Allergy History

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. It’s being updated as new events happen. 

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 I continued to take medications that affected my moods, and became an angry, withdrawn teenager.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.

2006: Discovery

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.

angioedemaBy 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 the zyrtec, 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. This didn’t completely remove the mold but it made it much much better. People without mold sensitivities could not detect the mold, and during the dry summer months I had very few to no ill effects from it.

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.

As I added more and more safe direct-from-farm foods to my diet, I began to realize that my previous list of “safes” were not so safe. I can’t eat eggs at all now- I developed first an intolerance reaction to them and then a straight out allergic reaction. I tested 100% corn free eggs and it’s the eggs themselves not the corn feed or corny washes. I cannot eat the pears I ate all winter during the awful 2-food period- they are sprayed and I react mildly now. I haven’t tried grocery store lettuce in a while but suspect it would be similar to the pears- better than anything else I had when I was eating them, but not corn free.

Here is a list of what foods I can and can’t eat.

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 could 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.

I did finally come up with filtration that worked for me and this allowed me to move out of my still-somewhat-moldy house. Here’s everything I know about water. 

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. I have a diagnosis for  Ehlers-Danlos Syndrome (Hypermobility/type 3), which is a genetic connective tissue disorder that for some reason is commonly comorbid with severe/multiple allergies. I am now diagnosed with a Mast Cell Activation Disorder, specifically MCAS.

 

I had a provisional diagnosis for Dysautonomia, specifically most likely Hyperadrenergic POTS (summary description and more dense journal article with clinical criteria.) However it turned out that I was actually having hemolytic anemia caused by a metabolic disorder that causes my red blood cells to explode when I am exposed to the wrong foods or medications. Yes really. I had a hemolytic crisis (bunch of blood was destroyed causing “blood loss” without actually bleeding  from anywhere) and had to receive blood transfusions, which led to the diagnosis of the metabolic disorder, which is g6pd deficiency aka favism.

The EDS and diagnosis put a name 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 these symptoms are very, very much tied to inflammation, and especially allergic inflammation. The G6PD Deficiency diagnosis is rather new (4 months old at the time of writing) but seems to be connecting a lot of previously un-connected dots in combination with the MCAS diagnosis. A lot of my non-corn mast cell triggers are also G6PDD triggers. I think my body somehow attuned to hemolysis triggers as attackers and decided to produce a bunch of extra inflammation in response to them.

Now that I have some diagnoses to me, I have begun assembling a care team of primary and specialist medical practitioners. This is important because my conditions mean that I am more likely than some others to need regular medical treatments and/or hospitalizations, and ALSO mean that I am more likely to be in danger of adverse reactions to these same things. Here are my thoughts about staying safe in the hospital with a corn allergy.  Here is a version of what I use in the Emergency Room to stay safe.

In addition to medical care, I now know that I have this long list of  hemolysis trigger foods to avoid in addition to my known allergy/mast cell degranulation triggers. Since I suspect that long-term exposure to these hemolysis triggers is one thing that helped land me in such a cycle of chronic inflammation, I am hoping that studiously avoiding them may help me heal a little. Since G6PD Deficiency increases my vulnerability to all oxidative stress,  I am working with a naturopath to try to understand how to best support my body so that it can function as well as possible with this deficiency.

14 thoughts on “Allergy History

  1. I want to thank you for your story! I am literally good through the EXACT same thing. I was diagnoses with a severe corn allergy last year at 28 (after being misdiagnosed with Celiac and having my gallbladder removed). I am struggling in the same ways: foods I’ve always eaten are causing me problems, had to quit dying my hair, switch all my beauty products and even today I broke out in hives only to find out it was my deoderant (a brand that I’ve used my whole adult life so I didn’t even look at the ingredients). It’s just helps me to know that I’m not totally alone and other people a struggling too! It’s seriously soooo hard! But thanks for sharing your story!!

    • Hi Jessica! Glad to hear it was helpful for you to read someone else’s story, including their goofy screw-ups. 🙂 The deodorant I used most of my adult life was Tom’s of Maine, and when I switched I didn’t think I was reacting to it.Then the peeling skin and redness in my armpits that I’d also had most of my adult life mysteriously stopped. I didn’t know that wasn’t normal.

    • Hello, is that Olga from CZ with the pear allergy? If so we met on flight from Brno and I would love to hear from you

  2. Hi there, we’ve met on the corn-free Facebook group. I will have to take your mold experience to heart since I know we have some old mold that is re-growing in the bathroom. We’ve just been swamped with other projects and not looking forward to tearing out the bathroom! Have you looked into the GAPS diet? It seems like it would be a good route for someone with so many allergies… healing the leaky gut so that more foods can be tolerated. Our family is going to jump into the diet on Jan 1st. I’m a little apprehensive that I will bail but this is one of the few times that my husband is totall on board with a diet. I’m going to give away any perishables that aren’t on the diet and for things I feel I should save, I’m going to put them in a tub (I’m thinking of sealing it and having hubby see it so he will know if I break the seal… I’m a terrible binger!)

    • Hey Cari. I’ve been grain free for a few years now. When I first got super-reactive, a naturopath recommended I look at GAPS or Paleo, and I did. Then I got sick to the point where I was only eating 2 foods anyway so any *specific* diet was off the table. At this point I follow the “whatever I can eat that doesn’t make my throat close or my digestive system seize up” diet. Which does indeed involve a lot of meat and bone broth, no grains, no starches, and very few legumes, but that’s based on what’s available to me and what I tolerate, not any prescribed set of rules.

      I happen to be a tough case, though. I do think that GAPS can definitely help a lot of people. However since a steady supply meat is such a difficulty for a new corn allergy sufferer, I can’t say that GAPS is do-able for most folks right away. Grain free just makes sense for corn allergies given that it’s nearly impossible for the sensitive to find corn free grains anyway. Most grains grown, threshed, milled, and stored with or near corn, so more sensitive folks won’t be able to tolerate them no matter what diet they’re following.

  3. Thanks so much for sharing your story. It’s SO familiar.

    And re: the mastocytosis that your completely idiotic doctor mentioned – there might be something there you could check out, idiocy aside. NOT mastocytosis, actually, but a mast cell activation disorder (MCAD). Mastocytosis IS a mast cell activation disorder, but doctors are just recognizing now that there are more than just mastocytosis. They just don’t have names for them yet. As my one good doctor said: if there’s more than just a few allergies, that’s usually a sign that there may be an underlying cause.

    A lot of my own history matches yours quite a bit, although my allergic reactions were much milder in terms of anaphylaxis and hives. I can’t have corn, gluten, dairy, or soy either.

    I’ve been seeing more and more MCAD folks who have corn and gluten issues, and while getting diagnosed doesn’t really help ALL that much (there’s no cure, and we all pretty much do what you’re doing, which is figure out what triggers a reaction, avoid as much as you can, and medicate when you can’t), there is one thing that can make a difference: knowledge of what can make you react. Because a person with MCAD can react to any physical, environmental, or emotional stressor.

    So a person with MCAD can have allergic reactions to allergens, like corn or mold, but they can ALSO have allergic reactions to things like chemicals (including chemicals that make up odor), heat or cold, or temperature CHANGES, or friction, or sunlight, or water, or extreme stress or emotional upset, or fatigue. And the mast cells can leak rather than shock, which can cause reactions that are not the hives/anaphylaxis type but rather bone or muscle or joint pain, or constant fatigue, brain fog, anxiety and depression, that sort of thing. Illness can make the triggers worse.

    Just sharing this because if you look up things online, you don’t typically find this information. The doctors are focusing on hives and rashes and anaphylaxis, and don’t really talk much about all the crazy triggers and symptoms that most of us actually HAVE.

    This is the most up to date information on symptoms and diagnosing this, if you’re interested:
    http://www.wjgnet.com/2218-6204/pdf/v3/i1/1.pdf

    There’s also some good groups on Facebook that have very useful files sections and lots of very active people who can answer questions, including good doctors. These two are a couple of nice ones:
    https://www.facebook.com/groups/207077049364043/
    https://www.facebook.com/groups/486532874778463/

    Just…wishing you luck, from someone in a similar boat. Hope that you can continue to improve and find ways to live a full life!

    • Thanks for this information! I was aware that mastocytosis is one of many possible mast cell disorders, but I most definitely was not aware of the variety of degranulation triggers. I think where I’m at right now is that it’s definitely consumed, contact, and airborne, and fatigue and stress are more in the “normal” category (as much as anything about me can be normal) of a bucket-filler, where yeah if I’m tired I can exhibit more sensitivity. But it’s a good reminder to track all variables, not just the ones that you think are possible.

      To get a little philsophical, I really wonder where the line is between a “mast cell activation disorder” and “plain old” multiple allergies? I mean isn’t any allergy sort of an activation disorder? Is this really a useful diagnosis or is it just a circular file for people who are sick and we don’t know why? Anyway I should probably shut up until I’ve read all the links you kindly provided.

      • One thing I’ve found most interesting is the whole ‘bucket’ idea that you’ve mentioned yourself, too. For people with MCAD, they are often having very small reactions – small enough you wouldn’t really notice at all – to things all day long. And as a result, their bucket is much fuller than average, which leaves them vulnerable to more allergic reactions to OTHER things that could be true allergies, say, but might normally not cause much of a reaction. It makes me wonder if numerous severe allergies might be found out to be connected to a mast cell activation disorder, myself.

        When it comes to allergies vs. MCAD, I know of a couple of differences.
        1) With allergies, the IgE triggers the mast cells, yeah? So it’s more that IgE is behaving badly, and it induces the mast cells to behave badly. Which I would think yeah, means that’s kind of an activation disorder.

        With MCAD, though, IgE does not trigger the mast cells trigger to degranulate (although a person with MCAD can have IgE mediated allergies, too). So in this case, the IgE is behaving properly, but the mast cells themselves are misbehaving. Maybe…doctors don’t actually know for sure WHY mast cells in MCAD degranulate. So maybe it’s the mast cells themselves being wacky, or maybe there is something else we don’t even know about yet that can trigger them like IgE does.

        Officially, anaphylaxis with MCAD would actually be called an ‘anaphylactoid’ reaction because of the lack of IgE elevation, as I understand it.

        At this point, I think of MCAD as a partial-catch-all diagnosis. It’s more precise than, say, IBS. It’s more like the next step past things like idiopathic urticaria. Like, if doctors looked at IBS and could say: this group of people with IBS have cells that act in Y manner to produce the symptoms of IBS.

        With MCAD the doctors know the symptoms, and they know that certain cells are acting in certain manners to cause it. But at the same time, they still don’t know WHY the cells are acting in this manner, and they have done enough studies to realize that not everyone’s cells are acting in the same ‘bad’ way, but they’re not sure if that’s within normal variation patterns, or if it indicates there could be numerous disorders, instead.

        And they can’t DO much about it. The main reason I’d ever look for a diagnosis is if you are worried about ER experiences or a major medical procedure, because people with MCAD can have atypical reactions, and tests for how well you are doing – allergy-wise – may be inaccurate due to how MCAD folks’ mast cells degranulate.

        The best advice I’ve gotten came from other people with this, and it’s mostly avoidance, which you already have a great handle on from the corn and everything. Mast cell stabilizing medications have been very useful for some people with this, but as you already are quite aware, getting this without corn is a huge pain in the butt, even if it’s possible.

        There’s been help for me with other things, as well, but that’s for my own personal triggers and doesn’t always apply to everyone else. Like, I don’t like cooking (I’m another reluctant hippie), and doing a trigger journal I realized that every time I cook, I get a very mild headache. Finally tracked it down and realized that if I get a burst of heat in the face, like from something on the stove top or opening the oven, I have a mild reaction. Took me five years before I figured that out, because it was so mild. But it’s been helpful to know because following a day when I’ve HAD a bad reaction, avoiding small triggers like this has helped me recover SO much faster.

        So for me personally, it’s been worth it, but only because knowing I had it, I finally started doing research on it. I was already avoiding tons of foods, and scents, and living pretty much like I do now, before I knew what was going on. I still don’t take any medication because I react to that quite a bit. But the research has helped me figure out more triggers, and how to make my bad days ‘less’ bad and how to recover faster. That’s been huge.

        So…maybe I’d say it’s worth researching, but maybe not worth getting diagnosed. ^_^

      • Ah, when you put it that way the distinction makes sense. It sounds like I should get my IgE levels checked among other things. I do have a practitioner who is probably down to try to explore this with me. I’ve been avoiding her because she wants to do a gut study (poop study) and it involves three days worth of specimen collections. I’m not super stoked on collecting my own doody anyway but on top of that, it comes with about five thousand vials and a ten page instruction booklet, as well as about ten different brightly colored inserts all telling you to read ALL of the instructions before you do anything at all. If I haven’t already mentioned it, I work a lot on top of all the cooking and preserving. I looked at all that stuff and my poor overloaded brain just said NOOOOooooo.

        So long story short, should probably just suck it up and collect the specimens, then make my follow up. 🙂

        Thanks again for all this info. I think it could definitely help me to consider that triggers might not be specific allergens so much as, like, circumstances.

  4. MCAS, MCAD treatment protocols help and can be used without a formal diagnosis. Ketotefin, cromolyn sodium and compounded antihistamines plus other herbal and pharmaceuticals for MCAD help a lot in addition to avoidance and learning triggers. NDs and MDs can prescribe even if not allergist. And many are OTC so you can use without a DR but make sure its from reputable corn free suppliers like Pure Encapsulation, Terry Naturally, etc.

    I noticed you are in WA so here is a local group to your region. You can get some referrals to more local Drs familiar with MCAS/MCAD and support on your journey. https://www.facebook.com/groups/196624280427400/927190724037415/?notif_t=group_activity

    I find it is nice to not be alone with corn allergy and MCAS (and EDS and lots of other chronic stuff that comes with it) with the online community. I get anaphylaxis from corn and bucket theory really applies to me regardless of my many triggers. However I test negative on all standard allergy tests because it’s mast cell reaction not classic allergy but symptoms look the same and worse than classic allergy. Good luck on your journey to balancing and protecting your health as best as possible with your condition.

    Heres some more links I find helpful
    http://mastocytosis.ca/MSC%20Information%20Pamphlet.pdf

    Blogs-
    http://www.mastattack.org/2015/05/mast-cell-disease-fact-sheet/
    http://www.mastattack.org/2014/07/diagnosis-of-mast-cell-diseases/
    http://methyl-nation.com/mast-cell-activation-disorder-symptoms-triggers-causes/

    Videos-

    Mariana Castells, M.D., Ph.D on MCAD


    Dr. Anne Maitland on allergies, MCAD and EDS


    Dr. T. C. Theoharides presents “Mast Cell Disorders”


    Mast Cell Activation Symptomatology

    Medical Journals-
    Mast Cells in Allergic Asthma and Beyond http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2995967/

    MCAD Diagnostic criteria proposed based on clinical studies
    http://www.jacionline.org/article/S0091-6749(10)01333-3/fulltext

    A long Clinical PDF from Canada on Mastocytosis and MCAS
    http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdf

    Allergic Mastocytic Gastroenteritis and Colitis: An Unexplained Etiology in Chronic Abdominal Pain and Gastrointestinal Dysmotility
    http://www.hindawi.com/journals/grp/2012/950582/

    Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases.
    http://www.ncbi.nlm.nih.gov/m/pubmed/26162709/

  5. Greatly appreciate all your wise advice for all these years! You saved me from thinking I had a weird meat allergy, it was corn based sanitizer, when meat was one of the few things remaining for me to eat.

    After decades of dealing with similar illnesses and issues with family members and finally myself, I have discovered that these were problems that combined to create our health issues:
    1. Root canals (it is impossible to sanitize the zillion lengths of tubules). It seems like we tolerate these in our system for years or decades until other factors combine to weaken us. There is a new article somewhere in an endodontics journal that now confirms this, I’ll try to dig it up again.
    2. Antibiotics depleting the gut microbiome – yogurt or probiotics supplementation is only one small part of the fix. Complete restoration of your gut microbiome is needed which includes prebiotic fiber, restrictive nutrient rich diet similar to that given by Dr. Terry Wahl, probiotics.
    3. Mold exposure. Maybe this should be first, but I do feel the other factors set the groundwork for mold whack you. People with solid immune systems may only sniffle in a building that would have killed me. Rutgers did good work on this http://news.rutgers.edu/news/symptoms-parkinsons-disease-linked-fungus/20131110#.WK3KR3Q8KhB
    4. Side effects from prescription medicines and homeopathic medicines for mold.
    This book by Kurt and Lee Ann Billings was one key to our recovery,

    5. Parasites. Many people pick up parasites and don’t know for decades. Dedicated folks online have shared their pics. An excellent resource is http://annlouise.com/books/guess-what-came-to-dinner/

    Basically, small factors combine to mess you up and weaken you. For us, there was no meta disease, it was a collection of these factors. My first step was moving out of a house that had mold and my final step was a dental cavitation surgery and removal of two root canals (proper removal, see Luschas below for details). 20 pounds melted away in three months as if they’d never been there. Same diet, same exercise. And I felt energetic. As if someone had turned on the sun.

    If you are doing poorly, it is hard to find foods you can tolerate, etc. I know. Believe me.

    An excellent resource for some issues is http://www.debugyourhealth.com written by Susan Luschas who has put her MIT PhD in engineering to good use as she reaearched, analyzed, and saved her own family from health disasters. If you have kids who are sick, check out the current pics of her kids, one of whom had been autistic in a corner with no help from the medical establishment.

    Everything you put in your mouth must be there to help you. No processed foods, no sugar or sweeteners, etc. I chose to eat raw dairy including butter, kefir, and milk from a farmer whose farm I liked as being clean, healthy, and in good condition (I raised horses years ago, so basic livestock care standards). Fab Ferments in Ohio is my new favorite beet kvass, btw, so a shout out to them. Avoid sugar, so limit kombucha and watch the sneaky sugars companies add.

    We have found Dr. Simon Yu to be helpful for parasites, albeit grouchy, but he works tirelessly to save sick people and he really cares. Dr. David Ou is excellent for mold and exogenous toxins that are messing up your system. Johns Hopkins will kill you. I don’t recommend going. I got my Hopkins graduate degree in the early 80s and their problems and approaches won’t change in my lifetime. Cleveland Clinic has a functional medicine department that looks good, if you want an institutional stamp of approval, but I don’t know if they can help re mold or parasites.

  6. Wow! I thought you were telling my story.

    Last Easter 2016, I became so I’ll I ended up taking three months off work, to become worse by August, and ending up on anti anxieties by September. I couldn’t breathe, o2 levels spiked the worse the breathing became. Blood pressure spiked, allergy symptoms became worse and significant. 7 blood tests, including whole range of autoimmune and lupus screens. stress tests, three breathing tests, all normal. need for Claritin, made worse and made better. Severe brain fog, While I’d been managing to push through work, the fog and horrendous memory was forcing me to consider how I could leave work, because I couldn’t do what I needed to. Up till about 3 weeks ago I was up to 8 pills a day to function and two very expensive puffers, while also feeling that the pills were contributing to things becoming worse. This was treating the symptoms. The GP, the lung and the skin specialist could provide no answers after 10 months. I was told by one of the Drs that my daughter and I were the most allergic people he’d ever met.

    The referal to see Dr. Cheuk in Calgary finally came through. He was not the first appointment, that was with another allergist, but that one retired. Dr. Cheuk was the next option. Thank god.

    We went up to see him in February. We were both tested for a full screen, and I was also tested for tree nuts, as I’d reacted to hazelnuts and pistachios previously with neck, throat, tongue swelling.

    My results came back with a histamine base of 3 and nothing else – at all.
    My daughters came back with horse and cat, of which we have none, and a couple of weeds. We are experiencing snow and ice. If it were weeds, then her symptoms would be distinctly seasonal. They are not.

    First thing Dr. Cheuk asked was if I could handle Gaviscon. NOPE, worst reaction I’d ever had was to Gaviscon. He said, of course not. It’s all corn.

    A lengthy discussion later about molecule size and receptors on the cell. Receptor adaptations over time, to possibly ward off disease, have decreased the receptor size. Corn does not fit in this adapted receptor. Neither does North American wheat. I didn’t need to ask many questions, as he’d already answered anything I could think of. Usually I ask lots of questions and get no answers. He’d told me my life story, including testing negative for caeliac, described every symptom I’d had, any “fake” allergy reaction. He told me what my story was. Much like yours.

    He said his clinic is doing research in how in some people, intolerance for corn manifests as allergies that test negative. They are a long way from being published. They are struggling to find controls needed for the study.

    So while I left his office on a high because it was the first time ever leaving a Dr. visit with no questions left unexplained, I was saddened by the reality. No corn. Any? NO, none, ziltch, zero. If you want to be better, none. I could eat bread, but it had to be made from flour produced and grown in Italy or the Middle East.

    https://www.ratemds.com/doctor-ratings/69929/Dr-Stephen-Cheuk-Calgary-AB.html

    Thank you for your thorough sharing of your learnings. I’ve been as careful as I can for the last three weeks. The cleaner I get, the greater the sensitivity. But finally I feel like there is hope. Not just to feel better, but to be normal.

    • I forgot to add that the body’s immune system goes into crazy overtime with all those corn molecules and the larger North American (GMO) wheat molecules in the body not doing what they are supposed to be doing.

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