Gluten cross-reactivity?

This article came across my radar the other day, giving me a proverbial lightbulb moment. Suddenly, everything is starting to make sense to me about this whole eating thing: why so many things that I “shouldn’t” react to make me so gosh-darned sick, and why my symptoms seem to be so random and caused by… nothing and everything, really. I’m not going to get into the science of it – the author of the article is a scientist after all, and she can do that far better than I can – but it answers so many of the questions I’ve had since I started seriously trying to trouble-shoot this thing.

In short, since my celiac diagnosis in 1999, and my fructose-intolerance diagnosis in 2003, I have tried OH SO MANY approaches, all with mixed success. Eliminating gluten was the big one – within a matter of days the symptoms I had lived with for years had diminished greatly. Diminished, but not vanished. Once the fructose part of the puzzle was solved, things improved considerably, but again, not 100%. And last year’s dairy ban helped as well. But things got better, then they got worse.

Per the article linked above, these are the foods that cause cross-reactivity. I’ve bolded the ones I know I react to:

  • Rye
  • Barley
  • Spelt
  • Polish Wheat
  • Oats (2 different cultivars)
  • Buckwheat
  • Sorghum
  • Millet
  • Amaranth
  • Quinoa
  • Corn
  • Rice
  • Potato
  • Hemp
  • Teff
  • Soy
  • Milk (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein and whole milk)
  • Chocolate
  • Yeast
  • Coffee (instant, latte, espresso, imported)
  • Sesame
  • Tapioca (a.k.a. cassava or yucca)
  • Eggs

Up for debate still are rice and eggs. Since I started following my quasi-autoimmune protocol experiment, I haven’t eaten rice. I have continued to eat eggs, 2 a day every day (along with an entire avocado, my favorite breakfast as of lately), and have not had any symptoms save for once following a misguided attempt at eating kale. (I love the stuff – LOVE it – but I know full well it doesn’t love me back, and I paid for it, for two days straight. I’ll leave it at that.) Eggs and rice have always been my “safe” foods, but at this point I’m not so sure about rice.

I already knew full well that I can’t tolerate most grains and dairy. But since starting my AI protocol experiment, in addition to rice, I’ve avoided soy (legumes) and potatoes (nightshades), two things I never really gave a whole lot of thought to before. I’ve also been diligently avoiding nuts – I had a small spoonful of my beloved almond butter a week or so into this, and didn’t feel so great a few hours later – so now I wonder if there is some sort of cross-reaction going on there as well.

As for coffee – yeah, I’m addicted to the stuff. Per the article, it was instant coffee that caused reactions – something I would never consume in the first place. I’ve gone off coffee twice in recent memory, under the care of two different doctors at two different times, both of whom actually recommended that I keep one or two cups a day in my diet because I functioned so poorly without it (both intellectually and biologically!). I’m pretty sure that my two cups a day of organic free-trade coffee isn’t causing any problems. Okay, maybe three cups a day.

So what am I eating? Mainly spinach, eggs, avocados, wild-caught and grass-fed proteins, sweet potatoes, butternut squash, brussels sprouts, cauliflower, broccoli, and all things coconut. (Speaking of which – if you haven’t tried coconut butter yet, what are you waiting for? Almond butter ain’t got nothin’ on this stuff!) And aside from the aforementioned kale experiment, I’ve felt absolutely great. Zero malabsorption symptoms. Zero. While it makes going out to eat even more challenging than before, it’s otherwise pretty sustainable.

The bottom line, I’m learning, is really, nobody knows much about this stuff except for those who have lived through it. Conventional wisdom, and the American medical profession in general, doesn’t give a whole lot of thought to the huge role that diet plays in one’s wellbeing. Rather ironic, considering it was Hippocrates who said, “Let food be thy medicine and medicine be thy food” – while it’s impossible to know precisely what he meant by it, I’m sure he didn’t mean “go ahead and eat that fake soy-protein filled processed food, then take a pill for it when you don’t feel so well.”

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Gluten intolerance, part two.

Turned out that having no job and no health insurance was a blessing in disguise. It motivated me to go back to school, first to finish my BA (how many people do you know who took SEVENTEEN years to finish college?!), then grad school. And while I remained uninsured, I had access to the student health center.

In early 2003, nearly breaking the scales at 5’2″ and 172 pounds, I made an appointment. Expecting the usual “IBS” runaround and the offer of meds that only made things worse, I wasn’t very hopeful. But I was desperate and knew that all I had to lose was my time. I told my tale of woe to the student health center doctor, who actually seemed to be listening to me. She told me to keep a food diary for a week and come back to see her. I did, reluctantly, because I expected the usual “Your diet is perfect! It’s low fat! You eat lots of fruit! Keep on doing what you’re doing!” response that had come from every doctor and nutritionist I had seen to date.

I was in for a surprise. “Where’s the protein?” she asked me. I told her I was vegetarian – I ate cheese on occasion and fish once in a while. I avoided eggs because conventional wisdom told us that they are cholesterol bombs. How the heck was I supposed to get protein in my diet?? She cross-examined me further. “And why do you eat so much sugar?” Huh? I ate things like fruit. Granola bars. Stuff that said “healthy whole grains” on the box. I was doing it right, wasn’t I?

Apparently not. “I think you have fructose intolerance,” she told me. Further, she went on to explain that the celiac testing I had had several years before was not done correctly – for the biopsy results to be valid, one had to be eating gluten consistently fro 6 weeks before testing. I had stopped eating it, completely, at least 4 weeks prior to the test.

I broke down in tears – it seemed like everything I had known to be RIGHT was now WRONG. Eating fruit was bad? Eating grains was bad? Eating animals was GOOD? What was I supposed to do?

The doctor told me to focus on protein and fat intake, and eliminate most carbohydrates. I was absolutely CLUELESS – I had no idea what a carbohydrate even was. She told me to read Atkins. I did, and at first I was horrified – I couldn’t do that! Eat bacon, are you kidding me… and not limit quantities? Right, that’ll happen.

But slowly, I was able to figure out some changes that would work for me. I stopped eating gluten again, immediately, and took it a step further to include ALL grains, even rice. No more processed “healthy” granola bars, no more bagels. I started eating eggs, which I had never eaten regularly before, and found they were cheap and easy to cook. I cooked salmon for the first time and LOVED it, once I got over the initial squeamishness of handling it. I limited my fruit intake to blueberries. My stomach suddenly felt MUCH better, so I found this a great motivator to stick with it.

I had a 30-day follow-up at the student health center, where I learned that in 30 days, I had dropped THIRTY pounds, and cut my cholesterol in HALF. I figured this doctor was on to something. Her diagnosis, based on dietary response and medical history, was “gluten intolerance” and “fructose intolerance.” While I would not “officially” be diagnosed as celiac, because I was unwilling to eat gluten again for 6 weeks and repeat the biopsy, avoiding it was simple enough. Avoiding fructose was trickier – it was in EVERYTHING, as all sugar is 50% fructose – but this time around, since I was avoiding all grains, by default I was avoiding all the processed gluten-free crap that I had loaded up on in the past. I thought I was cured, more or less, as long as I maintained a high-protein, sugar-free, grain-free diet. Easy-peasy, right?

But. There was only one problem: salmon is expensive! I was an unemployed grad student. I began, slowly, reluctantly, to try to wrap my head around exploring other protein options. In other words: eating animals.

Gluten intolerance, part one.

In 1997 I was diagnosed with celiac disease. Well, sort of. I weighed 89 pounds, had so much trouble carrying my books from my car to the college where I took classes that I had a handicapped placard, and had neurological symptoms from B12 and zinc deficiency (first suspected to be MS, later attributed to my then-vegan diet). My stomach wasn’t right. I was afraid to eat because I never knew what would happen next; all I knew was that there would be a good chance I’d need a restroom. I would go three or four days without eating anything at all. I had been to a good half-dozen gastroenterologists when I thought I had found The One.

I walked in, sat down, and begged her for help. She looked me in the eye and asked if I ate wheat.

Of course I did. I was vegan and lived in a Latino neighborhood; when I ate, I subsisted on bean and rice burritos and little else at the time. Never mind that those beans were likely loaded with lard. I worked on a movie lot, where bagels the size of one’s head are free and ubiquitous; sometimes I’d eat one.

Well, stop it, she told me. She then explained about celiac disease and as she spoke, it hit me: she’s describing me. Exactly.

I immediately stopped eating wheat and I immediately felt a good 50% better, within a matter of days. After years of feeling 100% lousy all the time, 50% was something to celebrate. Problem solved, right?

Well, sort of. My blood test for celiac came back borderline, but the blood test is known to be unreliable. I was scheduled for endoscopy a few weeks later, which the gastro doc and I were both certain would come back positive.

Except it didn’t. It revealed that I had a hiatal hernia, probably a birth defect and a plausible explanation for my lifelong inability to eat large quantities of food at any one time, but my celiac biopsy came back negative.

So she dismissed it as “IBS,” and sent me on my merry way.

~ ~ ~

I continued to eat gluten-free though, because I felt SO MUCH BETTER. Whole Foods had just started to open locations in Southern CA and gluten-free food was easy to find. I bought it all – gluten-free cookies, gluten-free bread, gluten-free chips, gluten-free pasta. I started gaining weight and my medical team though this was EXCELLENT NEWS. Soon I was 135 pounds – more than I had ever weighed in my life – and starting to feel not so great again. I was sent to a nutritionist, who said that my grain-heavy, gluten-free, low-fat vegan diet was practically TEXTBOOK PERFECT except for one thing: calcium. She gave me a huge scare about osteoporosis (“especially with your small build”) and encouraged me to add low-fat dairy. I told her that I had been diagnosed at birth with milk allergy, which had proven, through teenage rebellion and eating pizza to be like all the other kids, to not be of the deadly variety, but that I thought dairy was gross regardless and couldn’t imagine myself eating it. She told me to eat cheese and yogurt, as the lactose was converted to something else in the manufacturing process. When she learned I was a coffee drinker – black, at the time – she said to put cream or half and half in it, as both were almost pure fat and thus had no lactose.

Her scare tactics worked and I did as I was told. I added cheese to my usual beans-and-rice lunches. I put half and half in my coffee. I continued to feel lousy most of the time, but not quite as lousy as I had felt when I was 89 pounds – my stomach still felt like hell, but I no longer had the neurological symptoms from the vitamin deficiencies. I also had outgrown all of my clothes. Alarmingly quickly, I should add.

~ ~ ~

I moved in with a significant other around this time. Seeking out special food for me and normal food for him proved to be a bit of a chore, so I fell off the gluten-free wagon and went back to eating a somewhat-standard American diet. I think there was a part of me that secretly hoped eating gluten again would get my weight back down. I started feeling worse, but ignored it, because (a) I had been told that I was negative for celiac, and I believed it, and (b) I hadn’t really felt all that great off gluten anyway. I still had all the usual abdominal symptoms that had led me to seek medical help in the first place – the vitamin deficiencies were gone, but not much else had changed.

I lost my job. And my health insurance. And continued to get sicker and fatter.

Moderation: just another word for “denial.”

In my last post, I briefly touched on the relationship between PA and insulin resistance – in short, that it can be caused by the potassium depletion from the PA. I’ve been thinking about this quite a bit lately – what it meant for me during the 10 years that I had untreated PA, what familial link there may be, and on a larger scale, where it might fit in to the nation’s diabetes epidemic.

In January 2003, when I was at my sickest (and my highest weight, a whopping 173 pounds), I was diagnosed with two of the three: insulin resistance and metabolic syndrome. With a strong maternal family history of diabetes and heart disease, this would have been enough to scare me into action, but I was lucky: I was also diagnosed with fructose intolerance at the same time. The end result of following a diet for fructose restriction was essentially a low-carbohydrate diet – no sugars, no grains, no fruits – which enabled me to lose 50 pounds in less than three months. I’m pretty certain that this saved my life – at the very least, it reversed many of the symptoms of metabolic syndrome – and thus, I am a big believer in carbohydrate restriction as a preferable treatment (over drugs) for insulin resistance.

My mother, age 86, is the middle child of seven siblings, and is the only surviving one except for the youngest. Of the five who have died, four of them have died from diabetic complications or heart disease (or a combination of both, as all were diabetic). All were obese. The youngest living sibling is also obese and diabetic. The only two of the seven not to become both obese and T2 diabetic are my mother and the one sister who died young (a suicide).

When one begins the diagnostic process for PA, there are a lot of questions about family history. I don’t have a lot of information, but based on what I was able to put together – mainly, the above paragraph – I came to two conclusions: first, while I have no proof of this and never will, I suspect that every one of the siblings above who died of diabetic complications had an adrenal tumor. And, second, if one becomes diabetic as an adult, the best things one can do are remove all sugar and grains, processed foods, and “eating for entertainment” from one’s diet; and get up off one’s butt and move. I am convinced that I reversed my insulin resistance early on because I refused to remain sick and fat (even if this could not reverse the tumor!), and I am convinced that my mother’s apparent immunity to these diseases is due to her lifelong habit of walking everywhere (she never learned to drive).

~ ~ ~

Even if my adrenalectomy has, at least for the time being, rescued me from the danger zone of developing diabetes, I remain extremely interested in the subject, and I have RSS feeds set up for news items about the disease. So even though I don’t watch television and could care less about celebrity chefs, the recent hubbub about Paula Deen’s diabetes diagnosis came across my radar. And I’m siding with Anthony Bourdain here – she really is the most dangerous woman in America.

Why? Not because she advocates eating bacon cheeseburgers sandwiched between two glazed donuts, but because she advocates moderation (WARNING: link with sound!). Loudly and emphatically. Sorry, Ms. Deen, but I’ve got news for you:

Moderation doesn’t work. And you are living proof of it.

First, moderation goes against human nature. We’re hardwired to survive, and survival, historically speaking, means beating famine. So, when presented with food, we eat. Simple enough.

And, second, as I noted above – when one has metabolic derangement, carbohydrate restriction can work wonders. And that means complete and total restriction of all processed foods, sugars, and grains. That doesn’t mean “once in a while,” that doesn’t mean “have a cheat day,” that doesn’t mean “a little bite won’t kill you.” Because it will. Maybe not today, but slowly and painfully, it will kill you. If you don’t believe me, do a Google image search for diabetic foot (WARNING: disgusting images!).

Moderation, in my opinion, is just another word for denial. The minute one is diagnosed with any form of metabolic derangement, be it insulin resistance, T2 diabetes, or metabolic syndrome, one’s life changes. Or perhaps more accurately, one has to change their life – that is, if one wants to take control of the situation and get healthy again. The choices are simple:

  • Stop “eating for fun” – that means no cupcakes, no ice cream, no fast food, no corporate chain restaurants serving plates of ConAgra with a side of Monsanto – and get up off your butt and move.

OR:

  • Practice “moderation” and expect to be feeling crappy, popping pills, and getting fatter and sicker for the rest of one’s life.

There are only two choices. It’s up to you.

~ ~ ~

If you have been diagnosed with insulin resistance, pre-diabetes, or metabolic syndrome, read this first. It’s a pretty decent overview of what each of the terms mean.

Once you have done that, head over to Blood Sugar 101 and read every word that Jenny has written. Chances are it will contradict everything your endocrinologist tells you. And, unlike what your endocrinologist tells you – moderation, lots of whole grains, and many expensive drugs – it will work and you will feel better. It’s worth a try, isn’t it?

Food.

I have not been able to eat much since the surgery – in addition to the hiatal hernia I was born with, it feels as if the residual CO2 has filled every possible space in my abdominal area, and I have felt uncomfortably full all the time since Thursday. But I also know that I have to eat something, just a little even, so on Monday my dear friend C accompanied me on a little shopping trip to Whole Foods.

Making the right dietary choices has been critical to managing this disease from the very start. Because of the insulin resistance (IR) it causes, I am extremely sensitive to carbohydrates; as I often jokingly say, I look at a potato and I gain five pounds. Because sodium exacerbates water retention and increases blood pressure, I avoid restaurants, prepared foods, and any situation in which I can’t know with full certainty that my food has been prepared without any added salt.

Except – now I don’t have to watch sodium. Before I left the hospital, my surgeon told me not to worry about that any more. In fact, some doctors actually encourage patients to eat high sodium at all meals for a short time post-adrenalectomy, in order to get the remaining adrenal to “wake up.”

As for insulin resistance, some studies, such as this one, posit that IR in PA patients will reverse within 6 months of treatment, whether surgical or medical. This is a little less cut-and-dried than the sodium bit; no one can really advise me as to when/if I can be more lenient about carbohydrates.

So, it’s back to a routine I’m already all to familiar with: my body, my science experiment.

I’ve already lost seven pounds since the surgery, so I’m not all that worried about weight gain (and its undesired dangerous side effects of increased fasting blood sugar and elevated BP) in the short term. In addition, when I’m not feeling 100%, my favorite food to eat is rice. So, I’m allowing that. In addition, since my digestive system seems to have gone to sleep, I’m giving myself a rest from all animal proteins for the time being – no chicken, no fish, no eggs until I feel a little more normal. Nothing against these foods; they just feel a little heavy for me at the moment.

My first day out of surgery, my total food intake was a half-cup of basmati rice. The next day, a half avocado. The day after, another half avocado. Which brings me to Monday, my day of shopping.

I began my day with 1/4 cup of plain, whole-milk Greek yogurt. Around noon I actually started craving “real” food for the first time since the surgery – specifically, Indian food. I pondered this a bit and while it was definitely curry that was on my mind, it was also salt that I was craving. So, when we got to Whole Foods, I decided to do something I rarely do – check out the prepared food offerings. And when I saw Curry Garbanzo Tofu soup, I got brave and took home a small container. More a stew than a soup, it went over a bit of jasmine rice and was absolutely the most delicious thing I had tasted in many months.

I half expected my usual symptoms from sodium intake to come on overnight – headache, irregular heartbeat, weight gain. I also expected to feel like I was going to crash from the carb intake within 40 minutes of eating, even though I only had a small portion. But – nothing. In fact, I was down another pound in the morning.

Tuesday I had my first post-op follow-up with my nephrologist. I told him what the surgeon had said, to not worry about sodium, and that I felt that it was still unwise. I also told him what I had done, to no ill effect. His advice was that this was entirely appropriate – don’t go out and eat a bag of potato chips, but don’t stress out about every bite. I can do that.

I’m not entirely certain where all of this will take me – as mentioned before, I have hopes of being able to cut back on the animal protein as much as possible since I hate cooking it and don’t enjoy eating it. If the insulin resistance truly does go away, and Every Single Carbohydrate doesn’t go straight to my belly, perhaps this can be done. I know that my dietary intolerances to lactose, fructose, and gluten are an entirely separate issue and will not likely be influenced by my lack of a bad adrenal; this I don’t mind, as I very strongly believe that sugar and gluten are not “good” for anybody, and would never go back to eating them. So, as I continue to decline your offers of cookies or bread, please don’t take offense.

Right now, I’m just excited at the possibilities that have opened up just knowing that I can eat something that somebody else made. And thrilled at the prospect of Indian and Thai and Japanese food being a part of my life again.