kwix replied to kwix's topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)I am very busy and so only have time at the moment to say thanks so much for all of your replies. I am touched and impressed by such supportive, articulate responses.
kwix posted a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)I'll admit to being a bit confused and frustrated by my celiac diagnosis five months ago. First, I got tested on my 50th birthday physical exam. My doctor says my antibodies are quite high (I'd share them, but I don't know which numbers are most significant), so there doesn't seem to be any question that I've got celiac disease. Yet, while I read here and elsewhere over and over of people rejoicing at how dramatically better they feel after just one week or one month gluten-free (or conversely of eating gluten and becoming immediately symptomatic), the five months I have spent avoiding gluten have brought absolutely no discernible benefit or change at all to my life. I don't feel better -- or worse -- at all. Then again, it's not at all clear what needs improving. Yes, I have a few minor symptoms which might -- or might not -- be connected with celiac: I have some psoriasis and I have occasional leg cramps -- but so do large numbers of people; I also might (or might not -- there's no way to compare) have especially tight muscles -- but a lot of middle-aged people have achey muscles. Of course, the lists I've read of the possible symptoms of celiac are no help: they are so encylopedic that pretty much ANYTHING can be seen as a symptom. (And that makes me wonder: is celiac then like fibromyalgia or chronic fatigue, which probably have some real physical issues at their core, but which because of strong [cultlike?] advocacy communities, keep expanding the definitions to the point where anything and everything is a "symptom..."?) I guess my confusion comes from the fact that I was already in such a good state of health to begin with. In fact, I remember saying to my doctor at my physical that I didn't know age 50 would be so good or still feel so young and vital. I exercise daily, love vegetables, cook and eat my own fresh foods 5x week, abhor most "fast food," and in general avoid pre-packaged and preserved foods. (Partly because it's healthy, but mainly because that's what I actually like best.) And I have never really cared for wheat products anyway (which btw is why I asked for the celiac test), so I have tended to avoid the pizza, pasta, bread, sandwiches and burgers that so tempt others; I would usually only eat such things to be social, or if I had few other options (such as travelling). The good news is that such things are not difficult for me to give up. It's not even that hard to give up the occasional cookies or cake. (But--damn--I had only just begun to really like beer!) And let me stress that for five months I have been very rigid about my gluten-free diet, avoiding any exposure. I have cleared out multiple grocery bags of food from my pantry, and mail-ordered incredibly expensive gluten-free versions of staples. So I'm baffled. None of my experience seems anything like what I read on this site and on others. And this wouldn't matter too much, except for the fact that, after five months of strict adherence to this "no results" diet, I find myself growing seriously depressed. Partly, I know, this is because of the challenges faced by everyone on this forum. Having lived my life avoiding bread and pasta, I naturally centered my diet on Asian foods. I have of course purchased expensive gluten-free soy sauce, hoisin, etc. (but apparently no fermented black bean paste!) to cook with at home, but I never realized how much the once-a-week carryout from the Vietnamese/Chinese place and twice-a-month meals at my favorite East Asian restaurants added to my overall quality of life. But my depression is not so much about the food per se as it is about the narrow, crabbed way it seems I must lead my life now, forsaking much of the discovery and serendipity which always brought me the most joy in life. Let me explain: I'm a foodie living in one of the most exciting young U.S. foodie cities, full of new music and restaurants and breweries and art galleries, and I write for two food blogs. Correct that: wrote. I haven't written a word since my diagnosis; it's too painful. What once brought me joy -- trying out new things, being part of the foodie community (which also correlates strongly with the new music, art communities) -- is now a subject that brings only pain and despair. My very favorite thing in the whole world was to walk into some hole-in-the-wall ethnic restaurant and order something I could not identify, had never previously tasted. To now review only bland, inauthentic chain restaurants or "gluten free" foods would be like... being a blind art critic who writes reviews based solely on how the canvas of a painting feels, or a disabled architecture critic in a land without handicapped access, who can only look on the exterior of buildings from afar without ever getting near them. It's not giving up particular foods or tastes which is the problem. It's giving up... openness to life. It's not ever being able to just hang out with others and go where they go, exploring new tastes, sights and sounds. I realize now that being part of this foodie/art/music community -- and the prospect of "foodie" travel abroad (now also impossible) -- was how I was keeping myself young. I know that there are still other possibilities for new experience in life. But before my diagnosis, I felt a very young, vibrant, energetic 50. Now, after five months of this gluten-free, results-free diet, I just feel old and tired, and I care less and less about things. Sorry to sound so bitter and self-pitying, when I know that all of you deal with the same sort of thing. I've avoided writing for a long time because I was afraid it would come out this way. I'm normally a low-maintenance self-starter who is quite happy with setting my sights on the long run. But it's getting harder and harder to keep this up with such negatives and no clear positives. Any advice?