May 12, 2009 by Stephanie
We are a gluten-free family. I haven’t written much about our gluten free journey, because it hasn’t really seemed like it was my story to tell.
I am not gluten-free. I do not have celiac.
My four-and-a-half year-old daughter does.
We found out about a month before she turned two.
We’ve chosen as a family to all eat gluten-free when at home, out of respect for her, and to keep the house “safe.” There are times when gluteny stuff is in the house, and we try our hardest to practice safe food handling practices to keep her safe, both physically and emotionally.
When we moved to our current home, I needed to go back to work, and chose a teaching job where the kids could be with me. On paper, the job seemed “perfect,” but my little one started getting sick. She’d vomit sporadically, and did so for months–not a lot. A puke a week or so, and sometimes she’d go 2-3 weeks where she was just fine. This lasted probably a good 6 months, looking back on it. I blew off the random puking jags as her getting more germs now that she was in a child care setting. I ignored it the best I could—she was my second child, I figured I knew what was a real sickness, and what wasn’t. She never had a fever, she was gaining weight, she wasn’t lethargic, her disposition was good, etc. The puking and the tugging feeling at my heart that I was making her sick by putting her in a germ-laden environment on a daily basis finally got to me and I freaked out and quit.
The sporadic puking continued, with no rhyme or reason.
I finally took her in, two months shy of her second birthday. I was expecting to be told that I was overreacting–kids get sick, they eat boogers, everything’s fine, you’re making too much of this, etc.
Instead, our *absolutely fantastic* pediatrician listened to Adam and me tell our story, and nodded. She was very calm and said that she didn’t know what was wrong, and suggested that we see a pediatric GI.
I felt like I was sucker punched. I was not expecting to hear those words. I was not expecting to hear AT ALL that something could be wrong.
This is where I had a weird out-of-body experience. I DID NOT start googling. Instead, I stayed clear away from the computer and waited out the two weeks before we saw the pediatric GI.
He was like House. He spoke fast and was incredibly smart. Freaky smart. I trusted him right away. He suggested it was celiac, but ran a bunch of tests. I held her in my lap while the blood was drawn, and practically bit my tongue in half to keep from crying right along with her. It was a very tough day.
A few days later, Adam got the phone call that she had tested positive for celiac, and the GI began prepping us (mentally) for an endoscopy. Due to her young age, we were moved to the top of the list. She was scheduled for only about a week later.
I was to keep giving her gluten (poison!) so they’d be able to see what the villi was doing in her intestines (for those who have no experience with celiac, the down-and-dirty I’m-so-not-an-expert explanation is that ingesting gluten harms the villi (finger-like and hair-like projections or bumps in the lining of the intestine that absorb nutrients. Because of the autoimmune response in the body, gluten attacks the villi, damaging and eventually destroying them. They usually grow back completely after the GF diet has been started–thank you to Tabitha for this updated explanation)). An endoscopy and villi biopsy is technically the only way that celiac can be officially diagnosed. There is a LOT of debate about whether or not the endoscopy is a necessary procedure and my thoughts and feelings on this change daily, and sometimes hourly.
I spent hours upon hours on the internet during this time, researching and trying to learn everything I possibly could about celiac and going gluten-free. I also tried to convince myself that she was misdiagnosed, even though the blood test came back quite conclusive. The rest of the family had their blood drawn, and tested negative. I was in denial.
I was allowed to go with her into the operating room. 2 anesthesiologists were present, one a mom of three, who was so reassuring and calming to me. I was in scrubs, and carried her back. I held the gas mask to her face, and the other mom and I began singing Row Row Row Your Boat. She went limp in my arms, and two nurses escorted me out of the room and didn’t let go of my arms until Adam grabbed on in the waiting room.
The procedure was quick, and a nurse came out within 20 minutes to say everything was fine, and that the doctor would be out to see us in a few minutes. He came out, still wearing his hair net, and said that the villi was quite damaged, and that there was a white part in her intestines he wasn’t sure about. I asked what it was, and he answered, “I don’t know, so I took a biopsy. The nurse will come get you in a few minutes and take you back.”
And that’s when I lost it.
I walked away from Adam and started pacing the little waiting room. My mind went to every horrible case scenario I could think of: the make-a-wish foundation, having to tell my daughter that her sister had died, picking out burial clothes, and the funeral. In the course of about 45 seconds I had one of the most visceral responses I had ever experienced.
And then I heard her. I heard “Mommy.” I pushed open the swinging doors, Adam close behind. I heard her. She was waking from the anesthesia and was in a barred bed, like a cage, and had monitors hooked to her and an IV inserted into her foot. There were two nurses at her bedside, and they said something like “oh we were just about to get you.” They were nice, I’m sure, but all I wanted was to rip all those things off and out of her and to get out of there. and fast.
I scooped her up and rocked and rocked for what seemed like forever, but it was probably only a few minutes until she was fully awake and was pulling on her IV and saying “owie.”
And then it was done. The doctor came back and told us all the stuff I had already learned on my own about celiac and going gluten-free. We were scheduled to see a nutritionist. I questioned him about the biopsy and he promised me that biopsy is just a word doctors use when they need to see something better under a microscope and that it had nothing to do with cancer. I was so visibly upset he hugged me and apologized for making me think that and then he promised to not use that term again to a new mom without explaining. I remember nodding, but was too numb to respond.
2 1/2 years ago, I was not aware of what Celiac Disease was. I had heard of people being allergic to gluten, but I didn’t really know what that meant. I wasn’t aware what gluten was (it’s the binder found in wheat, barley, and rye). I didn’t know what symptoms people exhibited when they had celiac.
Things are different now. I feel like the general public has some contact with someone, somewhere, either in real life or virtually who has celiac, and knows a bit more about what it is and what to do about it. There are certainly more food products available, thank goodness, and the FDA has mandated that food companies begin labeling properly. There is a lot more to do, but I think the awareness has improved, and feel confident that with this increased awareness, good things will happen.
In the past few weeks Elisabeth Hasselbeck has released a book about her gluten-free journey, The G-Free Diet: A Gluten Free Survival Guide. I have not read this book yet, but am quite interested in doing so. I’ve placed an order with our library system—but it will probably be a few weeks until it comes in. I’m fascinated by the reviews, both on Amazon, and in the blogosphere.
update: I have now read the book. I really liked it, and would recommend it to anyone embarking on a gluten free journey for the first time.
A big part of the controversy stems from the title of the book—calling it “The G-Free Diet” seems a bit cutsey, and makes it seem as if this is a fad, not a mandatory dietary change needed to live a healthy life for those diagnosed.
The Celiac Foundation has also taken a negative response to the book, and posted this response on their popular list serve:
I am writing to call your attention to the current publicity surrounding the
new book, The G-free Diet, A Gluten-Free Survival Guide by Elisabeth
Hasselbeck, co-host of The View. While it is important to call attention
to celiac disease, the information must be accurate – the inaccuracies in
this book are potentially dangerous and detrimental to celiacs and to those
yet to be diagnosed if people self diagnose and start eating GF. Our mission
is to assist in getting people accurately diagnosed and the message in this
book could defeat this mission. It appears that this book is being marketed
as a fitness diet – eat g-free and feel so much better. Celiac is
incorrectly referred to as an allergy not an autoimmune disease.
The GF diet is the medically mediated prescription that controls the
condition for a diagnosed celiac. Several items in the book are misleading
and inaccurate and place further limitations on the GF diet. The
gluten-free lifestyle is a lifelong commitment for the diagnosed celiac, not
an option, not a fad diet – adhering to the GF lifestyle requires patience
and persistence. This lifestyle can not be trivialized.
Celiac Disease Foundation
Founder & Executive Director
13251 Ventura Blvd. Suite 1
Studio City, CA 91604
My friend Alison, who writes at Sure Foods Living, posted a pretty positive review of the book, stating that,
I think this is a really good guide for someone who has just been diagnosed with celiac disease or is just starting a gluten-free diet, or even for those that have been on a gluten-free diet for a while but haven’t completely mastered it yet. I am surprised I liked it so much. I may even start saying I am “G-Free!” Or maybe not.
which I found generous and interesting. Alison is who talked me off my ledge when we were first diagnosed and I turned to the internet. She emailed me back within an hour of my panicked plea for help and was so helpful in helping me to realize that my daughter was going to be okay. It helps that we live in CA, and pretty much everyone orders off the menu, but she really and truly was a calm, peaceful presence in the midst of a perceived chaos, and for that I will always be grateful. I hope Alison writes a book someday.
I actually just ordered this book in the past few days, after the author emailed me to let me know that she listed the crockpot site as a reference for gluten-free recipes. I haven’t received it yet, but Amazon says it’s on the way.
My thoughts? I look at Elisabeth’s book as a good thing, even though if there are inaccuracies. I think I look at it as any publicity has got to be good publicity. Although I consider myself a pretty aware person, a few years ago I would have liked to have seen Elisabeth talking about Celiac on regular day time TV. I think knowing the word would have helped me not be so freaked out by the word “disease” tacked on the end. I still and will always think that it is absolutely necessary to do your own research about anything that happens with your body (or your child’s), but just knowing that it isn’t such a secret thing anymore is a relief.
I like it that General Mills changed Rice Chex to be gluten free. I hope Kelloggs gets on board and takes the barley malt out of Rice Krispies.
If we need an Elisabeth to help lead the way, even with some inaccuracies, I’m okay with it. I’ll continue to learn and hopefully help others in my own way. I’d love to hear your thoughts.
For further reading: