Skulls in the Stars

I never thought I’d be happy to be diagnosed with a disease.

I’ve teased my fiancée for some time for having a similar attitude. She has had chronic, misdiagnosed medical problems for quite a few years. Her frustration is palpable, and understandable, but I couldn’t help but tease her gently that she often would seem genuinely delighted at the possibility of having a problem.

But a diagnosed disease can be treated, which is where the excitement comes from. I was recently diagnosed with celiac disease, and it was truly a relief.

If you aren’t familiar with celiac disease, you probably should be: it’s more common than you would imagine. It is a genetic autoimmune disorder of the small intestine in response to wheat gluten. In short, your body reacts to gluten as if it is a foreign invader. Your intestine becomes a battleground, and it suffers collateral damage as a result. This collateral damage can result in malabsorption of nutrients, leading to all sorts of nutritional problems.

Symptoms include chronic diarrhea, fatigue, and dental enamel hypoplasia, all of which I have had. The diarrhea is often misdiagnosed as irritable bowel syndrome (IBS), as was the case with me. In fact I have to h/t the fiancée for the proper diagnosis: she was tested for celiac and, although her tests came back negative, she suggested that my troubles sounded very much like the disease.

A little historical note of interest: the name ‘celiac’, or ‘cœliac’, derives from the Greek κοιλιακός (abdominal), and was evidently first diagnosed and described by Aretaeus of Cappadocia in the first century C.E. Here is the relevant passage from The Extant Works of Aretaeus, The Cappadocian (Classics of Medicine Library, 1990):

On the Cœliac Affection

The stomach being the digestive organ, labours in digestion, when diarrhœa seizes the patient. Diarrhœa consists in the discharge of undigested food in a fluid state; and if this does not proceed from a slight cause of only one or two days’ duration; and if, in addition, the patient’s general system be debilitated by atrophy of the body, the Cœliac disease of a chronic nature is formed, from atony of the heat which digests, and refrigeration of the stomach, when the food, indeed, is dissolved in the heat, but the heat does not digest it, nor convert it into its proper chyme, but leaves its work half finished, from inability to complete it; the food then being deprived of this operation, is changed to a state which is bad in colour, smell, and consistence. For its colour is white and without bile; it has an offensive smell, and is flatulent; it is liquids, and wants consistence from not being completely elaborated, and from no part of the digestive process having been properly done except the commencement.

Wherefore they have flatulence of the stomach, continued eructations, of a bad smell; but if these pass downwards, the bowels rumble, evacuations are flatulent, thick, fluid, or clayey, along with the phantasy, as if a fluid were passing through them; heavy pain of the stomach now and then, as if from a puncture; the patient emaciated and atrophied, pale, feeble, incapable of performing any of his accustomed works. But if he attempt to walk, the limbs fail; the veins in the temples are prominent, for owing to wasting, the temples are hollow; but also over all the body the veins are enlarged, for not only does the disease not digest properly, but it does not even distribute that portino in which the digestion had commenced for the support of the body; it appears to me, therefore, to be an affection, not only of the digestion, but also of the distribution.

There’s more description, but I think that will suffice. At this point most readers are wondering why I’m sharing so much graphic detail about my digestive tract. I consider it a public service: celiac is surprisingly common. It is estimated to affect at least 1% of all Indo-European populations, but is completely unknown to most people.

How does one get tested for celiac? The standard is a blood test searching for sprue-related antibodies (‘the sprue’ is another name for the disease). If that test is unclear, a biopsy of the small intestine can be done to directly check for celiac damage. In my case, the blood test came back as a ‘likely positive’; I opted to try a gluten-free diet on my own, without the biopsy, and found an immediate and remarkable improvement in my digestive health. I went from having a minimum of two bad attacks a week to having none, except when I eat out and inadvertently eat gluten-contaminated food.

Gluten contamination is the real difficulty with celiac. The only ‘cure’, as it is, for celiac disease is adherence to a strict gluten-free diet. Once you try this, though, you face a rather disturbing reality: practically everything is laced with gluten!

Obvious culprits are bread, crackers, cereal and pizza crusts. However, gluten is used as a thickening agent in many salad dressings, in certain ice creams and soy sauce. Derivatives of wheat and barley and rye can also trigger an autoimmune reaction, including vinegar. Even more troubling, very little gluten is needed to trigger a reaction, which means that food which is not wheat-based, but was processed on machines which also process wheat, can also cause a reaction. My first day at the supermarket post-diagnosis was a daunting one, I can say.

Fortunately, many resources exist to help one develop a gluten-free diet. There are websites such as www.celiac.com and the Celiac Disease Foundation which provide advice and even recipes for celiac sufferers. Furthermore, gluten intolerance is becoming more recognized by both restaurants and food producers. The chain Nothing But Noodles will help customers pick out gluten-free options (usually rice noodles). A number of restaurants in my area are explicitly labeling gluten-free menu options. In the supermarket, Amy’s Kitchen produces a surprisingly tasty collection of gluten-free frozen dinners, including a gluten-free pizza with a rice crust which is pretty good. Varieties of gluten-free salad dressing and flour are available in the store and explicitly labeled as such. I haven’t tried the flour yet, but the dressing is quite good.

For me personally, the discovery of my celiac disease has been a net positive. Not only am I free of genuinely painful and disabling symptoms, celiac is forcing me to stay away from fast food restaurants and forcing me to think more carefully about what I eat in general. And, thankfully, a good NY strip steak is 100% gluten-free!