Tuesday, March 23, 2010

Happy GF anniversary to me!!

Last week, March 16th to be exact, was my one-year gluten-free anniversary. I would have written last week, but ironically, the day before my anniversary, I was glutened! For the first time in like 6 months and in my own home! It definitely brought me down a few notches and I just wasn't in the mood to celebrate. I was all ready to get sushi that night and really celebrate the great accomplishments I have made in the past year, but after feeling super terrible the day before, the last thing I wanted was raw fish and to celebrate food.

I ended up cooking fresh veggies and tempeh over pasta for dinner the night before, and it turns out the tempeh (by Westsoy) I used must have had gluten, because within 45 minutes, I was in so much pain, I wanted to go fetal. It felt like my insides were on fire and took me 2 rounds of pepto, many cups of chamomile tea and a good night's sleep to feel semi-comfortable. Extremely frustrating when I have been so careful for a year and to have this happen in my own home after doing great for so long.

Anyway, back to my belated celebration...it seems like just yesterday I was so overwhelmed and constantly reading the forums on celiac.com and trying to get my head wrapped around my new life. Because, let's face it, that's what it is...an entirely new lifestyle. Without those wonderful people on the forum I would never have been able to get through it. I remember reading when people reached their 1-year mark and being so in awe, thinking I would never get there. It was definitely frustrating in the beginning, and sometimes I would be at public events or dinner parties and have to go to the bathroom and just cry because I felt so deprived and like an alien in the room. But since those early months it has become almost second-nature.

I used to get so depressed wishing I could just eat what was put in front of me, no questions asked, like all "normal" people. I wanted to go to a restaurant and just order and be done with it. I hated to feel like I was missing out, I hated to feel like people felt sorry for me, I hated that people didn't take me seriously, I hated that I had to be extremely careful and sound like a broken record to anyone involved in preparing any food for me. I was angry and bitter, and just plain sad. I am someone who has always loved food, and frankly have always been very careful about what I eat...I have always checked labels and avoided products with long lists of ingredients that I didn't understand, avoided overly-processed foods, and tried to eat as natural as possible, and grew what I could myself, so I just didn't feel like it was fair to be given this new obstacle. Like how could I be doing everything "right" and then be inflicted with a disease surrounding food!? I was really in a miserable place. I never knew anything about food intolerances or allergies, but I did know about reading labels, so at least I had a handle on that, but it did take a while to fully understand all of the nuances of cross-contamination, and am still constantly learning.

And the reactions I received from people was in itself enough to send me in tears. The worst was, and still is, people who think I am overreacting, that say 'you can have just a little...', or 'I know someone with celiac and they still...' Or some people who as soon as I walk in their house and offer everyone something and turn to me and announce 'oh, but I don't have anything for you,' which is perfectly fine, because I am not expecting anyone to cater to me, but why announce it and make me feel uncomfortable and like some kind of leper???

Ok, I am going to move away from the negativity, because I no longer feel negative and angry. I can now go to a dinner party and not feel deprived, I can walk by the bakery section in the grocery store and not think twice, I finally feel comfortable with it. Of course I miss certain things, because who am I kidding, it sure would make life easier, but I am ok with it. For one, it is not worth the discomfort; and 2, it is not worth knowing it is damaging me. Though, I must say, before my diagnosis when I ate gluten happily with no pain, it sure doesn't seem fair to get pain now when I cut it out, but I guess it serves as my own personal indicator for when I know gluten entered my system.

People will ask me if I feel better after going gluten-free, and it is difficult to answer, because I didn't think I had any symptoms before going gluten-free. I definitely didn't have the obvious, typical symptoms, nothing that stood out that something was wrong. I didn't have stomach aches or diarrhea. Actually I had the opposite, my system just wouldn't go, and finally it works! Though looking back now I can see that the anemia was a sign as was not being able to 'go'. I have had extreme anxiety since the birth of Z, and I must say, I do feel much more relaxed after going GF. I am not sure if it is the actual absence of gluten in my body, or because I was so anxious that I would have something wrong with me, and then I found out I do, and so far, I am still alive! When I say I had extreme anxiety I should explain where it came from, since I feel like this is also a piece of my puzzle.

(warning, this next paragraph is a bit of a detour into pregnancy)

In the 36th week of my picture-perfect pregnancy I started getting awful mid-back pain. My OB said it must be a strained muscle and sent me to physical therapy. I was going daily and it just got worse, and I was living on Tylenol and hot baths for the pain, and it did nothing. I was up in the middle of the night in tears and short of breath. I would call the OB on call and explain to them and say I was going to the go to the ER, and they would tell me that it is 'normal' pregnancy pain and the ER would send me home. And what did I know, it was my first baby. All I know is that I wanted a morphine drip and never to be pregnant again. I went in for an appointment and again they said I was fine (though they said this with no bloodwork), I had no idea if this was my heart, lungs, or what, but something was up. I would take super hot baths, even though I knew it was not a good thing to do when pregnant, because it was the only way I could sit still for 5 minutes. I stopped going to work, because I could not sit in one place, I could not go out to eat, I could not sit still period, I had no appetite, I stopped eating, I lost over 5 pounds (which is not good when you are pregnant), I felt horrible. On a Friday, when I was exactly 38 weeks, I demanded I be seen and by my OB, not one on call. We went in, and after they finally did bloodwork, they determined I had pre-eclampsia and later found out, the pain was actually my liver and I had developed severe pre-eclampsia and HELLP. I had heard of it, but knew it was rare, so never really thought of it as a possibility, and I didn't have the common symptoms. No swelling, no headaches, no spots in my vision, no high blood pressure, no protein in my urine, but this was what I had! I was told I was not leaving without a baby, and quickly, by emergency c-section, we had our baby girl. We had no camera, and our phones were out of power...we had no clue we were having a baby that day! Z was healthy at 4 1/2 pounds, but was definitely smaller than she should be at 38 weeks, so it was determined that she had IUGR, so obviously I had the pre-eclampsia brewing in me for quite a while, but the doctors did not catch it, even at one of the top ranked hospitals in the country! So my point is....I am sure that this experience "turned on" celiac for me, but was it celiac that was underlying and caused me to have a greater chance of developing pre-eclampsia/HELLP. I have desperately wanted another baby, but am terrified to go through this again, and risk Z loosing her mommy. I told myself after being GF a year, I will revisit getting pregnant and meet with yet another perinatologist for an opinion if and before we should TTC (try to conceive). I am really hoping that with gluten out of my system, and my increased awareness on getting my health in top condition I would be able to have a successful pregnancy...as long as I get on it soon, I am not getting any younger!

So after this whole pregnancy experience, I was so paranoid of my health. The idea that my body failed me as it did when I was pregnant was a constant fear, and I developed panic attacks on a regular basis. I would wake up on a lovely weekend morning thinking I had some terrible disease and obsess about it. And any thought of me actually having something sent me into a day-long panic where I could concentrate on nothing else. It was honestly crippling. I went to therapy, yet refused medication, and therapy did little to help. So it is amazing that once I went gluten-free, I don't feel that anxiety or panic anymore, or not nearly as often. It is a great freedom! Now if I could just cure my fear of flying (though being married to an Englishman means I can't avoid it)!

This past year I have met so many wonderful people, and learned so much. 13 months ago, I would never imagine this is where my life would be, but I don't regret it at all. And if I can provide even one person with a piece of knowledge that I have learned then I feel really great. Sometimes I surprise myself with the knowledge I have retained from so many amazing sources out there. And most of all, I have to thank my super supportive family, even my 5-year old Z will warn me when there is gluten in something and when she plays kitchen she is sure to offer me only gluten-free cakes!

Happy anniversary to me!!


  1. Congratulations on the one year mark!!
    I just had my gluten free anniversary last month.
    It's amazing how it just seems "old hat" now. I hope it does for you anyway.
    I'm actually grateful for this condition, as it has brought me into a whole new world where limitations can create freedom....freedom from pain, bloating, eczema, mental fogginess, freedom from a future of even more health problems.
    It's opened my eyes to a world of eating as few non-processed foods as possible, even those that don't have gluten.
    It's brought me back to how we are meant to live and eat. Simply. Purely. Tastefully. Creatively.
    Not dump out from a box, heat and eat.
    Anyway-I'm rambling!! Congrats again on your anniversary and cheers to decades more!! :)

  2. Thank you so much! I agree with everything you said..can I just say 'ditto' ;) If i can do something now to avoid worse things in the future, I am all about that! And healthy food is always a plus!

    Congrats to you too!! Yeah to us!!!

  3. Happy GF anniversary to you!!!

  4. wish there was an edit option :/ meant to say "eating as few processed foods" NOT non-processed foods!
    i guess you figured that out though!

  5. Happy Belated Anniversary, Anne! I was just reading some of your recipes, and came across this post. I am so happy that you are feeling well and have a whole year of being GF to celebrate. It's amazing to me that you have learned so much and been able to positively impact others in such a way after being diagnosed relatively recently. I thought you'd been GF for much longer, given how well you've educated yourself! Kudos to you!

    Also, your anniversary date is one day before my daughter had her biopsy to confirm her Celiac diagnosis. March 17th...I'll never forget that day, and the moment I saw my precious two year old being wheeled away from me on a gurney at Children's Memorial. My heart has never ached so much. Ugh...the grief. But a year later, she is growing again, her broken bones are healed, she has the energy to run and play like other children her age, and we have learned to adjust our lives to a new rhythm. -A slower pace, which requires more preparation and mindfulness, but also a simpler one. I agree with Heather's comment that "limitations can create freedom". I am so thankful to have a diagnosis for Eleanor now, so she will be free from years of unnecessary suffering and aware of a healthier approach to food and life in general! Congrats and thank you for sharing your story. The connections we've made this year have been invaluable as we navigate our way though our new gluten free life together. : )

    Jen KH from NCHS

  6. Jen,

    Thank you so much for your kind words. That must be so difficult to see your Eleanor being wheeled away, but thankfully it is really such an easy procedure. I was terrified at first, but now look at it like a nice long nap.

    It is great that you have such a positive outlook at well, it really doesn't have to be a loss, but rather gaining a future of making better food choices and being more knowledgeable about what we put in our bodies, in general.

    Did you ever find out if anyone else in your family has it?