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038 : health : food : wheat is complicated

A friend who is familiar with my recent, life-changing dietary restrictions asked me what he should do if his daughter complained about similar symptoms. I wrote this up to give him some background to consider.

As I note here, I AM NOT A DOCTOR, and am NOT giving you any medical advice: I'm just describing my basic understanding of what my own problems have been, and what the somewhat different problems of my friends have been, around wheat.

Until a few years ago, wheat was a delight for me, and was an important part of my healthy, whole-grain-containing diet. Now, under a doctor's supervision, wheat is only permitted to make minor guest appearances in meals. These comments do NOT mean to harm wheat's reputation: I'm just acknowledging that wheat no longer works well for me, and that we don't all respond to the same foods the same way. Your mileage may vary.

[Friend's name],

Sorry for the delay in sharing what I know about wheat sensitivities, and possible informal approaches to finding the cause of your daughter's digestive discomfort. I am not a doctor, and do not play one on TV, so I'll just share what I know from my own experience.

First: CELIAC DISEASE is pretty serious, and mostly causes gastrointestinal problems. Before allowing your daughter to go on a special diet to avoid gluten, you should get her tested. (See WebMD's Gluten Intolerance Against The Grain.)

With that out of the way, I want to make a distinction between an allergy and an intolerance. Informally, an allergy is something that triggers an immune system response (rashes, hives, trouble breathing); an intolerance may involve some other system in the body (abdominal pain, gas, constipation). Allergies can be tested for, usually by jabbing you with lots of needles (or taking biopsies): the site of the injection becomes inflamed if your system is allergic. Intolerances are determined by their symptoms: there are common lists of symptoms for most intolerances, though many triggers generate the same symptoms.

So, my friend in college who was allergic to milk would have his eyes swell up and would become congested (runny nose, coughing); my roommate who was lactose intolerant would suffer many unpleasant hours in the bathroom, and suffered cramps after having dairy products.

WHEAT ALLERGIES: I have known several people with wheat allergies. One went in for testing, and his systemic stress situation was so serious that his doctor kept testing him for HIV/AIDS. Ultimately, a new doctor put him on an elimination diet, and he was able to IMMEDIATELY identify wheat as the source of all of his allergies, rashes, aches, and other problems. After years of suffering, he received relief without medication in just DAYS!!! Wheat avoidance is tricky, because it is in so many things - even in soy sauce! So, it takes practice to eliminate it entirely.

WHEAT INTOLERANCE is one of the problems I now have. After my Aleve-induced intestinal bleeding ended, I suffered from extreme gastrointestinal distress and was nearly incontinent for several weeks. When I recovered, normally fine foods induced symptoms like constant food poisoning. After a couple unpredictable periods of relatively stability which made me think I had healed, followed by abject misery (especially during business trips, when things always seemed to get worse), I went to a gastroenterologist, who took some biopsies (to test for celiac diseases AND for something called Microscopic Colitis, which I have all the symptoms of: see Wikipedia on Microscopic Colitis). The results implied microscopic colitis inconclusively, so she suggested that I should try (a) conventional anti-diarrheals to improve my sleep, plus (b) limiting the foods that we know have certain carbs which would ordinarily be great for us, but which are hard for people with impaired digestion to manage. The tough-to-digest foods are put into a group with the nickname FODMAP, which stands for "Fermentable Oligo-, Di-, Mono-saccharides And Polyols."

Descriptions of FODMAPs are here:

I eliminated ALL of these foods from my diet for several weeks, received significant and almost immediate quality of life improvements, and then, tired of the constipation the diet causes, and eagerly-but-gradually added foods back into my diet. I learned that it takes 12+ hours for foods to pass through me (which is normal), and so it pays to add foods slowly, so you can really tell which food is causing trouble (it is your lunch, not your dinner, which causes trouble just after midnight!). Also, amounts matter: I can eat an artichoke heart, but if I have an entire bowl of them, I will have problems.

In my case, FRUCTANS, including wheat, give me abdominal pains and unpleasant bathroom experiences. I can have a slice or two of bread without much harm, but a few slices of pizza will keep me in abject misery. I also have trouble with other fructan containing foods, especially onions (!! they are in EVERYTHING!), garlic, cabbage, and asparagus. It turned out that I was suffering so much during business trips because I wasn't eating much wheat at home, but wheat is the center of most meals in Europe. I am also seriously sensitive to POLYOLS: a couple plums can ruin my day! Which torments me, because I LOVE plums. I am now also LACTOSE intolerant. This means I can eat hard cheeses (which have had the lactose removed naturally), but creamy ones send me running.

My digestion still gives me lots of grief, but at least now I can MANAGE it, and do well so long as I am doing all my own cooking (and so can cook without onions!). I also carry enzymes now which help me digest foods I eat away from home, which improve my experiences enormously. I can recommend some of those for mild cases of intolerance, if/when you like.

[End of note]

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(posted August 14, 2016 and refreshed February 2019)

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