rage or bouts of despair with no logical explanation, and got sick way less often than previously.
2010-2012: Building Inflammation
In 2010 I took a stressful job for a large corporation in Seattle and moved houses. During the first year of my new job, I experienced a lot of fatigue which I attributed to stress, and had much more hay fever and GI distress than I was accustomed to. Both I attributed to the new area and stress.
There was a pretty interesting incident during this time. I was on a trip down to Oakland and staying in my friend’s punk house. It was sort of an allergenic/inflammation-inducing weekend: lots of alcohol, cigarettes (because I was still a smoker), wood smoke, dogs, and dust, and very, very little sleep. For dinner I went to Whole Foods and got a food I hadn’t tried before but looked okay. Xanthan gum was on the ingredients list, but I’d tolerated xanthan gum many times before. I ate it, and then went to sleep under a wool blanket. (I’m allergic to wool.)
During the night I dreamed that my upper lip was uncomfortably swollen. I woke up at about 6am thinking to myself what a weird dream I’d had. Then I touched my upper lip and it was actually hugely swollen. I’d never experienced anything like this before, but I’d been living with an allergy for a while, and I recalled that this was the kind of thing you are supposed to go to the hospital for. So I took 2 Benadryl (which I always had with me), took a breath or two, realized I was breathing fine, took some pictures for Facebook, and *then* arranged a taxi to the nearest ER.
By the way, if you have a food allergy, and have a visible allergic reaction, I highly suggest that you take pictures as well. I was just being goofy, but actually having that documentation has been useful several times.
There wasn’t really much they did for me at the ER, but it was pretty funny to have an intake nurse look at my face and take a step back and say, “WOAH!” I figured they’d seen it all there, but apparently my Duck Lips were pretty impressive. I heard them referring to me in the halls as the Lady with the Lips. Ha!
They gave me an IV and I fortunately knew enough at the time to make sure that it was saline only (it was), and then gave me intravenous diphenyhdramine (Benadryl) and ranitidine (Zantac, which is a histamine blocker but works on a different receptor than benadryl). I did NOT know enough at the time to ask them to make sure that both of those were only the medication, without any inactive ingredients that might contain corn. Fortunately for me they were the pure medication.
They kept me for observation for something like 2-4 hours, and sent me home saying to come back if the swelling got worse instead of better. The swelling never went past my lips to my tongue or throat, and resolved itself mostly within about 12 hours. So I got to spend the rest of the evening at a house in Oakland, hanging out with strangers who had never met me before. With Duck Lips. It was pretty spectacular.
In retrospect I realize that the reaction was probably a combination of all the punishment I was giving my body, the wool blanket, and then the xanthan gum in my food was an extra push over the edge into reaction-land. (This is a reference to what is called the “bucket” theory of allergies.) At the time, and for a good year or two after, it was just a total mystery, and I was sort of constantly afraid it was going to happen again.
2012 – A switch flipped on my immune system
In July of 2012, I went to see Iron Maiden for my very first time. Don’t ask me how I made it to age 34 as a metalhead and hadn’t seen them before, but that’s how it was. We were to meet up with a bunch of friends and carpool to the White River Amphitheater together, both to reduce the difficulty of parking, and also to tailgate before the show. It was going to be a long day so I made sure to pack myself food for the road- wrap sandwiches from Trader Joe’s Rice Tortillas (contain xanthan gum from corn), with trader joe’s brand cream cheese (made with corny rennet, and probably cross contaminated with corn), mustard that was made with white vinegar from corn, and Natural Choice turkey slices, made from turkey that has been highly processed and treated with corn-based antimicrobial agents. Every single one of these ingredients makes me cringe now, knowing what I do about where corn hides in foods. But at the time, I thought it was safe, and had eaten these foods many times before without issue.
On our way down to the concert, I took a few bites of my wrap sandwich, and the tip of my tongue started to burn and hurt like I’d bitten it, except I hadn’t. I got pretty concerned and I didn’t have any Benadryl with me, just some generic Zyrtec (contains corn products) or something. I also didn’t have my EpiPen. I took those, and stopped eating the sandwich. I did feel like I was having a little trouble swallowing, just on one side of my throat, but fortunately my symptoms got better, not worse over time. We did stop off at my house, which was fortunately on the way, and I grabbed my (expired!) EpiPen, but I didn’t end up using it.
Over the next little while I tried to figure out (ha) why I suddenly couldn’t eat these foods anymore. I posted to the Delphi Forums and probably made the regulars there simultaneously laugh and facepalm by listing what I’d eaten and asking if there could be cross contamination in the Trader Joe’s facilities, like if they were processing their corn tortillas on the same lines as the rice tortillas. Someone gently told me that I probably didn’t need to be looking for cross contamination when there were actual corn ingredients in pretty much *every* food item I’d listed.
I spent the next several weeks reacting constantly. Everything I ate that used to be safe wasn’t anymore. I ended up using my EpiPen 3 times in 3 weeks. I spent probably thousands of dollars replacing my entire pantry including having to give away specialty gluten-free staples I had recently ordered by the case from Amazon that I thought were corn free since they had no corn ingredients.
Obviously, corn products that I’d tolerated before like citric acid, xanthan gum, and sorbitol were off the table. Additionally I now had to worry about sprays and waxes on produce, disinfectant washes used in processing and packaging meats, and more. Seemingly impossibly tiny traces were now an issue where they hadn’t been before.
During this time, as I was reading on forums and web sites about the kinds of things people with highly sensitive corn allergies had to worry about (sanitizer on dishes in a restaurant?!) I was disbelieving. I supposed that *they* might need to worry about this crap, but *I* would never have to. And every time I said that about something, within weeks I’d begin to have to worry about it. Organic, grass-fed meat (rinsed with corn-based antimicrobials after slaughter), dairy (fortified with corny vitamins and put into bottles sanitized with corny solutions), tropical fruit (ripened with ethylene gas), whole organic fruits and vegetables (sprayed or rinsed with corny pesticides or organic corn-based antimicrobials)- all of it was setting me off, and it was all corn. I even started reacting to the tap water at my work, and every bottled water I tried as well.
It didn’t seem possible for it to all be corn, but for pretty much every item I reacted to, I’d be able to eat another version of that food that was made or grown in the non-corny fashion.
I didn’t *quite* become a shut-in. I still made it out to shows occasionally, but everything was just harder. I couldn’t even drink from glasses in bars and restaurants, let alone eat any of the food or beverages served there, so I generally just tipped the bartender and drink water from a bottle in my purse. Depressing, but well, that’s just how it had to be.
2013: Problem Solving and Setbacks
We moved to a bigger house to accommodate my kitchen and storage needs. Little did I know that house had a leak in the siding that was funneling water under the vinyl flooring in the daylight basement,where mold was festering. Around midwinter I had a huge reaction to eating beets, and then it seemed like after that I was reacting to literally everything I ate. I suddenly couldn’t tolerate a ton of vegetables, and it was all the winter vegetables: kale, broccoli, carrots, chard, cabbage, sweet potatoes. Basically everything that was possible to get fresh from the farmers’ market was setting me off. I thought it was corn, but I went directly out to a farm that I *know* uses safe-for-me practice and they pulled chard and kale right from the ground for me. I still reacted, because I am just allergic to those vegetables.
The only two foods I was able to tolerate at that time were eggs and pears. The eggs were local organic eggs. Corn fed, but fortunately I didn’t need to care about that. Many corn allergics do. The pears were local and unwaxed, but actually conventionally grown. And that is what I ate for most of the winter. For a couple of weeks I had chicken and chicken broth, but around mid January I ran out of the non-corn-fed chickens I had bought from a farmer over the summer and couldn’t tolerate any grocery store chicken as I unfortunately can’t tolerate corn fed meat. So it was back to eggs and pears. No spices other than sea salt, no cooking oils. Just eggs and pears.
There was a point during the winter when I was even reacting to the eggs and the pears. I just had to eat a couple of bites when I was really hungry and then wait for the reaction (throat swelling) to subside before I ate more.
Don’t ask me how I held a job as a programmer down during this time. Not very well, but somehow I didn’t get fired. Around this time I visited the chief of allergy and immunology at a prominent local hospital for help. She looked at me, read through the health timeline I had very carefully typed out to share with her, posited mastocytosis, and asked me to come back in 3 weeks. I continued eating two foods for 3 weeks and didn’t pursue any other kind of care while I waited for the follow-up with her.
When I came back in, she did not run any tests for mastocytosis. She said she’d looked up corn allergies on Medline and couldn’t find anything, and told me I obviously had *some* kind of allergies that I was undertreating, and recommended that I take an over the counter Claritin daily. (I did end up trying a daily antihistamine, and it did NOT help, at least not to the degree that she expected.) She then shook my hand and wished me luck. I took that as a dismissal, and left. I should have been livid but I was just too sick and tired to feel much. I just went home and made plans to call a holistic type MD who would bill insurance and browbeat them into writing the prescriptions I thought I needed. ( Fortunately I did end up finding a very nice MD whom I do not have to browbeat at all. )
One day I was suddenly able to eat more foods than the previous day. I looked at the hygrometer that I had in the living room and realized that the humidity was down to below 50% for once. And then I realized: I was so sick because of the MOLD in my basement.
Now, in many states if you have mold in your house, the landlord is required to remediate it. Not so in Washington state. It rains like 10 months out of the year here. Mold is just a fact of life. Unless the mold is a toxic strain such as stachybotrys, mold is not considered a “defective condition” that a landlord is legally required to repair. I could most certainly *ask* my landlord to protect his investment by repairing it, but if he didn’t want to, my best option was going to be to get my doctor to write a note verifying my mold allergy and try to get out of the lease without penalty.
I talked with the property manager about the issue and she sent a dude over to look at it. I didn’t think the dude was going to actually help me, I figured he was there to absolve the property management and the landlord of liability, so I had my own inspector in as well. Well, it turned out that actually the owner of my home wanted to fix the situation. It was good that I had my own inspector in, I think, but actually my property management really did take care of the problem. They fixed the drainage issue, sealed the cement flooring in the basement, and replaced the moldy vinyl floor and moldy wall panels. And actually? The mold was really all gone!
By March I was feeling much better and was able to add lettuce and apples back in to my diet. The lettuce was just the california organic stuff from the grocery store and probably sprayed with some kinds of antifungals or organic pesticides. I think I reacted ever so slightly to it but I was starting to get worried about malnutrition and my hair falling out, and I really just needed some Vitamin K and folate, and lettuce had it. So I ate it anyway.
That’s about how my March through May went. Around May I was able to add in a few more foods, until I had 11 or so, and was steadily able to add more as the growing season ramped up and the spring and summer fruits and veggies became available.
2014-2015: Achieving a New Normal
Over the next couple of years, I was able to add a lot of foods back. Many of the foods I lost, I was still allergic to, but some others I just needed to find grown in an uncontaminated (usually this means unsprayed) way. I also got really organized about bulk-buying safe foods while they were available and freezing or dehydrating them for later consumption. By doing this, I have been able to keep a larger variety of foods in my diet throughout the year.
The absolute most important thing that has kept me fed, though, has been resourcefulness and opportunism. Most of my newer food additions have been because I am relentless in pursuing options including mail ordering food from other parts of the country, or directly talking to local or far-off farmers that grow one kind of crop I can eat and asking them to consider growing things that I have a hard time finding safe. Essentially, I’m doing the kind of networking people do for work, but I’m doing it so that I can eat food. And then as much as possible trying to share those resources forward so that others in my position can benefit from the work I’ve done. That sounds generous, but it’s really how I make myself feel like the struggle has a purpose instead of just being a grind.
Things during this period were not easy, but I was able to establish a routine, and I felt confident that I COULD survive if I just put in the effort.
The main lesson from this period was: Life, including your allergic reactions, can change suddenly and without warning. Be prepared and take nothing for granted.
2015-Current: Accruing Diagnoses
Once I had a routine sort of established, it was time to get some answers and try to solve some of my most mysterious/life-arresting problems. One of the strangest problems that I still have not been able to solve, is my severe reactions to drinking *water*. Now, water can absolutely be a problem for a corn allergy. Minerals in a corn-based carrier can be added in, plastic bottles can be made from corn-based polymers. Water treatment chemicals can contain corn. Plastic filter housing can be impregnated with corn-based antimicrobials. [Note 8/12/2016: References are needed here, I know, and *are coming*.]
However my water problems do not match any of the water problems that other corn allergics have. Of all things, the only water I can drink without having swelling of my pharynx and tongue and flu-like symptoms and sometimes a rash or asthma, is my CITY WATER from a specific water district in South Seattle. Not any other water district. Further, that water has to come through metal pipes older than at least 10 years (not sure of the exact age requirement) and must also not pass through faucet hardware any newer than 10 years. The water can be stored in some kinds of HDPE plastic, but not others, and some 304 stainless containers, but not others. Any Polypropylene or LDPE plastic = bad, although some kinds are worse than others. Some borosilicate glass is a problem, but pyrex or “regular” glass like mason jars, is fine.
My best guess is that with the plastics it’s what the plastics themselves are made of and maybe dyes or clarifying agents. With stainless and glass, I think it’s not the material itself but rather some kind of industrial coating like what is put on the mold during the casting process in the factory to keep the item from sticking to it. There are almost certainly ways to test and narrow this down but I lack the equipment, time, or money to do so.
Between this issue, and my 30+ other allergies, it is clear there is some other kind of underlying immune condition. So I’ve begun pursing diagnoses, and have gotten a few and am working on others.As of the time of writing (August 2016), I have a diagnosis for Ehlers-Danlos Syndrome (Hypermobility/type 3), which is a genetic connective tissue disorder that for some reason is commonlycomorbid with severe/multiple allergies. I also have a provisional diagnosis for Dysautonomia (pending an eval from a neurologist), specifically most likely Hyperadrenergic POTS (summary description and more dense journal article with clinical criteria.) I strongly suspect a form of Mast Cell Activation Disorder, but am still working on diagnosis for this. The clinical geneticist that diagnosed the H-EDS is also checking for a mitochondrial disease.
The EDS and HyperPOTS diagnoses put names to a lot of symptoms I’ve had on and off for my whole life that I previously described as just “being tired”, “feeling fatigued”, “having bad knees”, “having pain” or “being fragile.” I also just recently put together that BOTH sets of symptoms are very, very much tied to inflammation, and especially allergic inflammation.
So, I have a way to eat, and I have a road to some answers. It’s not much, but there it is.