C is for Celiac Disease (I guess)

It’s been less than a month since my Celiac diagnosis, so it feels sort of strange to write about it in this format, as though it’s already part of my history, but when I think about it I believe this…this, what? This disease – although it doesn’t feel so much like a disease – has formed a significant portion of who I am. For those of you unfamiliar with celiac disease, it’s an autoimmune disease wherein your body doesn’t recognize, or, perhaps a better way to put it, is your body really really hates gluten, the protein found in wheat, rye and barley, which gives things like bread their elasticity. Its symptoms can’t really be characterized because there are just so damn many of them, some of which I’m going to write about here but if you are interested in learning more you can go to celiac.com, which is a stunning wealth of information.

For most of my life I think it is fair to say I could be characterized as a somewhat anxious, high-strung person. I am more prone to worry than most people I know, and while much of that worry comes, I think, from my rather stereotypical first child, desire-to-please personality, a good portion of that worry has always been focused on my body and how it is, or is not functioning, to the point where other people viewed me as and I felt like a true hypochondriac. Some people move through this life with bodies rather impervious to the various mechanations the environment can wreak on it – but I am not one of those people. Examples:

If leaves are falling from a tree a mile away, I will break out in a rash from the one mold spore that caught a breeze and landed on my doorstep.

I get pink eye if I even look at a public pool where children have played.

For years, any sort of cold or flu or crud that was going around, I caught, and caught massively – while other people would shrug off the virus I would be out of work for a week. I do have to admit, though, that working in hospitals for so long has strengthened me in that regard…I don’t want to jinx it but I haven’t been that kind of sick since moving to Pittsburgh.

Food, reliably and regularly, has made me sick, all different sorts of sick – from classic upset stomachs to brain fog so thick I couldn’t add two plus two to heartburn that felt something akin to a chemical spill, and none of this even touches upon the overwhelming anxiety I so often experience.

In the last eight years (I believe my most upsetting symptoms began in 2001 while we were living in Wheeling, West Virginia) I have gone to the doctor for chest pain, stomach pain, rib cage pain, persistant, pushy rashes, general malaise and the just general feeling that something was wrong. I came away from the doctor with diagnoses of general anxiety disorder, panic attacks and just generally existing as a highly-strung individual. I also came away with lots of prescriptions for drugs to help with all of the above, most of which I never filled because I was convinced that if I just struck on the right combination of eating, exercise and relaxation I would be able to control the anxiety beast.

At one point, one of my doctors diagnosed me with a soy allergy, and I avoided studiously and fastidiously anything with soy. My nutritionist thinks I will be able, now, to eat soy just fine once I am properly healed.

Here is the thing, I guess. I remember going to slumber parties as a teenager with my closest girlfriends. We would gorge ourselves on pizza and breadsticks and brownies before moving on to whatever the hell it was we talked about – boys mostly, undoubtedly, but somewhere in between the festivities and falling asleep I would have these just awful panic attacks – panic attacks that included nausea so debilitating I couldn’t move. Sometimes I would share these attacks with my best friend, M, who would bring me wet wash clothes and talk to me until I fell asleep, and we both assumed (I think) that these attacks were just my nervous personality, showcasing itself in new and exciting ways.

I could continue listing a hundred different examples…how during graduate school I suffered the worst insomnia of my life and would literally stare out the window of our apartment for hours, fixated on seeing the sun rise over the horizon because then, at least, I didn’t have to pretend to sleep; how I never fully embraced trips with S. because at some point I was guaranteed to feel unwell, which I now realize is because of the cookies or pasta or beer I was enjoying and not because I am some nervous homebody who can’t stand to leave her nest; how even when doctors promised me I was just experiencing anxiety and stress I could never see that diagnosis within myself…I never felt that diagnosis was accurate, for me.

Over the course of the last decade, there were moments difficult enough that I considered not even attempting to try having children, because no child deserves a mother who thinks she is dying every month or so.Β  At times, I thought about leaving S. not because he was unsupportive – he was more supportive than anyone has a right to expect but, as we all know, he rocks the free world, but because I was sure he deserved a wife who felt well, physically and emotionally.

But, you know what? A lot of that is over, now. Oh, I will still get pink eye if I share a public pool and I have no doubt cheap jewelry will always make me break out in hives, but even in the first few weeks of eating gluten-free, I can feel such a difference…a difference that avoiding soy or dairy never gave me. It’s going to sound stupid, but I feel happy – and it’s not like I’ve felt unhappy before, but what I feel is stabilized…if someone at work doesn’t like my writing, it isn’t the end of the world; if a song comes on the radio I particularly love, I turn it up and dance (hence the continous re-watching of the Beyonce seen in Glee a few weeks ago). The overwhelming sense of urgency I felt for so long has slipped away and in its place is a feeling I can only describe as mellowness, patience. Gladness. I am sleeping for long stretches…eight or nine hours at a time. When I told this to my mom she said “Well, honey, that’s a normal amount of sleep. What’s so special about that?” I had to explain to her how I rarely, if ever, got a full night’s sleep before now.

Right now I feel like I’m going through a period of healing. As I mentioned, I’m sleeping more than I ever have. I’m learning what I can and can’t eat and, equally as important, I am trying to teach myself new behaviors – a headache is not a brain tumor, a cramp in my leg is not a blood clot. I am learning to not overreact to every little thing. I’m looking at what is left of 2009 and looking at it as a time of recovery, not just recovering from the physical aspects of celiac but from the emotional ones as well, and I am looking extraordinarily forward to 2010, when I hope to be much less defined how I feel and much more so by what I accomplish.

And that is C, which is for Celiac.

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23 Responses to C is for Celiac Disease (I guess)

  1. Dorothy W. says:

    Wow — that’s wonderful. I’m so glad you’ve figured out what’s going on with gluten and can now correct it. How wonderful to have a great recovery to look forward to! I’m glad you’re noticing big changes already. It must be great to be able to make sense of so much that has happened to you that seemed mysterious before.

  2. Elaine says:

    Huzzah, Honey!!!

  3. shoreacres says:

    By the time I finished reading, I was (a) exhausted, (b) ecstatic for you, (c) unbelievably grateful for the good health I’ve enjoyed, and recommitted to doing the things I need to do to preserve it.

    Your description of the way things feel now reminds me of what it’s like, after being really, really sick with the flu, to suddenly realize you feel better. It’s that “I forgot how good this feels” feeling. May that feeling increase and increase, every day.

  4. Belle says:

    Oh good, I’m not the only one who thought something was terribly terribly wrong with me at age 25 when celiac hit me upside the head. It was amazing what a few days, then weeks, then months, then years, on a gluten-free diet did…and less amazing when I get cross-contaminated food at a restaurant and feel like I am back to square one (but it only lasts a day or so and then I’m back to my new-self :).
    BTW–researchers are working on pills and potions for celiac too…I check online with NIH occasionally to see if I’d be eligible for a trial to help get this figured out.
    It’d be great to eat pizza and drink beer with folks at a local joint again but until then it’s easy to make a great gluten-free crust by hand, add ingredients from the farmers market…and not feel sick!
    Good luck!

  5. What a relief it must be to have a diagnosis and the correct one at that, as well as a way forward that is clear and drug-free. What you describe sounds shattering though, Courtney. I think it is astonishing how you have kept your sense of humour and carried on, despite feeling so awful.

  6. Amanda says:

    What a great post! I feel like we’ve gone through a lot of similar experiences with trying to figure out what is going on with our bodies. My poor husband, I’ve thought/done the same to him and he’s so supportive. In allergy testings…I’m allergic to pretty much everything but oddly enough gluten and soy weren’t one of them. I’m still trying to figure out my demon. Wish me luck!

  7. auntjone says:

    Wow. Just WOW. I am so glad you got an accurate diagnosis even if it took years to uncover. Congratulations and good luck with the “new” you!

  8. Amanda says:

    It’s great that you’ve found an answer. I think physical conditions like coeliac are probably especially hard on people like yourself who set high standards for themselves and have a lot they want to achieve. When your body lets you down it’s maddening. I really would like to see medical science and practice progress to a point where people don’t get fobbbed off with diagnosis like anxiety and depression for treatable physical conditions.

  9. kimhaasdesign says:

    So happy you’re feeling so much better. It makes me wonder how many people out there taking drugs for depression, anxiety, etc… would benefit from some major dietary changes.

  10. lvmg (Lizzy) says:

    I’m so glad things are looking up. It sounds like you’re going through an exciting time of renewal.

    How did your doctor arrived at the diagnosis? I wonder it took so long.

  11. litlove says:

    Actually, it makes me really mad that the doctors took so long to figure it out. Believe me, my heart goes out to you retrospectively, as chronic fatigue has a very similar range of symptoms and we are always being told it’s all in our heads. (Although I hear that research may finally have located the virus that causes it – which would be real progress). I am so delighted that you are feeling better – you have a proper cure and your body knows it.

  12. Stefanie says:

    How horrible it took so long for doctors to figure out what was wrong but how wonderful that now you know you are feeling better already. Completely changing your diet is not easy, but once you get past the initial difficulties it all becomes no big deal. May your healing continue and good health be yours.

  13. Steph says:

    What you describe sounds horrific…and you never spoke about it…I never would have had any idea that all that was plaguing you! I am so happy that you found the right diagnosis…what a relief that must be. I’m excited for you, Courtney!

  14. Meriah says:


    cheers to good sleep, a healthy healing body and soothed mind.

  15. LK says:

    Amazing. Glad you found out the cause . Check out Elana’s Pantry website!http://www.elanaspantry.com/

  16. Courtney says:

    Wow, you all sure do come out with the love. THANK YOU. I asked S. if he thought this post was as intense as it seemed to you guys because it actually didn’t feel intense to me, so I should clarify…I haven’t been walking around feeling like shit every single day – just more days than I thought right. I think a lot of people walk around feeling off and not knowing why – I am lucky mine is correctable with diet. And let’s not hate too, too much on doctors…they are committed, after all, to helping us heal. Most of them represent their profession very well. But seriously, I really appreciate the love and I am looking forward to moving on from here. You all are AMAZING.

  17. Emily Barton says:

    I wonder (not for the first time) if I have Celiac Disease…

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  19. Holly says:

    I was diagnosed end of Sept, and wow, all the changes, emotionally and physically, I understand exactly what you’re talking about.
    I plan to have my daughter tested – because alot of what you say here reminds me so much of her problems with anxiety & sleeping the past couple years, that I feel that she must have it too.
    Emotionally I have found alot of ups & downs..feeling great, but also missing things I can’t have anymore. But now I feel I have more of a taste for food, and I’m really developing an interest in food & cooking.

  20. Kate says:

    I was diagnosed in May of this year. I had 12 diagnisis’ of bipolar disorder, generalized panic disorder, ibs, fibromyalgia, etc to name a few taken back by my doctors once I totally improved my health by going GF. I have had symptoms for over 16 years and every doctor (except my family dr and my new GI dr) said I was just depressed and a hypocondriac. I sound just like you. I FEARED night time cause it was always so awful, panic attacks, nausea, insomnia. I was fine emotionally until recently. I am mourning the loss of gluten containing foods. I’m so tired of “I’m sorry” from people around me as they bite into a hamburger or slice of pizza from around the block. My worst fear is that I have passed this disease of inconvience on to my kids. I don’t want them to feel the way I do, physically or emotionally. I know that if they have it, we will be just fine. But like I told my hubby, right now I want to be mad and sad about it. I’ll be fine in a while and I will NOT give up. Even though I feel better, I still don’t feel good. I think I had alot of damage and its going to take alot of time to heal if I heal at all. I’m glad to hear you are doing well. Remember that you are not alone in this battle and that I believe there will be big things happening in the world of gluten. Look at the links to autism, celiacs, etc.

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  23. TheOtherOne says:

    Its “K is for KSY” – you may want to check that out. KSY = Kaal Sarp Yoga. Its not a disease but a mysterious and untreatable syndrome. Fortunately it auto treats with time but oh what a time that is!! It tests you to the core! You either make it or break it by then.

    I can write about my conditions exactly what you’ve put down. My problems started around 2002 when I was 21 and it got worse with time. But I’m getting to know myself better now, hopefully I’ll make it! πŸ˜›

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