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Gluten-free, Wheat-free living

We wooed each other with food. From the early days of our courting, we cooked for each other until that dance we did around the kitchen table became part of the people we are and the people we would become.

This blog is about the pure pleasures of preparing and sharing a meal: the planning for it, the making of it, the taking in of the smells, the turning out of a humble (or spectacular) spread, and the table talk that issues from each of us as we share.

Tuesday, November 22, 2011

The Risks of “Going Gluten-Free” Without Testing

I’m usually the rebel, the one who breaks from tradition and thumbs my nose at those huddled in the protection of the crowd, but when it comes to just “going gluten-free” without testing for celiac, I’m against it. Here’s why:

In the last few years, many integrative and functional medicine specialists have jumped on the gluten-free band wagon, citing its anti-inflammatory properties. Some of these practitioners have blogged about it and urged their patients to “go gluten-free for a few weeks to see how you feel.”

True, the gluten-free life is less inflammatory, but there are oodles of inherent problems with attempting to “go gluten-free for a few weeks to see how you feel:”

1. “Going gluten-free” is not simple. It requires a great deal of education and a whole-hearted commitment, not a half-hearted attempt to try it for a few weeks “to see how you feel.” For one thing, you probably will see minimal change, if any in just a few weeks. It can take up to a year, and for some, even longer, to really feel the benefits of the gluten-free life.

2. It takes months, maybe even 3 to 4 months, to really get your arms around the gluten-free life, to learn where gluten hides, to fully grasp cross-contamination concerns, and to stop accidentally “glutenizing” yourself. You need special ingredients in your pantry, special gear in your cupboard, special cooking skills in your repertoire, and some extra do-re-mi in your wallet, because GF food is expensive.

3. You need a support system to go gluten-free. Oh sure, you can do it on your own, but why would you want to? It’s so much easier with the camaraderie of other people who have been there. You can learn from their mistakes/wisdom and avoid reinventing the wheel.

4. To be accurately tested for celiac disease or gluten sensitivity, you must be consuming gluten regularly. So let’s say you’re one of the few who happens to feel great after a few weeks gluten-free? To know whether you have celiac disease – an autoimmune disease – or simply gluten-induced sensitivity, you must return to eating gluten regularly for tests results to be accurate. If you’ve been feeling rotten, and you’re suddenly feeling great, would you be willing to resume eating gluten for the sake of science?

And, of course, there is some disagreement as to “how much gluten” constitutes enough gluten and how long you must be consuming it to provoke a reaction. Some say 4 pieces of bread a day for at least a month. But do they really know? I don’t think so.

5. It’s important to know whether you have celiac disease or gluten intolerance. Why? Because one is an autoimmune disease with potentially devastating results for undiagnosed people. Autoimmune disorders tend to travel in clumps; once you have one, it’s likely you may develop others. You don’t want to unnecessarily flare your immune system. And the risk of other serious illnesses, including breast cancer, lymphoma, and osteoporosis, increases markedly with untreated celiac disease. And, you owe it to your children/family to inform them if you have an autoimmune disorder, because their chances of having celiac disease increase to about 1 in 20 if you have it. (We currently believe the incidence of celiac disease is about 1 in 100.)

6. It’s easier to be resolute if you’re certain about your diagnosis. It sounds strange, but often, if you’re not sure you have a problem (as in a confirmed celiac-disease diagnosis), it’s easier to justify cheating on the gluten-free path. And if you have celiac disease, you should not cheat! According to my immunologist husband, a speck of gluten the size of the period at the end of this sentence is all it takes to incite an immune reaction in a 10,000-pound elephant with celiac disease. Think of what that much gluten could do in a human body if you really have celiac disease!

7. Still feeling lousy? Still want to try the gluten-free life? Talk to your healthcare practitioner about being tested before you stop eating gluten! It’s the EASIEST way. I cannot tell you how many people I counsel who have tried going gluten-free, and then asked to be tested – not realizing the importance of continued gluten ingestion through testing. (It’s also always stunning to me to realize how many healthcare practitioners do not grasp the importance of being on gluten for test accuracy.)

As a result, these people have received inconclusive test results. They’re healthcare practitioners can’t confirm a celiac diagnosis or gluten intolerance, yet these folks still feel terrible and suspect they have issues with gluten, but faulty test results overshadow reality. They’re now stuck. Do they return to gluten (knowing they feel terrible on it?) or just go gluten-free and live with not knowing?

8. Of course, you can still decide to “go gluten-free to see how you feel.” And, you may decide you feel much better without gluten. But you will never really know the true source of your problem (autoimmune or sensitivity) unless you’re accurately tested.

For me, the rebel, knowing always trumps not knowing.

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