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.”

Seven months (and then some) post-adrenalectomy.

The seven-month mark since the surgery has come and gone, and I don’t have a lot to add beyond my six-month report other than two cliches: (a) I still have no regrets, and (b) time flies, doesn’t it?

Instead of blood pressure and potassium, I’m finding myself far more focused on the nutrient malabsorption problem that is the likely culprit behind my vision issues. The Vitamin A supplements I’m supposed to be taking, like nearly everything I ingest that isn’t chicken, eggs, rice, spinach, or nuts, were making me sick. As in, stay close to the restroom sick. Use your imagination… So, in frustration last week I asked my doctor why not instead focus on keeping the nutrients I get from my food *in* me, rather than just keep taking more nutrients.

He did a quick bullet-pointed rundown of things that can cause malabsorption syndromes, the obvious ones being celiac disease and lactose intolerance. Check, and check – both present and accounted-for, as well as fructose intolerance, but I’ve been strictly gluten-, lactose-, and fructose-free for years. Why the sudden increase of symptoms?

On to the next theory: a bacterial infection, commonly known as SIBO (and getting a bit of non-scholarly press these days, making me an immediate skeptic, but still keeping an open mind). He wanted me to do a hydrogen test, which is how my lactose and fructose intolerances were diagnosed – and which, when I had it done in 2003, left me sick for two weeks afterward. No thanks. Instead he opted to go for an “empirical trial” of antibiotics – Xifaxan 550mg twice a day for 10 days.

The first day of the meds, I felt worse than ever. The second day – much better. And today, 4 days into the course of meds, my stomach seems to have calmed down more than – ever, really. As with most celiacs and others with food intolerances, I’ve had mysterious digestive issues my entire life, and this sudden feeling of, erm, inner peace is probably not something I’ve ever experienced before.

Unfortunately, this brings up more questions than answers, really. The fact that the antibiotic has done something to calm things down is pretty conclusive proof that I have some sort of bacterial infection; whether or not it’s officially SIBO remains unknown. Does that matter? I don’t know. Whether or not this is a permanent fix is also unknown; the SIBO info I’ve found online all seems to point toward repeated courses of antibiotics. Which I’m not thrilled about.

Besides antibiotic therapy, there are a few approaches to dietary intervention for SIBO: GAPS diet, Specific Carbohydrate Diet, and Low FODMAP Diet. Of these, the third is somewhat related to the fructose-free diet that I already follow, so I’m reading up a bit more on that. The downside for me is that all three of these rely heavily on animal products *and* home cooking – not my favorite combination, as I am the world’s most squeamish cook! Which means that really, nothing much will change – I’ll continue to live on chicken, eggs, rice, spinach, and nuts, but hopefully after the course of drugs is done, I’ll actually get some nutritional benefits from these things. Which is the whole point of eating, right? 🙂