Month: March 2014

One of the surprising things about having food allergies is the fear of getting sick and whether the process of getting well will make you sicker. It’s much more complicated than you might imagine.

In January, I managed to get either bronchitis or pneumonia, which affected my asthma to the point that my nurse practitioner considered admitting me to the hospital because they couldn’t get a peak (air) flow at first. I did a nebulizer treatment in the office and then talked them out of admitting me. Why did I talk them out of admitting me? Well, yeah I hate the hospital, who doesn’t? But my first reaction, was “what would I eat? There’s no way they could serve me corn-free food, let alone deal with the other 12 allergies.” My second reaction was “I’ll get a rash from the sheets; there’s coconut in their detergent.” And although I’ve saved the Corn Allergy Girl’s Emergency Room Safety Doc to my phone, I was there by myself and wasn’t sure I had the air to self-advocate for what I would need at the hospital.

I didn’t have the money to pay for compounded medication, as our insurance doesn’t cover it and I didn’t know how long it would take to get it compounded. I ended up choosing the lesser of two evils and taking three regular medications, all of which had corn. Although it did help me breathe and get over the bronchitis or pneumonia, it also caused me to have a corn reaction the entire time I was on the medication. So I swelled up like I had gained 20 pounds, broke out in cystic acne, broke out in blisters on my foot so that the bottom of my foot had open wounds in a 2 inch square area, had terrible brain fog, and had insomnia during the whole time. And it took me weeks to get clear of the corn reaction, once my lungs had cleared and I could breathe again, and for my foot to heal. 

This raises the question of what will happen when I really have to be admitted to the hospital. I’ve known that I really need to have a plan in place, but I still haven’t gotten myself together. I would need safely-laundered sheets, pillow cases, and bed clothes; safe toiletries; a list of the foods and derivatives to which I’m allergic; and actual safe food and drink. I keep putting it off, but one of these days I’m going to need it and then I’m going to be sorry that I didn’t get around to doing it. 

One of the things I find most disturbing about seeking medical care is that the medical profession just doesn’t seem to know what’s in the stuff they prescribe. I love my nurse practitioner, but when I needed an antibiotic, she asked me which one was corn-free. I had some testing done at the time of my annual physical and I turned out to be low in Vitamin D and magnesium. The nurse called to tell me the results and to tell me to get a supplement. I laughed and said I wouldn’t be able to find one that was corn and coconut-free. The nurse, in an attempt to be helpful, called back later and left a message with several suggestions. Then I had to call her back and tell her that half of the ingredients in the ones she had suggested were corn and coconut derived. 

I went to the optometrist in December. She said my eyes looked irritated and I needed drops. I said that I was allergic to milk, corn and coconut (these are the most prevalent of my allergens in medications). She handed me three sets of drops so I could look at the ingredients. None them were safe. I tried to seek alternative care through a naturopath, and she wanted me to go on supplements, and I again laughed. And sure enough, all of the ones she wanted me to take had corn and/or coconut derivatives. I got such a bad vibe from her lack of knowledge and insistence that it was a good company making the supplements that I never went back.

Before I was diagnosed with the corn allergy, I was having a lot of trouble with brain fog to the point that I was literally concerned that I was getting a brain tumor or that I had early dementia. I was forgetting the names of people I saw every day and the names for every day objects, or saying the incorrect word for an object. Some days it happened 25-30 times by noon. I went to a neurologist, an audiologist and did a sleep study. Then, being severely unhappy with the neurologist who didn’t listen to me, went to another one, and got sent to have a dementia evaluation. During this time I was told that it was sleep debt from my insomnia and mild sleep apnea. I was prescribed 3-4 different insomnia medications, none of which had the slightest effect. So I decided to discontinue treatment. Guess what? When I went off the corn, the brain fog went away, one of my two types of my insomnia went away, and I’m willing to bet if I ever went through the excruciating process of a sleep study ever again (unlikely in the extreme) that my sleep apnea will have diminished as well. I’ve dropped about 20 pounds or so, and gone down three sizes, without trying to since going off the corn, wheat and chicken after the last round of testing. Since then, every time I’ve been exposed to corn accidentally, I get insomnia that night, and for the next couple of days I lose my words. Sounds like a causal relationship to me. 

The problem with all this, and which will be discussed in greater depth in a future post, is that I cannot depend on my medical professionals to know whether medical issues I’m having are related or not related to food allergies. If they are not related, I cannot depend on them to know how to treat the problem given my food allergies, what’s available under my insurance plan, and what pharmaceutical companies actually make. And with the amount of self-advocating and figuring it out myself I do now, what happens when I really get dementia or can’t communicate, and have to go to the nursing home?  Skydiving, cliff diving or eating fugu in my old age sounds better all the time.

Now, my allergies aren’t quite as severe as Denise’s, and I’m not allergic to corn or coconut, which are in everything. In some respects, this is great, because I also have ongoing idiopathic (the technical term for “we have no idea why”) vitamin and mineral absorption issues, and the supplements I take are part of what keep me functioning. All the ones Denise and I have looked at together contain corn. ALL of them.

This past winter, one of my doctors did a full vitamin and mineral evaluation, and we discovered some really random deficiencies. It took three tries before we found a B-complex I could take — the first one that she recommended had an ingredient I was allergic to in it — and she’s the one who did that round of testing. I took the second one and got a cold. Or, at least, that’s what it felt like — one of those colds where, you feel fine, and then, sort of suddenly, your head is stuffed, your nose is running, your eyes are glassy and teary. That was a Thursday afternoon, and I called in sick the next day. Weirdly, though, around 5 pm, I started to feel fine. I guess there are 24-hour stomach viruses, so why not a 30-hour cold? Felt fine all weekend: I’d left the supplement on my desk. When I remembered taking it again, it was Tuesday. Same pattern, exactly, except this time I had to leave a meeting because my head was filling with snot. 30 hours later? Fine. To me, it was absolutely an easy call — allergy reaction — and one I had to convince my doctor of. We tried a third B supplement, and this one is fine, but you can bet I read the label about 200 times before taking it.

Our insurance company switched prescription providers this year, and of the three medicines I take, all of which are available in generic forms, this new company provides different generics, and at least one of the three contains milk or a milk-derivative, which is causing minor issues. Again, for clarity’s sake — I do not (probably) have a milk allergy, just severe lactose intolerance. I’ve been taking this drug for three months anyway, because being off of it causes more issues than being on it with milk, and I couldn’t get in to see my doctor until April anyway, to see if there is a way to ask for a generic without milk without getting a DAW (dispense as written) prescription for the non-generic drug which could cost me 70 times more. Yeah, that’s not a typo — it’s the difference between paying $1 and $70.

Milk and wheat are the basis for a lot of fillers used in pharmaceuticals, and there is no requirement that these be clearly labeled, anywhere, nor that pharmacists, prescribing doctors, or nurses have any knowledge of the allergens that may be present in the drugs they prescribe. So even if you think you are safe because your doctor is aware of your allergies, you are not. You need to ask the doctor to check potential allergens (if your doctor won’t or can’t or doesn’t know how, that’s really not great). Then ask the pharmacist again. And go online and check. If you’re on a name-brand drug, checking isn’t too bad; with generics, it can be kind of awful, and worse if the generics can be switched up any time the pharmacy company chooses.

Frankly the vigilance is tiring, and it’s tempting to castigate yourself for every slip. I try to remember how unhelpful that is, but stock it up as a reminder that no one else will advocate for my health the way that I do, partly because no one else has to deal with it when I get sick.

How were your food allergies diagnosed?

Denise and I have both posted our diagnosis stories in our blog bios. The medical tests recommended for each of us were different — her allergist recommended skin scratch tests, and my doctor had referred me to a naturopathic doctor because she couldn’t help, and my naturopath was the one who brought up food allergies. She recommended blood testing.

There is no standard testing protocol that everyone agrees on, it seems, but FARE identifies four paths of testing. After the medical tests, we both did elimination diets followed by food challenge testing. Our elimination diets varied in length — Denise’s lasted three months or so, mine was more than 6 months. The food challenges were … well, they were time-consuming and depressing, as most of the time, those foods identified as “potential” allergens made each of us sick. Yipee, real allergy identified. [sarcasm]

Treatment: Avoid trigger food. Forever. This diagnosis is secured, right?

(If you’re lucky enough not to know, a food challenge usually involves waiting until you feel well, and then eating several servings of a food that has been identified as likely to make you sick. And then wait three days, and record all symptoms. If you get really sick, never do that again. If you feel just kind of unwell, maybe try it again, or try different iterations of the food — eggs, egg whites, mayonnaise, for example — and see what happens. Depending on the severity of the expected reaction, you may need to do this under medical supervision. Please don’t read any of this as recommended medical procedure, though.)

This post on Gluten Dude really resonated with me, as I’m in a similar boat. I wasn’t tested for celiac until after I’d been told to cut gluten from my diet (it popped as an allergen on my blood test). So after cutting gluten (and a bunch of other things), I was told to go back on gluten and get the blood test, but it came back negative — did it come back negative because of the on and off, or because I don’t have celiac? The GI, years later, said he found no evidence — not really listening to the fact that I’d been gluten-free for a year and a half at that point. Genetic testing is complicated, as insurance won’t cover it for me easily because I “have no family history of celiac,” but I don’t have a full family medical history — I’m adopted. One of those catch-22 situations. 

My final decision is to never again eat gluten, as the last time I was accidentally exposed it knocked me down for two days. I’m okay with that decision, overall, as I’d rather be healthy than eat bread. But unlike “plain” food allergies, it would be nice to know if I have an autoimmune disease, instead of saying “severe intolerance to gluten with some of the hallmarks of celiac.”

I think that teasing out what you’re allergic or even sensitive to can be next to impossible, whether you’re talking about food allergies or environmental allergies. When do you eat just one food in a day? Or in a meal? Or when are you in a room with only one thing that you could be allergic to — dander, dust mites, pollen? How do you narrow it all down? How often do people even consider that allergies might be the cause of their health issues? My doctors didn’t for years.

See, I think diagnosis might be key in starting this journey, but it’s not the end of it. Knowing exactly why something makes you sick is sometimes helpful, but not as helpful as avoiding the food or trigger. The problem seems to be that the list of allergies can grow, change, expand, and so does the world. We can hope that medicine will catch up, too, but I’m not personally holding my breath.

What it seems to boil down to is using the tools your doctor or medical team can offer, and then doing a boatload (frankly, an ark-load) of research on your own. Read up. Use the magic of the internet. Get really good at trying to tease out the good sources from the questionable sources that may have some good information from the crackpot theories that somewhere in them have a product to sell to fix you. Ask lots of questions. Find other people online going through weird stuff and read what they’ve found out. Use the doctors again, if you can. And most of all, pay attention to yourself, and get to know what’s going on, both when you feel sick and when you feel well. It’s a lot of work, but generally no one else is going to do it for you.

One of the things I find so aggravating about diagnosis is that my ball appears to keep moving. And that I had a lot of problems for a lot of years that maybe wouldn’t have been problems if my food allergies had been properly diagnosed. Mark Kate is correct in that I have had scratch testing, and you can read about it at the link above. But I’ve also have two allergies that I just had big enough reactions to the food that I don’t need to be tested, I know I’m allergic. And in the last two weeks, I just hit another food that might be a problem. I had a reaction, hives and facial swelling, which faded when I took Benedryl, and I had a milder reaction to another form of the food a week later when I ate it by accident because I wasn’t paying attention (again, I’m an idiot, don’t follow my example). I’d like to do another formal food challenge, but I need to be clear of things and get my body back to normal, before I’m willing to confirm that it’s food allergy #14. 

At this point, I find allergy testing technology to be so unreliable, that it’s hard to deal. In the last round of scratch testing, I tested positive for seven new allergies, I got a 2+ for lobster and 1+’s for wheat, corn, potato, chicken, celery and onion. For the 1+ results, the allergist said this result meant I had approximately at 25% chance of having a true allergy for these reactions. Only three of the positive results were confirmed by subsequent food challenges, although one of the ones I’m calling a pass at the moment might be iffy. (I noticed some minute things, but it’s lobster, and I could have been otherwise exposed the last time I challenged it, so I’m calling it a pass. It’s lobster.) Of the three that were challenge confirmed, corn, wheat, and chicken, all of which were a 1+’s, the corn is fourth for severity of reaction out of all 13-14 food allergies. Crab which is my worst reaction in severity, is a 2+. I can eat picked blue Atlantic crab with no apparent reaction, but if I eat soft shell crab my throat closes and I throw up. Sunflower is my second worst reaction. I’ve had no medical testing to verify it, but the reaction was so bad, I won’t do a food challenge to confirm it. I don’t want to have to use my epi pen. Dairy which is my third worst reaction in severity is a 3+. Does any of this make sense? Nope. 

At the beginning, diagnosis seems like a life line, because you have some hope that things will get better and you’ll feel better once you know what to avoid. But there are false positives, and there are false negatives, and to verify you have to do food challenges. And there are people out there who don’t test positive to the serums at the allergist’s office, but have a documented reaction to the actual food. But for me, as time has progressed, I’ve realized that I have to pay attention to what’s going on with my body and watch what I’m eating, because testing isn’t as reliable as my observations and my actual reactions. 

“You are what you eat.”

Right. So what are you when you can’t eat half the foods that you used to love? Or any of the family recipes you grew up with? Or your favorite dish of your best friends, or the perfect brownie recipe you spent two years perfecting?

What are you? Lost and frustrated. And others — your friends and family — are lost with you.

Our food culture today is a bizarre landscape that includes mega-star cooks, entire networks dedicated watching people cook food you will never make, “food deserts,” corporate organics, farmers’ markets, some shady corporate political maneuvering, and an entire populace generally both obsessed with and confused by food.

This article has nothing to do with food allergies; it’s about making small changes to your diet to eliminate “non-real” food additives. I think this is the kind of article that expresses our collective cultural confusion about food. A diagnosis of food allergy or intolerance means you start reading all labels and learning things you maybe wish you did not need to know about how our food is produced. While I’m all in favor of people figuring out what makes them healthy or well, the seemingly random declaration of some foods as “real” and morally superior or “good” and others “fake” and “bad” doesn’t seem to serve a greater purpose, but it does start to explain the comments that those of us who “insist” upon bringing our own food to social events hear so often —

• “Oh, you’re so good to eat that way!”
• “You’re so healthy!”
• “That must be how you stay so skinny!” or “You must be losing so much weight on that diet.”
• “I’m so bad for eating this cookie!”

As we talked about last week, it’s a different health-based reason than most people think, but allergies often seem to get lumped with diet choices and food fads, undermining their seriousness and the toll they can take on your life. A food allergy diet is not a choice. It’s not a moral statement. It’s food that doesn’t kill you.

I read a maybe more pertinent essay last year that really got into food and what it means to us, individually and as a culture. This open letter to Paula Deen from culinary historian Michael W. Twitty is really worth reading, as I’ve been thinking about it since last summer. Part of what Twitty was saying is that the conversation around food has been somewhat divorced from both its history and meaning. At its base, food is energy. We consume so that we continue; it is fuel for our bodies. But food is a much larger social construct. Food is identity, it is connection, it is love. What we eat defines us, not in the childhood mantra of “you are what you eat,” but in our connections to the world.

Culinary traditions bind families and communities together, even through migrations as Twitty describes in the large mid-20th century movement of African-American communities from the rural south to the urban north. Think about your family’s traditions. Was there a special food for birthdays, or celebrations? A Sunday meal? A holiday treat? I think I could tell the story of my life through foods, from Cookie Monster birthday cakes, that one cookie recipe my grandmother made, through my mother’s stir-fry phase, through the successes and failures in the harvest gold kitchen of my first apartment, and through that absolutely magical brownie recipe.

This is one of the very reasons that adult-onset food allergies are so difficult. When the foods that define your family and traditions are now forbidden to you — when going to a family gathering means enduring the many queries about why you are no longer participating in the sharing of history-laden sustenance, or why you brought your own food, or explaining again that, no, you cannot “just have a bite” of that — you have to work around to finding that identity again. All of the old comforts are gone, and seeking the new, while potentially exciting, is rarely comforting.

When my forbidden foods list extended just to dairy, I found that food traditions other than Midwestern American — or anything North American — were easier and therefore worth exploring. Dairy is rarely used in traditional (even “Americanized traditional”) Asian cuisines. Chinese was safe, sushi was awesome, and even Indian was navigable. Vegan cookbooks taught me to bake without dairy and without eggs, as well as how to focus on vegetables and really use the depths of my spice cabinet.

As the list of forbidden foods has expanded, the ease of eating out has decreased. I didn’t realize for the first year or so how much I had let fear of getting sick circumscribe my life. Giving up control of my plate meant the potential for getting sick — not likely anaphylaxis (or not so far), but every time I get sick I have to re-face and re-conquer the fear of eating out after I’ve gotten back to being well. I was turning down social opportunities, packing my own food, afraid of the consequences. And I was missing out, not necessarily on opportunities to get sick, but on opportunities to socialize, make and build connections, and to learn how to be a good advocate for myself in restaurants. Not that the latter always works, but it is a skill that you need to learn and practice.

The other skill is learning to balance — my need to find and take advantage of safe social situations, my ability to create food-free or not food-centered social opportunities, and my own health. The trials of learning this balance are now part of who I am, as are my food allergies, and this outlet Denise and I created online. One of the reasons we started this blog was that we both needed a positive outlet for the frustration of needing to recreate the entirety of our foodscapes. The blog — well, our editorial calendar, which changes, but gives us structure — helps keep us focused on working out recipes for foods we want to eat again. Sharing them out via the internet, and the feedback we get from our readers encourages us to keep working on new things rather than getting stuck in our own ruts.

Beyond the food, the many conversations we have about our own frustrations and triumphs and failures has lead to this series of essays as we’re starting to feel more like the food allergy online world is a community that we want to participate in beyond our recipes. We’re glad you’re here, and thanks for reading.