One Year Anniversary

Anniversaries are milestones; they represent time passing. It’s hard to believe that it’s been a year since Bunky’s celiac diagnosis.

A year ago in April we looked at our daughter’s pale, drawn face and (finally) realized something was wrong. The bones of her cheeks jutted out sharply, the curve of her chin chiseled down into a point. A bony unhappy heart shaped face. Circles darkened the hollow space beneath her eyes.

B has celiac, but we don’t know it yet.

Her body had also changed dramatically over the winter months. I thought she was just “thinning out” – what did I know? Nothing apparently. Toddler bodies do thin out, but they don’t become emaciated and wasted. Toddler bellies do tend to bulge, but they should be soft to the touch, not hard and distended. It makes me want to cry writing this, even a year later, with a now healthy vibrant daughter with strong long limbs and a full rounded face. But a year ago I missed all the signs. My husband did not. He noted her belly and weight loss with cautious concern while I waved away his worries. “Oh, she’s fine,” I’d say, “She’s losing her baby fat.”

But then spring began and a stomach bug that caused incessant and painful bursts of diarrhea persisted beyond three weeks and my husband put his foot down. “Something is wrong,” he insisted. “Let’s call the doctor.” I started to spout my old mantra, the “everything is fine” mantra that I inherited from my father, both of us deniers of illness, which is ironic since my mom, his wife, had a severe and undeniable disease, multiple sclerosis, that ultimately took her life. Maybe it was because of that undeniable disease that we both railed against deniable ones, things like stomach bugs and thinning limbs, everything is fine, we insisted, but it was NOT.

I remember strolling her home after a failed attempt to go to music class. She slumped unhappily in her stroller as I chirped ideas from behind. How about the bookstore? The playground? She clutched her stomach. Her voice was small and quiet. “I feel sad,” she said. I stopped and knelt beside her. It was the “I feel sad” that made my own stomach drop. Something was wrong, and my poor dear girl who was just a few days shy of turning three, was attempting to translate her pain and discomfort by telling me how sad she was.

It broke my heart.

I called my husband and told him, “Maybe we should call the doctor.” Even though earlier I had dismissed the idea, saying they would tell us it was just the stomach bug that was going around. “Call them now,” he said.

We called, we went, and our usually low key “everything is normal” doctor sent us straight to the ER. Needless to say we were terrified. After an excruciating afternoon of tests they sent us home with no answers, other than the relief that it wasn’t a tumor or anything life threatening, and the recommendation to see a gastroenterologist, which we did and then shortly after that received our diagnosis: celiac. A word that moments before barely meant a thing, now was leaden with significance. It was a life long diagnosis. It was a disease.

The ER trip happened the day before my daughter’s third birthday. At her party her two best friends ate up the homemade sugar cookies with pink raspberry frosting, which Bunky refused. She perked up to play with her pals and ride her bike, but wouldn’t eat much of anything. It was sad to witness. Days later we knew why. All the food we offered her – bagels, crackers, and cookies – GLUTEN – was making her sick. Her little body didn’t want to eat anything, because nothing felt good.

The day we found out about her celiac we cleaned out our pantry of all things gluten and went food shopping, informational print outs clutched in our hands. To say it was challenging those first days, weeks, is an understatement as anyone newly diagnosed will tell you. But the day she stopped eating gluten, her diarrhea stopped – this after three weeks of up to eight times a day – and within weeks the spark returned to her eyes, and nutrients and fats filled her starving body, giving her bursts of energy and a glow we hadn’t seen in months.

Now a year later, I can scan a grocery store in minutes and pick out our favorite GF items without batting an eye. I am confident reading food labels and preparing healthy meals for our family.

Looking so happy and healthy in April 2012

But…

There’s always a but, right?

I think our first year was mostly survival. Our priority was getting Bunky healthy while learning everything we could about celiac and the GF diet. All this occurred right at the start of my pregnancy with our second child. There were days we forgot I was pregnant because we were so consumed with our daughter.

Then in the fall, preschool began and along with some major separation anxiety (it was her first drop-off program) we also had to contend with food concerns and soon-to-be-new-sibling issues. In November little guy arrived and life got even more complicated.

Now, six months after his birth, I have come up for air. The celiac anniversary came and went without fanfare, certainly without celebration, but leading up to it I felt the stirrings of a sadness I didn’t have time to feel during our rollercoaster year.

Yes, I’m grateful that B was diagnosed quickly with a disease that has a cure !! No medications, no operations, just a GF diet. How wonderful, truly. But – there’s that pesky word again…

But I’m sad that she has a life-long illness. One that we – and she – will have to monitor daily. Eating is not just functional. Food is SOCIAL, the center of pretty much everything. Birthday parties, holidays, family gatherings, school functions… and that’s just what we’re dealing with now at age four. What about during adolescence and beyond? Pizza parties? Sleepovers? Camp? What about going on dates? Parties? What about BEER?

Oh forget it. I can’t think that far ahead.

Right now birthday parties and family gatherings are hard enough. Refusing people’s offers of unsafe food, pushing away a tray of gluten pretzels from my daughter’s roaming hands, providing her with a different cupcake than all the other kids at birthday parties.

Exclusion – it’s hard to see it happening already at such a young age. I wonder if some of her social anxiety is tied up with eating differently than her peers, of having to be careful NOT to share.

Ultimately, I believe these things will make Bunky a stronger, more empathic person, but it won’t come without a price. Sadness, confusion, anger, and who knows what else. Normal emotions to be sure, but hey, sue me if I’d rather wait a few years for those feelings to come with such frequency over the seemingly mundane: food.

I honestly can’t watch another kid stuffing their face with a gorgeously frosted cupcake without thinking that B will never be able to do that, at least not without planning ahead.

But – and here’s where I force myself to look at the glass half full, something I’ve always had trouble with – I’ll deal with all of that if she stays healthy, and I’ll help her deal with it too. It won’t be easy, and some days it might make me cry (privately) and it might make her cry (not so privately) but we’ll work through it together.

Because this is our life, now.

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23 thoughts on “One Year Anniversary

  1. What a stunning transformation for your little girl! It’s a transformation that so many have experienced after going gluten free, but I never ever get tired of seeing them. She is so beautiful and clearly so healthy now! 🙂 You’ve done a great job with keeping her gluten free and well, Mom! While I don’t think some of us ever totally get over the loss of certain foods for our children when they go gluten free (and often more free), it gets easier over time, especially as they learn to live with it like it’s no big deal. 😉 It’s like any other difference in life. When we teach our children that it’s part of who they are and something to be accepted and even celebrated, then they project that and live that.

    Would like to talk to you more via email, but couldn’t find contact info. Thanks!
    Shirley

    • Hi Shirley, thank you so much for your lovely comment! I’d love to know how you found my blog. I have to be honest and say I didn’t know anyone was actually reading it 🙂

      It definitely has gotten easier this year, regarding food, but harder too in some ways as my daughter becomes more aware that she is “different” than other kids. But like you said everyone is different, and this is just our version!

      My email is danaheatherschwartz@yahoo.com if you want to contact me.

  2. My daughter (now 6) was diagnosed almost 18 months ago. I have felt exactly like you. Thankful for a diagnoss but sad that this is lifelong for her. I am glad I found your blog!

    • Thanks very much for chiming in. I’m so glad you found me! I’d love to know how you did because I didn’t know anyone knew I was out there 🙂

      I totally get how it is to feel both grateful and sad about celiac. I spend a lot of time going back and forth between those emotions, and I think it’s okay. So your daughter must have been a little over 4 when she was diagnosed. Did you have a hard time figuring out what was wrong with her? Luckily for us it was only a few months, though it sure felt like longer.

      I hope you all are adjusting to GF as best you can and that she is healthy and thriving.

      -Dana

  3. I am so glad to be directed to your blog from Shirley (GFE). What an amazing transformation of your little one!

    While my daughter isn’t celiac (I am gluten free)… she has a severe peanut and egg allergy. Your post brought me to tears.. because I’ve been there. We are there. It’s been just over 2 years since V was diagnosed (she was just 14 months).. and it’s almost harder right now, emotionally, because she is starting daycare this week.. and will be starting junior kindergarten in the fall. We are also now doing more social events, as she gains more friends. And I feel the same way.. when I see other kids eating with no care in the world.. I get angry and sad (privately, of course). I know we have some tough times coming up through the years (there is no indication the peanut allergy will be outgrown.. it’s gotten worse each year).

    I loo forward to following your blog.

    • Hi Jacqui, thanks so much for posting your comment. I really feel for you and your family regarding your daughter’s peanut and egg allergies. Those are intense and require SO MUCH vigilance. We have a close friend who just discovered her three-year-old has a peanut allergy. After doing just a little research before visiting them, I was shocked to discover how pervasive peanuts are in the food we eat. School is definitely another level of challenge with food allergies… Do you have one of those peanut allergy bracelets for her? Those can be fun for kids to wear and helpful for teachers. Also, I follow this really sweet lunch box blog by a woman whose daughter has a peanut allergy (and also is gluten free). Here is a link, it may be helpful when preparing lunches and snacks for your little girl.
      http://keeleymcguire.blogspot.com/

      Good luck with daycare and junior kindergarten in the fall. Bunky starts pre-K this fall and I also foresee a new slew of challenges coming my way…

      -Dana

      • thanks, Dana.. and good luck to you as well! I am going to check out that blog.. I think it will be an awesome help!

        We do have a bracelet that is a struggle to keep on.. V is not a girly girl.. LOL. But we are working on it. :).

      • Ha! I bet even if the bracelet was pink, Bunky’s favorite color (she’s quite a girly girl, though she does balance it out with a love of matchbox cars), she’d probably tear it off in minutes. Must be that short preschooler attention span. Good luck keeping it on if possible! Let me know if you’re inspired by Keeley’s blog. I made her Chebe bread pizza muffins and they were great!

  4. My 7 1/2 year old son was diagnosed shortly after his 6th birthday. His story is somewhat similar to your daughter’s, except he actually went into metabolic acidosis because he was producing large amounts of ketones from essentially starving. He was hospitalized for two days, and despite a barrage of tests, would have still gone home without a diagnosis had I not pushed the pediatrician for an answer to what was causing his abdominal pain. (He wanted to just prescribe pepcid). I still struggle with the social impact. I have had to remove other foods to address health issues such as fluid in the ears impacting his hearing and now joint pain and swelling. So he is gluten and dairy free, working on removing corn and nightshades. I understand the sadness that you feel.

    • Hi there, thanks so much for posting your comment. I’m really sorry to hear how traumatic your son’s illness was for you and your family. The reality of our children’s bodies starving because of undiagnosed celiac, especially regarding your son who was so severely ill, is heartbreaking! Good for you pushing for more tests regarding his abdominal pain. I’m so glad that your son is now healthy, but I obviously can relate to the social stuff. It’s hard witnessing your child suffer no matter to what degree, and even when their bodies are (thankfully) thriving, the emotional impact and potential fallout is still a reality, and it’s hard on us sensitive mamas (and our sensitive kids, at least in my case!).

      I love your handle by the way, Crunchy Nurse!

      Hope to hear from you again. Good luck with the other eliminations. There is a pretty good site that is gluten and corn free (not sure about nightshades). Maybe check it out – http://www.adventuresofaglutenfreemom.com/

      -Dana

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  10. Stumbled across your blog through Pinterest. I started with GI problems after the birth of my first child 6 years ago. I went through almost a month of horrible stomach issues and lost weight. I learned to “deal” with the symptoms for years. They would flare up every now and then. Then 2 years ago I was told I had irritable bowel syndrome and given medication to help the symptoms. A year ago our lives became super stressed as we moved 10 hours from family. I felt sick, all the time. I hated food, and felt like I was in a brain fog. Then after this past Christmas I got really sick, I lost nearly 15 lbs rapidly which put me at a whopping 84 lbs. I couldn’t keep any food in. Ended up at the ER and was told to cut out gluten. 4 months GF now and I feel better than I have in years. I pray that my children don’t have to live with this and I can’t imagine how hard it must be to help a small child learn all the ins and outs of a gluten free life. I can totally relate to all the posts on your blog, thanks for sharing!

    • Hi Hannah, I’m so glad you found me and thanks for letting me know it was through Pinterest, I’m always so curious 🙂 Are you on Pinterest? If so, let me know your name so I can follow you!

      Thanks for your comment and sharing your story. It sounds like you’ve had quite a rough time of it, though I’m glad you have a diagnosis now and that you’re finally feeling better. Isn’t it amazing how quickly the body begins to heal (at least outwardly) when you cut out gluten? That’s how it was for our daughter, anyhow.

      I sure do hope your kids don’t have it. Have you had them tested via blood draw? You could also check their DNA. If they don’t have either of the 2 genes then they can’t get it – but if they have one, or two, it’s a possibility (though not definite). We are thinking of having our son genetically tested before we go for his 2 year blood draw. I am hoping my son doesn’t have it, but if he does at least my daughter will have some company 😦 Right now I feel SO guilty every time I buy him a gluten cookie when we’re out…

      So glad you can relate to my blog, that is really why I write (besides the obvious venting aspect!).
      -Dana

      • Yes, I am on Pinterest, Hannah Reid. It was actually your play dough recipe that I had pinned :). I am amazed at how much something I was eating was making me so sick. Just this weekend I had my first “glutening” since I went GF. Found out it was from barley in a face moisturizer I started using. Crazy! I had been so diligent to check food labels and totally hadn’t thought to look at lotions, shampoo, etc. We are planning to get our daughters tested for celiac. I really wonder how many people have it without ever receiving a diagnosis.

      • I’m glad you like the play dough recipe! It’s a good one.

        So sorry you were glutened 😦 It’s a doozy after feeling good. Interesting that it came from a beauty product. That’s something we’ll need to keep a closer eye on when my daughter gets older…

        Good luck with your daughters! Fingers crossed they are in the clear.

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