I’ve never been a “food diary” type of gal, and that hasn’t changed despite my Crohn’s disease. But I have a good enough memory to realize that when I have a flare (or a “bad day”, as I describe it to my mother and aunties), it involves one or more of the following things: 1. bagels 2. cheese sandwiches on focaccia 3. heaps of pasta with veggies 4. pitchers (or rather, carafes) of beer.
When I was first diagnosed, a big fear was that I wouldn’t be able to achieve and maintain remission without a significant change to my diet. I’m sure this would be a fear to most people, but for me it was compounded by the fact that I already have a special diet, having been vegetarian for more than half of my life. (In fact, I was convinced that my diet of whole grains, veggies, and moderate dairy had set me up for a lifetime of digestive health. JOKE’S ON ME!!)
Renouncing my vegetarianism (which was embarked upon for a variety of totally unexciting reasons, so don’t bother asking) was not really on the table. So any major overhaul of my diet would be a hardship to say the least. In light of my recent observations, I’m not ready to say that I can’t have gluten, but it makes me realize that I have to be careful about what I eat and that too much wheat may be a problem.
Being sick has done to me what I thought little could do, which is suck the fun out of eating. I was knee-deep in gustatory Valhalla a few weeks ago and smack in the middle of washing down risotto with Whales Tale Pail Ale I thought to myself “crap. I have Crohn’s”. A few days later I was having near-hallucinatory nausea and vomiting for two nights in a row.
I’m not going to get all “don’t take good health for granted!”, because I never took it for granted during my hale and hearty twenties, so I’ll give you the benefit of the doubt and assume you don’t either. In fact, I remember marveling with my mother at the astonishing good health not just of myself but of my entire large extended family. I valued my health and I enjoyed it.
Today I heard an interview with Nora Ephron replayed on WBUR. In it she reads from one of her books, quipping “I regret not wearing a bikini the entire year I was 26”, going on to exhort “go put on a bikini and don’t take it off until you are 34”.
I’ll do you one better. NEVER take it off if you don’t feel like it. Life is too short and too difficult to avoid the things that make you feel good. So if a two-piece is more comfortable for you than another suit, like it is for me, then by all means wear it. If you like running in tight little pants (another of my slightly absurd favorites), then go for it and run your little heart out.
I cannot control what others delight in. I cannot even control what nature allows me to delight in. But when given the opportunity to throw caution to the wind, I choose delight.
I’ve hesitated to comment, but when I read your post, I realized I could immediately think of at least two vegetarian (or mostly vegetarian) celiacs I “know” online. And if I really went through the list, I’m sure I could think of others.
I do, however, understand the frustration. As my body has struggled to recover from the damage of a very advanced stage of active celiac disease there are other things besides gluten which, while not causing an autoimmune response, are still things my body can no longer tolerate well. Each time I have to restrict my diet further simply in order to feel okay, I sometimes want to scream. It’s no fun.
However, since you noticed the connection to gluten, it sounds like you’re already very much aware of the high incidence of celiac and non-celiac gluten intolerance in people with Crohn’s. I can’t imagine getting all the way to a Crohn’s diagnosis in this day and age without being tested for celiac disease somewhere along the way, so I’m sure that’s been excluded. Unfortunately, there’s no test for food intolerances, so a trial exclusion and then controlled reintroduction is the only way I know to isolate them. (Do the symptoms go away when you remove that from your diet? And do they come back if you eat it again after the trial period?)
A medically restricted diet is not sunshine and roses. I’m not going to pretend it is. And food is intertwined in almost everything we do in social and work situations. I never noticed how true that was before my diet was restricted. And I still miss some of the things I can no longer have. “Real” beer is high on that list. On top of the incredibly strict celiac diet (a little cross-contamination my not even be noticed by someone with a gluten intolerance but will spark an autoimmune response in someone with celiac disease), I can no longer really tolerate dairy and oats (and by that I mean the certified gluten free variety) — both of which I’ve loved my whole life. And it looks as though red wine is questionable. I was also the person who could eat anything, would try just about anything, and who liked most of it. I absolutely hate now having to think, research, and be careful about every bite I take.
But at the end of the day, I just don’t want to be sick anymore. That wins out. And so I try to focus on other things. (But I do not wear a bikini!) I meant to be encouraging. I don’t know if I succeeded. But I do wish you the best. A more restricted diet is not fun, but it’s got to be better than days of “near-hallucinatory nausea and vomiting.”
Peace and good luck.
Thanks a lot for taking the time to respond. I have been reading your posts much more carefully now that I am a fellow food-scrutinizer. I have not yet found a lot of consolation in this new health adventure, but the fellowship of others on the same journey is a big help.
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The gluten-free diet i am taking is quite tasty and so i am much delighted. `
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Switching to a gluten-free diet is a big change and, like anything new, it takes some getting used to. You may initially feel deprived by the diet’s restrictions. However, try to stay positive and focus on all the foods you can eat. You may also be pleasantly surprised to realize how many gluten-free products, such as bread and pasta, are now available. Many specialty grocery stores sell gluten-free foods. If you can’t find them in your area, check with a celiac support group or go online. ^
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