Monday, December 27, 2010

Starting out: the first week

The day we found out about Elizabeth's celiac disease, some friends of ours ran out and purchased Gluten-Free Cooking For Dummies for us.  That and Celiac Disease For Dummies are two books we highly recommend, as they contain all the very basic information you need, especially if you don't get to meet with a nutritionist for three hours, as we did.  these books will help you get started while we continue to add links to our page.

Oh!  And to make your life easier, Try some K-Toos, one of my daughter's favorite cookies.  These come in six-packs!

Our Celiac Story

In the fall of 2008, Elizabeth was diagnosed with Celiac Disease, which is probably the most common autoimmune disorder out there for people of european descent.

In 2007, when she was one year old, Elizabeth started having diarrhea "episodes" which would last for a week or so.  These started in the spring and went all summer.  I tried all sorts of dietary changes - eliminating different fruits, veggies, dairy - but nothing seemed to work to keep these episodes away.  I took Elizabeth to our doctor (who is an amazing doctor), and we ended up not having any answers from her, either, except that it seemed to be like an irritable bowel-type problem.  Our doctor referred us to Dr. Sood at Children's Hospital. 

It took a while to get in to see Dr. Sood. When we finally got in, he wanted to do some testing on Elizabeth, but we were hesitant to put her through anything that might require a surgery or biopsies, especially since her symptoms had disappeared in the time it took for us to get our appointment.  We thought that perhaps it had been some virus that she just hadn't been able to shake.

She had occasional (but not as frequent) bouts of diarrhea over the next fall, winter, and spring, but in the summer, it hit full-force.  17 weeks of diarrhea running from her diaper-clad bottom and puddling on our carpet! 17 weeks of wondering what was wrong. 17 weeks of cleaning up messes wherever she walked, sometimes starting in her big girl bed and trailing through the entire house as she tried to wake us up in the middle of the night.  What was wrong with our poor two year old?

Back to Dr. Sood and Children's Hospital. At this point, we were desperate for answers and ready to try whatever it was he recommended.  Elizabeth's wraith-like appearance and distended belly made her look like she was starving, though she ate way more than most two year old girls would. Given these facts, Dr. Sood did a simple blood test to check for celiac disease (though he never actually referred to it by name, probably so as to not scare us!)  It actually looked for certain antibodies that are present in people who are positive for celiac.  Her test came back negative. 

Dr. Sood said that he wanted to go ahead and do a biopsy of her duodenum and upper intestinal area, as this would give him a better idea of what he was looking at.  He brought up the idea of celiac disease and what it meant if she had it.

We brought her to the hospital on "surgery day" and sat waiting and praying as the surgery took place.  I don't think there is anyone who likes to see their child go under anesthesia, and we were no exception.  When she woke up, she was combative, screaming, crying, and thrashing.  It was all we could do to hold her down and keep her safe for the 45 minutes it took for the anesthesia to completely wear off.  After she was discharged, we were told that we should perhaps start her on a gluten-free diet right away, just in case.

We did start her on as much of a gluten-free diet as we could (we avoided bread and super-obvious things) as we awaited the results.  I don't know how long it took for the results to come in.  I am guessing it was no longer than a week or two.  We were called and told that we needed to see the doctor to discuss the results.  Uh-oh!  That can never be good news.  Good news can be told over the phone. So we again headed to Children's.

When Dr. Sood sat us down, he said that Elizabeth's case was a very interesting one - her antibody test had come back negative, but the biopsy had been positive.  In fact, the lab technician who was examining the biopsy called his colleagues over to see, and they were all amazed that a biopsy that was so clearly positive for celiac could have had a negative antibody test.  I guess that is rare. Dr. Sood also told us "This is the best diagnosis Elizabeth could leave here with, considering her symptoms."  It felt like a death sentence. 

We left Children's that day with a three-page list of what Elizabeth could and could not eat (mostly ingredients that I had never heard of, like teff and quinoa) and were told to be very strict in this and to set up an appointment with Elaine Danner, a dietician at Children's that would help us navagate the necessary lifestyle changes.

I remember vividly that it was Friday. I had to get my child through the weekend, gluten-free, with nothing but three piece of paper full of foods and ingredients I had never heard of.  No more pizza, pasta, bread, crackers, cookies, pretzels, McDonalds.  The only things that I could be sure of were fruits and veggies.  Even meats could be questionable because they could have marinades, and dairy can have additives that are unsafe. 

I walked into the store. I walked around the store for twenty minutes, looking for something gluten-free.  I stopped in the middle of an aisle and cried because I didn't know how I was going to feed my precious baby and keep her safe from almost everything on the shelves of the store around me. I asked an emplyee to help, and she looked at me as if I had three heads.  And I finally left the store with red grapes and a can of Pringles that the nurse at Children's told me was GF. I figured Elizabeth could survive on Pringles and chips for one weekend, until I could figure out more.

We got in to see Elaine Danner pretty quickly, and it was a three-hour appointment. During that time, she taught us as much as she could about celiac disease, gluten (what was it, anyway?), cross-contamination, and reading labels.  We left feeling so much better.  We found out that one of only three GF bakeries in the state is only about three miles from where I (Stacci) work.  And we explored organic-style grocery stores, in heaven that GF products existed that would make it easier for Elizabeth to lead a somewhat normal life. 

At some point in here, Dr. Sood did genetic testing for celiac, and her test came back with a positive homozygous DQ2 gene.  This meant that she was genetically predisposed to celiac. That pretty much confirmed the diagnosis.

It took about four months before we really felt like we knew what we were doing and like we could really protect her well from the evil work of gluten (we now jokingly call it "Lizzie poison").  There are still times when she gets sick, and we know that she somehow touched (yes, touch can make her sick, too!) or ate gluten.  There are times when she will get sick from cross-contamination, as even a few crumbs can make her miserable.  And there are times when we feel sorry for ourselves for having to deal with this and to pay twice as much for her foods.

But, overall, we are so proud of Elizabeth.  Although she actually shed a lot of tears at first over not being able to eat her beloved Banana Nut Cheerios, she now accepts life as it comes.  We provide her with many GF options that are roughly equivalent to the glutenous options, and she never, ever complains.  She advocates for herself by asking "is this safe?" anytime she is not at home and wants to eat something (and even at home many times!) And she is healthy, has gained weight and grown (her growth had made her a bit shorter in stature than she should have been), and you'd never even know that she has a major disease unless you'd been told. 

It has been a great boon that one of the fad diets that has been around for about a year is the gluten-free diet.  Many companies are starting to label GF foods, so they are much easier to find.  The GF food labeling rules are strict, so there is no chance of her getting sick from cross-contamination from these foods (if they are prepared correctly). And recently, the Gluten-Free Trading Company moved in with Molly's Gluten-Free Bakery, so both are close to my work and safe for Elizabeth. Schar makes great pizza crusts, and places like Marty's Pizza have started offering GF pizza in their restaurant.  Augie at Perkins in Watertown has used some of our GF cookbooks to create a whole GF menu, and is awaiting approval from the corporate office to implement it.  I am just so excited about all of the positive changes that have happened in the two years that we have been dealing with this - we have gone from standing in the middle of a grocery store aisle crying because gluten is in everything to being able to take our whole family out to eat, entire GF sections in grocery stores, GF labeling requirements, and a much greater awareness of the disease.

By the way, did you know that celiac (1:133... some estimates 1:100)  is more common that autism (1:150), MS (150:100,000), Type 1 diabetes (20:100,000),  and many other "common" diseases?  It is commonly misdiagnosed as irritable bowel and the like.  It weakens the immune system and often leads to other symdromes and diseases, such as MS, lupus, fibromyalgia, chronic fatigue, cancers, and MANY others.  Check it out at And if you do get tested and the antibody test is negative, have another test (genetic screen or biopsy) done anyway.  The antibody test is not always correct, as our experience shows.

Purpose of Celiac at School

The purpose of Celiac at School is to provide all the information a parent may need to navigate the school system on behalf of a child with celiac disease.  Over the next few months, we plan to add the following: information on 504 plans, snack lists, a letter for other parents, school lunches, and product recommendations. What else would be helpful?