Community

Posted on December 23rd, 2011, by Trina

I’m a big proponent of Buy Local, being involved in the community, shopping local, and from people I personally know. Sometimes it’s more expensive, sometimes it requires more than one store to get everything, but I’ve been happy with the level of customer service I’ve received, and I would rather support my neighbors than some fat cat in Arkansas or Minnesota.

For some time, my daughter has complained intermittently of her tummy hurting. It’s usually in the evening when she’s grumpy. Before she was 2, she would poke at her belly and twist her belly button. When she gets sick, she goes all the way and gets really sick, and has had to be hospitalized. We’ve mentioned it to numerous doctors, and at one point she was diagnosed with strep, and I’ve been told it’s her bedtime stalling technique.

A few weeks ago, she threw up after bedtime, and I figured we were in for a long night of cleanups. Nope, just the once. The next day she took 2 naps before 10am and was nearly unresponsive. I took her to the doctor (not her pediatrician, but a doctor who had an opening that day), and he said based on the way she looked and her history, he understood why I brought her in, but chalked it up to a normal childhood virus. By the afternoon, she had perked up considerably and was seeming fine. She’d be puke free for 36 hours and could go back to school in the morning! Er, no. Once again put herself to sleep by 6, after napping (voluntarily!) in the afternoon, and threw up. OK, no school. She was pretty subdued in the morning, but relatively normal by the time we picked up her brother from school. I was out of town the next 2 days for a work training. My husband reported she woke up fine both Saturday and Sunday mornings and then voluntarily napped and was pretty spent all afternoon.

Sunday afternoon, my husband called me. At work. Something he didn’t do when she drank a bottle of Tylenol. Something he didn’t do when she needed 4 stitches. She was on the bathroom floor, curled in the fetal position, writhing and crying unconsolably that her tummy hurt. He wanted to know if he should take her to the ER or if I had any other ideas. I suggested Motrin, as pain was the only complaint. Magic stuff, that Motrin!

I kept her home the next day, and she acted mostly fine, but based on the previous day’s incident, I took her back to the same doctor who had seen her on Thursday. He said while she looked perfectly fine bouncing all over the exam room, what she experienced the day before was Not Normal, but might not have an explanation. We could start running some tests, and could go crazy with the tests, if we wanted, but would start with some basic blood tests. He ordered a full metabolic panel and added a celiac panel, as well.

I thought we would have the results by Thursday. No dice. The following Monday, her pediatrician’s assistant called and told us that her celiac was fine, but her liver enzymes were high and they wanted to retest to double check if it was a fluke. We got a lab appointment for the next day.

Once again I took my daughter, and since it was now Winter Break, I got to take my son with us to the lab for a blood draw. Oh, and she got some of her childhood shots, too. It was a GREAT morning. She was so charming in the lab, they gave her one of the cupcakes that had been gifted to the office that day.

That afternoon, the kids and I went to the grocery store a few blocks away. They rode bike and scooter, I walked. The phone rang while I was walking across the parking lot. I’ll never forget the doctor’s words on the phone while my kids had split up and were heading to opposite entrances of the grocery store.

“The tests came back for celiac. She’s positive.”

Uh, what? They called yesterday and she was negative.

“Well, they only had one of the 4 titres back from the test, and that one was negative, but the other 3 are strongly positive, indicating celiac.”

Um. Hm. OK…

“I’m sending her to a pediatric gastroenterologist specialist in Sacramento.”

Erm, OK…

Celiac. I knew that was that gluten stuff that everyone’s talking about, and there’s signs all over the place for “gluten-free” in the grocery store. But what, exactly, does that mean?

The next day we got the first available appointment for the specialist. March 8. I called back to ask what the heck we’re supposed to do until then. I still haven’t heard back.

Armed with the interwebz and lots of friends, I’ve done a substantial amount of research in the past few days. I’ve learned that

  • gluten is EV.ER.Y.WHERE: toothpaste, chapstick, soy sauce, oatmeal, just about every convenience or prepared food, the list goes on and on and ON;
  • Celiac is a genetic autoimmune disease that turns the body against itself in the presence of gluten. The small intestine is damaged every time it’s ingested, to the point that the small intestine isn’t able to absorb nutrients, or even water;
  • there is no cure for Celiac Disease. The only way to manage it is a lifetime gluten-free diet;
  • many, many of our medical issues in the past few years could be attributed to CD;
  • it’s really really hard to give up something you love, and give away all the gluten contents of your cupboards and pantry;
  • it’s pretty easy to do it for your kid; and
  • as always, people are awesome.

The next step, in the medical world, would be to do a biopsy of her small intestine with an endoscope. Given her lab results, there is no way I’m waiting until March to schedule a biopsy for some time down the road. We briefly considered just having her be gluten-free, but after a lot of reading, thinking, and talking, it makes the most sense for us all to go gluten-free. It’s not fair for the 4yo to be ostracized in her own house. It would be a never-ending battle of what she could and couldn’t eat, and the majority of the bloggers (many of whom fall on the “Tinfoil Hat Spectrum” according to my husband) on this topic are concerned with even cross contamination of crumbs from a loaf of wheat bread on anything else. I can’t find medical information on how dire it is, but any gluten can cause problems. This means new cutting boards, a new toaster, new wooden spoons, and myriad other kitchen and food implements to keep us GF.

To say this has all been overwhelming would be an understatement. Not a day has gone by in which I haven’t had a crying meltdown over something. I love to bake, it’s something I love to do, and something at which I’m talented. I’ve shopped sales for 2 months for the best deals on flours and ingredients for our holiday baking.┬áThe kids and I made sugar cookies from a gluten-free mix. They tasted OK, but the texture was horrid.

I keep waiting for the doctor to call back and say “oh, sorry, just kidding, that was the OTHER kid we saw, your daughter is fine.” I was unwilling to admit that this was the New Way, and it would never again be the same. Finally yesterday, I cleared out the pantry and the cupboards of the obvious gluten containing items. Hundreds of dollars of pasta, flour, crackers, cookies, bread, sauces, the list goes on. I offered it all to our CSA farmers, who happily accepted. Today they stopped by and picked it up, along with most of the contents of our freezer. That blackberry peach pie that I made and froze from fruit that I picked? Has flour as thickener. It’s gone. All those meatballs, quick potsticker dinners, soups, gone.

A good friend stopped by to drop off presents for the kids right as I was finishing up this daunting task and she said “Hi, how are you?” and I burst into tears. She knew of the diagnosis, but hadn’t realized all the ramifications yet (I still haven’t!). She was very supportive and gave great hugs and went on her way with her errands. The CSA farmer stopped by and couldn’t believe his luck. As soon as he got home, his wife emailed me, overwhelmed with the variety and quantity of food. She forbade me from paying for our next 2 months of CSA groceries. My friend swung back by and dropped off 2 brand new cutting boards, and said she hadn’t been able to find a toaster in that brief time.

While I was picking up my prescription earlier for my sinus infection, I spoke with the pharmacist who knows my kids by name, and informed her of the diagnosis. She made a note of it and will make sure to have gluten free versions of any medications my daughter needs. I stopped by the local coffee shop for a cup of coffee and they offered to find gluten free foods to have in their shop. A very good friend across the country who shares my love of baking has researched the various gluten free baking options and put together a starter kit of items for us to try. Our CSA farmer is researching what she can grow and plans to get a mill so she can grind flours for us.

The list goes on and on and on. All of these people doing what they can for us, for no other reason than to help a friend or neighbor.

I am truly overwhelmed, positively and negatively, by the changes my life has taken in the past few days. My daughter has a lifelong autoimmune disease that has serious implications, but she has a community of people who love her, and us, and will help in any way they can to make this work.

Watching her scooter around the front yard, pain-free, happy as a lark, made it possible to watch our groceries leave with all the comfort, familiarity, and tradition they contained.

Please leave a comment

  1. Sharon Says:

    I don’t think I understood what you were up against until I read your post. I didn’t even begin to comprehend what you will have to deal with. How can I help? I am sure crying won’t solve the problem, but that is all I can do right now. Love, M

  2. Ruth Says:

    I’ve been playing with gluten free a bit for the last few months…and I’ve found some good tasting, good texture recipes…even some that were easy to make. I’ll share to help make your transition better in what little way I can.

  3. Diane Says:

    Ever since we talked I have been thinking that maybe there is the authoring of a gluten-free cookbook in your future. I will buy two copies :)

  4. Ashley Says:

    when you told me, first thing I did was google it! Sounds like a big deal! However, I know that you and your family can handle it! If there is ANYTHING I can do, call, email whatever. I know I am not helpful when it comes to food, but there has to be something I can do! :) You have a great group of people, so I know you will make it! Good thing fabric is gluten free! ;)

  5. Jess Says:

    There’s lots and lots and lots of gluten-free baking to do! It’s loads of fun! IMO, allergy baking is more fun than normal baking – more of a puzzle.

    I’d really suggest avoiding gluten-free mixes and packaged stuff. You’ll almost certainly find much better stuff homemade. If you do want to use them, give it a few weeks without eating them first – they tend to be more appealing when you don’t have a recent memory of the originals to compare them to.

    All the recipes on my blog are gluten-free. http://www.elanaspantry.com/ is a really popular one. A friend of mine who was recently diagnosed as celiac and was pretty resistant to going gluten-free is raving about these muffins, so they must be decent :) (I don’t entirely trust the recipes on my blog, since no one reads it so I get no feedback outside my immediate household, and I’m afraid our preferences may be a little on the bizarre side at this point. But I think they’re good!)

    Chris, Blaise, and Bill and Melissa have all been largely or entirely gluten-free for a while now and can probably help out.

    You will make delicious food, and everyone will be happier, and probably healthier!

  6. Beth Says:

    You’ve handled the situation admirably! Even with meltdowns! I’ll ask one of my friends, who’s gluten-free, for any yummy baking recipes she might have. She recently had to make the change to gluten-free, and I think it was rough for her, but like your daughter, she’s so much happier and more comfortable now.

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