Celiac Disease Six Months Later

Approximately six months ago I was diagnosed with presumed adult-onset celiac disease. Presumed, because after removing gluten from my diet the marked contrast in my general health was so extreme you couldn't pay me enough to go back to eating bread and other gluten-containing products again. Because a diagnosis of celiac disease can be so overwhelming, I thought a look at how things are six-months out would be useful to those just going through the process now.

First, I've spent the last six months coming to the conclusion that "adult-onset" is a complete misnomer for what has happened to me. I have had some version of pretty much every celiac symptom there is for my entire life -- from mood disorders and weird nerve pain to chronic indigestion and issues with my skin, hair and teeth. I finally just got sick enough in a way that was actually alarming to get diagnosed and do something about it.

Next, my health is amazing. Although I have to consume nearly ridiculous quantities of food to get the nutrients and calories I need, and I'm still very thin, I am building muscle appropriately for the first time in my life -- despite the fact that I danced very seriously as a child and teen. For the first time in over a decade I'm doing significant physical activity including fencing lessons and dance classes adding up to thirty hours a week in some cases.

Eating appropriately is largely not a challenge. The biggest ordeal hasn't been avoiding gluten, but rather discovering what foods my intestines are still too damaged to tolerate. Things high in fiber like corn and spinach, I've only been able to add back imto my diet slowly, although they are perfectly safe for those with celiac. I've also discovered I have, like many celiacs significant lactose intolerance and an inability to digest casein properly., which doesn't limit my food choices so much as require pre-planning.

The pre-planning is annoying. I had bringing my own bottles of condiments to restaurants, or just having to put lemon on sushi if I forget. And while I'm never embarrassed to ask hard questions about food to wait staff, it cane be a bit trying to explain to new or infrequent dining partners about why I must. I am not a fussy eater nor am I trying to avoid carbs. Please don't assume someone with dietary questions at a restaurant is on a weight-loss regime and then voice your approval or disapproval of it; it may be a lot more complicated than that.

Emotionally, going on the gluten-free diet has stabilized my moods and my focus, and largely I have a pretty black sense of humor about the whole thing which is entertaining for all. Sometimes though I will have the realization that I can' eat a food that I don't consume frequently but is emotionally important to me -- this includes lots of the groceries I used to order from Australia or some seasonal foods like hot cross buns and king cakes (I've found good gluten-free gingerbread).

Finding replacement foods for gluten-based products remains a bit of constant trial and error. Glutino products are, as a rule, very good, although some have more fiber than I can yet tolerate in concentrated packages. Their frozen pizza though is the only pizza I've found worth my time, and their cookies and pretzels are awesome. I also do well with Everybody Eats products and have discovered raw food cookies as a delicious, very healthy and very safe snacking option.

Of course, I live in New York, where my options are myriad. I haven't yet traveled since my diagnosis, but this year will be doing several domestic trips for conferences and next year will be going to Sicily. How hard that proves to be, remains to be seen, but the idea of being foiled by bread is too stupid to even entertain.

Honestly, the hardest part of this six months later is my anger, not just at how long it took me to get a diagnosis once I got seriously sick, but that this was going on my whole life and that it was easier for people to just assume I would always be sickly, or have lank hair or swing into terribly black moods for no reason at all, other than consider the possibility of this fairly common (at least 1 in 133 in the US) genetic disease, for which children in Europe all routinely tested.

On the plus side, however, talking about my ordeal has at least created more awareness in my immediate circle of friends and with those who have read some of my articles about my experience with celiac disease. That helped others get diagnosed, avoid unnecessary medical procedures and fear at not knowing what is wrong, has certainly been worthwhile.