Musician with celiac, and why it's good to know about food allergies

Here's an article on musician Killick (Eric Hines) and his experiences with a celiac-disease related H. pylori gut ulcer:

killick on celiac disease and "bloodletting"

this reminded me of a recent encounter with a friend. she said "why would you WANT to know if you had celiac disease? i have a friend who's avoiding the doctor for just that reason. she doesn't want to know. it's a personal decision."

at first i agreed, but you know what? avoiding severe and potentially life threatening complications is a good reason to know about food allergies, sensitivities, and intolerance. yup.

also, having a simple solution to a medical problem is a good reason to know. as much as i bitch and moan about how hard it is to make hypoallergenic food, i am still thankful for the fact that my condition is treatable, that it doesn't require medicine (being sick did, though!), and that it DOES make me aware of how fucked up the US food system is in general! more good reasons to know!

two interesting articles about HIV

Today I read this really great article on how AIDS doctors are finding that HIV drugs are causing premature aging. It's something people would never think about, but is apparently happening all the time.

One thing that did bother me, that isn't really the point of the article, is the number of people bemoaning the fact that their HIV treatment regimens are impacting their ability to hold high-level business jobs. Not to diminish the trauma that comes with involuntary deskilling and transitions from law jobs to a blue collar work, but this is an example of lots of things that are wrong with our economy. People with business jobs feel entitled to them, like the economy somehow inherently guarantees that those who are smart enough and good enough deserve life-long six-figure employment. In reality, the economy guarantees nothing, and the people who get high-level business jobs are usually born into it through some combination of class factors. Everybody works hard. The people who clean your offices work way harder than you, so don't say that hard work alone gets you everywhere.

Also... I wonder what happens to these people's health coverage when they lose their jobs? One interviewee focused exclusively on other "financials" in the article, and another had to go on disability, but I wish the article had addressed the reality of losing one's HIV cocktail coverage along with one's job.

Last but not least, the article downplays the fact that the majority of HIV-infected people in this world have far worse dilemmas to face: not being able to afford drugs at all, not being able to protect their unborn children, not being able to treat complications of the disease, etc. I know that's not the focus of the article, nor should it be, but I think a lot of medical researchers and writers could be aided by thinking about how people throughout the world live with a disease, not just people in the first world.

******************

Ok, better news! In Uganda, doctors have found a way to block most HIV transmission from mothers to children. Apparently Uganda is the only African country that is effectively decreasing its infection rate and preventing further infection. Yay for innovative public health solutions!

Mmmmmmmmmmmmmeat!

Some interesting links on the use of antibiotics in the meat industry. Sigh. Unless we change the way we get food, we'll never improve our health:

Danes say that subtheraputic antibiotic use has no place in hog raising

Anti-biotic and acid-resistant e coli is scary

Let's say goodbye to factory farmed meat, shall we?

not so sick after all? maybe?

[I know, I know, I haven't posted on here in forever. Things have just been crazy busy. In any case...]

I went to the doctor today and got some exciting news. All of the crazy treatments I've done to take care of my allergies and guts have actually been working! I am actually getting better!

It's kind of funny. I was trying to get "well enough" to do some other treatments, but that preparation actually was what I needed more than the treatment itself! I was working toward going on low-dose immunotherapy (LDA), which is a special kind of allergy shot that actually works on food allergies (I highly recommend people with food allergies check it out!). You have to do lots of onerous things to get on it, but it takes years less than traditional allergy shots and you only have to get a shot quarterly, instead of 1-3x/week. In any case, doc found out I had some really bad gut flora problems that meant that my body probably couldn't make good use of the LDA, so that had to be treated first. In short, I'd been on so many antibiotics that it killed all of my good gut flora. When that happens, it's hard to tell if the body is actually allergic to everything, or if there's just all sorts of spurious inflammatory and allergic reactions from the badness going on in your intestines. In my case, it looks like the gut bacteria was the main problem, in my case!

Now I only have two true allergies showing up in my bloodwork, and neither of them are to foods. That's fewer than most people, especially living in the South (which is Allergy Central, if you didn't know). I'm still sensitive to about a jillion foods, due to all of this gut weakness, but now there's actually a chance that I can get better and re-integrate foods (very slowly!) into my diet. I may yet eat soy again! Also, I'm off almost all of my meds, and have had the fewest sickly/symptomatic days in a long time.

So, all in all a very exciting day, but also a day with lots of conflicting emotions. First, I'm kind of anxious about even saying anything about it. I'm so afraid that I'm just going to jinx myself and bring some horrible health consequence upon myself. But I've been doing better and better for about eighteen months now, so I figure I can actually say *something* at this point. Also, I think I don't really believe in jinxing myself at this juncture. When I was younger, I felt like I actually could, since everytime I thought I was getting better I was getting worse again. Now I know that it was just because I actually did have a lot less control over my health. I was in situations that made it so much harder to consistently take care of myeslf. I was under crazy stress with school and then work, went through a couple 1,000 mile moves, was incredibly, incredibly broke, and didn't really know what I needed to know to take care of myself.

Those kinds of structural pressures can make it impossible to stay healthy. If I were a doctor now, knowing what I know, I'd be sure to remind myself of what my patients can and can't do, given their limitations, and advise them to do the interventions that would help them the most. For example, should doctors just assume that people can afford their meds, or that they have enough time to get enough exercise and eat well? What kind of advice can they give for improving health in the course of a real person's day? If I had someone with my problems, I would have advised them to focus their money on taking better care of themselves, rather than spending hundreds a month on prescription, OTC meds, and doctors visits. I would have told them about how frozen vegetables can be just as cheap as store bought white bread. I would have said that you can't live on Mac and Cheese alone.

As much as I feel like I'm in a better position to stay healthy, I'm also really worried about relapsing. Throughout the course of my illness I've always had times of feeling relatively OK, and then been smacked down again by feeling crappy, so it's hard to trust a good time. If I get in the situations that made me sick in the first place (living in a moldy home, taking lots of antibiotics, moving to places where I can't stand the local allergens, over-exposing myself to certain foods like cheese, wheat, soy), I could get sick all over again. Knowing that kind of kills me a bit. But I can't let that get me down... I know I just have to be thankful for finally figuring this out, and knowing where to go from here.

I am the closest I've ever been to a clean bill of health, but it is still going to be A LOT of work. Having typical allergies almost sounds easier than having sensitivities, because then I could take the treatment and it would actually work within about a year. Instead, I have to continue being ridiculously dilligent about what I put into my body until I get healthy again. It's a lot of pressure on me, and requires a hell of a lot of discipline. It feels like it would be so much easier to just rely on medicine and a cure, but that's probably one of the big problems with America. We expect health promotion and medicine to be all about "fixing us when we're broken," rather than accepting the hard reality that health is a day to day practice, predominantly determined by the patient's behavior. Most of the major things that plague us and go wrong with us, such as heart disease, diabetes, digestive disorders, high cholesterol, osteoporosis, allergies, and arthritis can be improved by taking better care of ourselves, but so many Americans don't know how, and many that do still don't do it. And it's not like our busy lives, packed to the seams with both work and friends/family, makes it easy.

Also, I got some crappy health news in the last couple weeks, which does put a damper on this semi-clean bill of health. Yeah, the abdominal pain I've been in on and off since March or so may actually be an ovary gone wrong; a cyst, an infected cyst, torsion, something... they don't know yet. I get an ultrasound soon, and then they go from there. I don't even know what I want to happen from this. On the one hand, I hope they find something so that I have an explanation for the pain, and a plan for getting better. On the other hand, most of the treatment options are not so good. They range from monitoring it, in which case the pain doesn't go away, to having an ovary taken out. As much as I don't really have plans for that ovary, and kind of like the term "oophorectomy," I know that having an ovary removed would be a pretty serious deal. In any case, no need to get ahead of myself until we know more.......

In response to this new condition, several people in my life have made comments like "There's always something wrong with you!" or "I'd expect that, given all of your other problems!" These are kind of hard comments to take, as neither of them really mesh with my understanding of myself as a person who is healing. First off, I am actually almost healthy, for the first time in my adult life. I will always have to work harder at it than other people, but I feel like I may actually get to live a normal life fairly soon. Second of all, this new problem has nothing to do with anything else that has happened to me. I guess there's some chance that it has to do with my body's tendency toward inflammation but... that's about it. This is something that can happen to anyone, and it just happens to be coming on the heels of fourteen years of other sickness for me.

In any case... figured all of this merited some comment. I'm hoping to get back on here more soon, to write about all the interesting stuff going on with health care in this country. It's such a pivotal moment... and yet a moment in which I have no time... sigh.

girl suspended from school for taking prescription

I just read this article about a girl who was suspended from school, and faced possible EXPULSION for taking her a prescription medicine at school. Apparently most schools don't let students bring pills of any kind, for fear that they're going to lead to LSD or demon-reefer use. One state even had a law that said you needed a doctor's note for sunscreen!

Ok, isn't this a little ridiculous? Wouldn't requiring a doctor's note just keep a lot of kids away from the sunscreen they need, or the ibuprofen or antibiotics they should take as they get over an ear infection? gaw.

THE DIET FROM OUTER SPACE

When you're in elementary school, you get picked on for anything - the color of your shoes, the frumpy bowl cut your aunt gave you, being too smart, falling behind, picking your nose, hanging out with the girls, not having a boyfriend, whatever. If I had to go through what I'm going through now, but as an elementary school student, the other kids would think I'm from the planet Zoltar or something. I thought that I would be spared from such criticism, since I'm part of the adult world now (at least nominally), but in reality I've felt just as alienated as a schoolkid.

So here's the story: I went through a long period of being really sickly. I was having a variety of digestive problems, and everything was just getting pinned to my old diagnoses (which are more or less untreatable by western medicine). Then I went to see an allergist for my severe allergies to three seasons of the year, mold, and houses. While they were at it, they assessed me for food allergies, and the results suggested I might be allergic to legumes. Thus began the Unreal Diet that I've been on, in some capacity or another, for the four years since.

My first assignment was to eliminate legumes for a few weeks. I was a vegetarian at the time and resisted, but ultimately gave in and tried it. I felt a good bit better, not eating legumes. Then I tried "The Food Challenge," which sounds like something on a game show, but isn't actually any fun in real life. Best case scenario, you can digest basic foods. Worst case scenario, you have to give up some food forever or risk anaphylaxis if you do choose to keep eating it. Awesome.

For my first Food Challenge, I bought a big bowl of Thai tofu at Whole Foods and went to town. I thought that nothing could hold me back from my devotion to keeping animals uneaten, and was sure that I'd be fine. But before I even finished eating, I noticed my hands started swelling. I got hives. I felt nauseated, and the stomach acid started churning its way into my esophagus. Later on... yeah, let's not get into what happened later on.

Next I went for the vegan plate at my favorite fresh-mexican restaurant. It's just a plate of black beans, pinto beans, salsa, guacamole, and rice. Maybe there is a little lettuce for good measure. I chowed down with my trusty friend Christa at my side. And the hands itched, and swelled, and I got hives. Though I didn't reveal it to her, I felt like I was going to hurl.

In the months that followed I started getting used to the fact that my life was going to be a science experiment for quite some time. While others my age were experimenting with drugs, I experimented with soy lecithin and oil (not allergenic, I learned), lentils, carob, and tamarind. Did you know they're all legumes? Do you have any idea how many foods soy protein is in? Many, many, many foods. Almost anything processed. So if you go to a restaurant and have a sandwich, it is probably in the bread. And quite likely in the meat, if that's what you eat. Yummy soy-sci-fi-meat products.

Allergies notwithstanding, I experimented with staying vegetarian. I tried all alternate sources of protein: whey, cheese, eggs, etc. Not that any of these are as vegetarian as I wanted them to be. It's kind of disheartening to be the vegetarian that has to eat lots of high-fat, animal-derived protein. The whey made me really sick, and the cheese wasn't cutting it. I tried weird alternatives like hemp protein, but never felt like it was working well enough. Eggs made me sick too, so with no reliable source of vegetarian protein I had to stop worrying and learn to love the meat.

I still didn't feel all that great, but I did feel better having removed a whole class of food allergens from my meals. I missed being vegetarian and used dairy to keep me from being a total meatavore. But over time I got sicker. And sicker. And then sicker than I had ever been. My sinus infections were practically constant, my asthma was totally holding me back, and my allergies were uncontrollable.

That's the point at which I got an acupuncturist. The receptionist told me that the person I was getting was really good with nutrition, and had a nutrition degree. I thought "Why would they assign me to such a person? I eat really well! I eat as low meat and low fat as possible, as organic as possible, and much better than most people I know!" I worried that by focusing on nutrition my acupuncturist might miss the real cause of my asthma and allergies. That's one of the many irrational fears I had before starting with Chinese medicine.

My acupuncturist went over my whole medical history, and every factor that might affect my health. She asked a lot of questions about what I ate, and said that my diet was imbalanced and this was probably making me sicker. She gave me a Chinese medicine guide to buying food, with general rules like "organic is better than not." Duh. Other rules seemed to make less sense. Like, "No added yeast. Fermented foods in moderation." In addition, she thought that I should try eliminating wheat and/or dairy from my diet, given my extreme digestive problems.

I was skeptical at first. I LIVED on wheat and milk. How could it be making me sick? Wouldn't I notice if it was making me sick? Still, I gave it a try. Another round of experiments began. Wheat was no thang; it didn't seem to matter whether I ate it or not. Dairy was another matter, though. I gave it up, and a miracle occurred. The miracle of solid poop.

In the year or so since then, I've continued to experiment. I tried eating dairy, despite the obvious health benefits of not eating it. I tried goat's milk and hyper-fermented yogurt. All of these things made me incredibly ill, and I've realized that this is my major allergy/intolerance. I tried adding legumes back in after cutting out dairy, but so far it hasn't worked. And now, I'm on the grandest experiment of all.

I've gone on a complete natural foods/Chinese medicine/probiotic diet. I don't eat anything that people weren't meant to eat and digest. I try to make my meals and days as perfectly balanced as possible. My vegetable intake has probably quadrupled. I don't eat any processed foods, as almost all of them have something I'm not supposed to eat in it (often an allergen, sometimes just nasty food chemicals). I don't eat any refined sugar (except for occasional slip-ups), and generally don't even eat fruit (it has a ton of sugar, btw). I've accepted that lean, meat-derived protein is a really good force in my diet, and for my health. Hell, I eat bacon (all-natural bacon), and I have still managed to lose a lot of weight. My digestive system works, despite eating things that I equated with devil worship* when I was vegetarian.

Everyone had been very encouraging of my hypo-allergenic diets. I was surprised at how often my friends would make things dairy and legume free so that I could eat them. The full natural foods diet, however, has not been so easily accepted. A lot of people think it is "pretty crazy." I am often asked "How long are you going to have to do it?" and sometimes it seems like people doubt my ability to do it at all. The answer is that I'm going to do it as long as it takes. I'm going to give my body as much a a rest as possible, after years of feeding it nasty allergens. I feel pretty great on the diet, and so I'm OK with the diet so long as my lungs, sinuses, and digestion continue to improve.

I realize the diet is pretty extreme. It took me about a year to come to terms with doing it, and lots of preparation and planning so that I actually could stick to it. This is actually about my fourth major attempt, and the first time I've made it a full month without totally crashing and burning. But isn't it crazy to think that this is the "extreme" diet, and all of the unhealthy stuff is the "normal" diet? That we are totally socialized to believe that whatever is at the grocery store is what's best for us, or at least "fine?" That WonderBread is, in fact, bread?

One of the most common questions I get is "What if you can't go back on the normal diet?" and relatedly "What if this makes you hyper-reactive to 'regular' foods?" In response, I'd have to ask, "Do you really think it's a health *liability* to eat too well? Should I not eat the foods that are best for me, and allow my body to heal, just because I might not be able to digest a bunch of additives again someday?"

Yeah, it is NEVER, ever, a liability to eat the foods that are best for you. Eating more vegetables will never make you sicker (unless you're allergic to the particular vegetables). Cutting out additives, excess fat, refined foods, and crappy carbs cannot be bad for you. It may take some readjustment for your body to learn how to run on crappy fuel again, but that's no reason not to try eating real food for awhile. Most people who go on my kind of diet find that they can eat everything in moderation again. Some don't go all the way back to a "normal" diet because after going on the all-natural-foods diet the effects of unnatural food on the body become really clear. For example, this weekend I slipped up and ate some super-processed cookies with tons of sugar in them. I meant to eat just one but in reality I ate... eight. Yeah, you can't just do that after totally detoxing from refined sugar. It actually made me feel sick to my stomach, and I felt crappier the day after too. These foods have similar effects on people who are used to eating them, it's just hard to discern the effects when the body has already adapted to eating loads of crap.

I'm not intending to live on such a restricted diet forever. The goal of the diet is actually be able to eat MORE things. I'm hoping that once I get over the damage I did to my body by eating dairy for 26 years (despite the severe allergy), that i can eat legumes again. Isn't that worth a shot? It seems that I'm already regaining tolerance to some random foods I am allergic to, and my tolerance to ye olde moldy houses is increasing too. While my diet is currently pretty inflexible, I look forward to a more flexible future, one where I'm not held back so much by my asthma and allergies.

It has been hard at times, socially, with the diet. I feel bad about having to direct my friends to one of the few restaurants on my "list" and having to send around an excel spreadsheet with all of my food allergies listed. It is incredibly hard to explain to new people, who think you're either crazy or must be really, really sickly to even consider such a diet. Though the latter is true, I don't always like to admit that the first time I meet someone.

Going on the all-natural diet makes visible a lot of our underlying assumptions about food and culture, and that's not always an easy process. You definitely do feel like the 2nd grader who doesn't know how to tie her shoes, and is thus thought to be from the planet Zoltar, but there's a lot to be learned from this position. The more I think about it, the more I see us as a culture of the feast, where food and alcohol factor prominently into social interactions, and the littlest nonconformity is suspect. Refraining from alcohol at one particular meal, or not being able to go to one restaurant or skipping the birthday cake can all be shocking deviations from normal social behavior. Perhaps most importantly, I've learned that we consider a real food diet to be the Diet from Outer Space, and think that the space-age, corporate-sponsored high-tech food science diet is real, and even healthy.


*Actually, I think eating meat is worse than devil worshiping. And from an environmental perspective, I'll never be happy with the fact that I have to eat meat, which requires more energy to produce than any other food and is worse for the planet than driving.

Ew, that's so gross! Women on bodies and nastiness

About a year ago, I found out I have a secret reputation at work. I was The Girl Who Hocked Lugees in the Bathroom. Apparently the women who worked in another department, and whose offices were close to the bathroom, had been keeping a tally of the number of times a day I coughed something up for my lungs, discussing amongst themselves how gross it was. I had been trying hard to keep it to once a day, and only when I was basically choking on phlegm, and only when I didn't have time to walk outside to do it, but there I was, coming to terms with the fact that my asthma was water cooler conversation material.

I also found out that these women kept tabs on everyone's bowel movements. They knew who spent "too much" time in the bathroom, who took hilarious reading materials in, and most importantly, who stunk the place up the most. Even after this department moved to a different part of the building, they still gossip about this. Just the other day, my closest work friend was incredulously commenting on someone who had to take a dump every morning around 11:30ish. I really don't see what the problem is with this. Should people be... less regular, because it would make someone happier? Should we try to only go once every other day, so that we reduce our impact on the workplace? If we have digestive disorders, should we just go home to defecate so that people can't tell by the time or smell that something is wrong? Are we supposed to wait or something?

Sorry to break it to you, but that's not gonna happen with IBS or IBD. Around this time last year I was going to the bathroom at work up to 7 times a day. Never for very long, of course, but... if people are keeping tabs on our bodies like this, I don't know how they wouldn't have noticed that. I've never heard these BM rumors about myself, but I can't imagine that they don't exist. Perhaps mine are so bad that people can't admit that they've discussed it. How did it happen that women became the world's poop monitors? Men might joke about this shit, but women actually care about it.

This reminds me of the issue with women farting. When I was growing up I had a female friend who was convinced that women shouldn't fart, which I assume she learned this from her parents (my parents are medical peeps so if anything I heard too much about bodily functions). In high school she started dating a boy and told him early on that women just don't fart. Biologically. Medically. That's just the way it was. She tried to get me to side with her, and help convince him of this fact, but I didn't really want to get involved. He kind of believed her, and I guess I can see why he would because she managed not to fart in front of him for years. Then one day we were all sitting around, watching a movie, and she finally lost it. We all laughed and the only thing he was bothered by was the cover-up. He was a guy, so of course he was OK with natural body functions.

I think these things are examples of how all of us, and women in particular, are socialized not to accept our bodies as they are. From birth we learn that our bodies are something to be managed, constantly cleaned, and groomed, lest they fall back into their natural "nasty" state. Some of this is, of course, to our benefit, but in the case of women the grooming bit takes on its own life. We learn that it's better if we have certain hairstyles, if we do our nails, and if we wear make-up. Skin is meant to be unbroken, waistlines as small as possible, and of course no visible signs of illness or deformity. And of course similar socialization occurs to encourage people to look as white as possible. All of this is to present the highest-class, most valuable (and consequently healthy) image. When we hear people talk about the nasty things our bodies do, to our face or behind our backs, it exerts a socializing force on us, shaming us, and often subconsciously forcing us to act differently. A stealth cover-up ensues, and the illusion that our bodies aren't gross is preserved.

Personally, I think we could come a long way in accepting bodies as they are, as there is no standard operating mode. Most people are healthier in some regards, and unhealthier in others. This is much in the same way that some people have more money, red hair, a nice ass, or skin that tans nicely. These are things that should be personal and arbitrary, but become factors that determine way too much in our society. Just as we value different races, classes, genders, and sexualities, so too do we value better functioning bodies, reinforcing the myths that we're all healthy and that healthy people are always better.