Wednesday, October 10, 2007

Meet the newest member of the Gluten Free Team

It's official.

My dearest daughter has celiac disease, like her mother. The blood tests were off the charts, but the endoscopy confirmed it. Here's her tale. Hope you don't mind that it's not a recipe.

My sweet baby was a very sweet baby. Easy, and happy. Except when it came to going #2. She struggled with this from about the time we started her on solids. It was horrible, really. Constipation was a constant companion. She would withhold which would just make matters worse. We are talking about a baby here, and yet she would still hold it until she couldn't any longer. The doctor suggested improving her diet, reducing milk, adding more fiber. We even used stool softeners and, yes, suppositories. (I wonder if she's going to like me telling you this?)

Anyways, when she was 2, I was diagnosed with celiac. I wanted to get my two children tested, but the pediatrician didn't see the need. You see, I have giant children. They literally are amazing growers. And apparently, children with celiac, aren't. Or so he said. So I didn't press for it. But in the back of my mind, I knew.

Every well child checkup after that went pretty much the same. The doc would marvel at her 95th percentile stature and tell me I had no need to worry about celiac disease. Even though she still was having bowel issues such as abdominal pain, gas, constipation, and fatigue. I would nod and say okay but secretly I knew something was wrong, and I knew she was going to end up with a diagnosis some day. I almost started hoping that her growth would stop so I would have a reason for her to be tested, you know, a reason besides that whole motherly instinct thing.

Now I don't blame her doctor. He's amazing, caring, funny, and great with my children. We've had the same one for 4 years now and I couldn't be happier. But I also know that I know a little bit more about celiac disease than the average gluten-eating person, even maybe more than the average pediatrician. So this year I was a little more persistent at her well child. The doc heard my concerns and told me he'd write a lab order, if I wanted him to. I didn't cave in to his expertise, and so I took the order in my clammy little hands and had her blood drawn that same day, before my courage waned.

I was not surprised at all at his Saturday morning phone call. Tests came back. He referred us to a GI. Apparently a normal reading for the celiac panel is 5 or under. Her numbers were greater than 100. Because they stop counting at 100.

We met with the Pediatric GI. He was also great. Her endoscopy was scheduled for a week later. But it was only to confirm. He told me that in his experience, children with those kind of numbers from their labs are positive for celiac 100% of the time. 100%? Well then why do the endoscopy? It seemed a bit redundant. But we went.

The endoscopy was pretty scary, for both of us. She worried about it for the entire week. I was okay up to the point that they put that little mask over her nose and mouth and she fell asleep. Umm, you know how to wake her up, right? She's not dead, right? Because she looks like she's dead. I was ushered out for the rest of the procedure and waited in the children's hospital parents room. Too antsy to do much of anything, I watched the other parents. I wondered what their children were in here for. I thought of all the horrible diseases and maladies that possibly afflicted their small babies, and I was so grateful for celiac disease. So grateful. Here was something I could help her control, something I already knew how to control, and she could live a long, healthy, gluten free life.

Once it was over, the GI took me into a small room to discuss the results. The biopsies wouldn't be done for a few days, but she had the scalloping of her duodenum, indicative of celiac disease. Were any of us surprised?

I went in to her recovery room, where she was still a little high from the anesthesia. She hadn't been able to eat all morning, so they gave her a popsicle. She didn't like feeling drugged, and her throat was sore, and she wanted to go get something to eat. I couldn't wait to take her home.

On the way back to grandma's to pick up her siblings, she wanted to stop and get food. I thought for a minute. Ummm, there aren't really any fast food places that have healthy gluten free food. So what have I been eating? French fries and milkshakes. Yeah, I can't feed that to my child for lunch. For the first time I thought, Wow, this is going to be different. Not only do I need to feed my daughter gluten free, but it needs to be healthy. Maybe this will be good for the both of us.

So now we have a whole new world of gluten free living to enter. What on earth do we pack for her lunch? What about birthday parties and class parties? Do I need to start baking more gluten free foods so she doesn't feel deprived? Do I tell all her sunday school teachers, and piano teacher, and all the other adults that give her treats? Or do I trust her to remember to check labels and ask if things contain flour or wheat?

I'm super lucky in that she's not a picky eater at all. In fact, she loves vegetables and fruits and grown up food of all kinds. I know that this will be hard at first. But most new things usually are, and as she starts to feel better, I know it will be easier and easier.

I'm so grateful for celiac disease. It really could be so much worse.


Let Them (not) Eat Cake said...

Welcome to "The Celiac Club"!

Melanie- you and Liz do such a great job with this blog, that I'm guessing the transition won't be as terrible as you think. I'll be praying for you and your daughter as you sort out her new way of eating!


liz said...

Melanie- great post. I can't imagine the emotional trip this experience must be for a celiac or the mother of a celiac.

You will do great guiding her along!

~Kat~ said...

that brought me back... my son was diagnosed two years ago and it was HIS diagnosis that sparked my investigation into my own issues, thus my own diagnosis.
Everything you described, from your hunches to the experience of watching your child succumb to anesthesia... it was just, JUST what I felt too.
I think they need to change those "gold standards" of diagnosis for children. Let the numbers speak for themselves and leave the endoscopies out of it.
I hear you on the healthy lunch thing... we do a lot of "rolled up Boars Head" around string cheese. but then again, since last year my son has been able to buy a GF lunch at school thanks to a new MA standard to "accomodate ALL children with ALL food allergies and issues, including Celiac". Taco day is his FAVORITE. But then again the kid can eat his weight in bacon when they do "breakfast for lunch" days. The food services buys him Vans GF waffles for that day... and they prepare all his food in a dedicated area of the kitchen. We are lucky... I wish all schools would comply. good luck to you both. How lucky that she has an understanding mother.

Cheekalina said...

Thank you for this post. I really appreciate the breakdown of her diagnosis.

And yes, I agree. Thank goodness for Celiac sometimes. We are so lucky to have it be regulated by diet and vigilence.

Melony said...

Thanks so much for the encouragement everyone!
Lindsay-Thanks for the prayers! I'm hoping the transition is smooth, and maybe I'll even find some new recipes in the process.
Liz-you're the bomb.
kat-what a fabulous school district you live in! I'm going to have to check out our school to see what they offer, if anything.
cheekalina-amen about the vigilence. I'll probably be even more so now.

~Kat~ said...

I just thought you would all like to see how a gluten free lunch option is written into our public school "Heath and Wellness Policy":

D______ Food Service will offer varied and nutritious food choices that are consistent with the
Federal Government’s Dietary Guidelines for Americans. The guidelines refer to the current set
of recommendations of the Federal Government that are designed to help people choose diets that
will meet nutrient requirements, promote health, support active lives, and reduce chronic risks.

• Menus will be planned in accordance with State, local, and Federal Government standards.
Students with special dietary needs (e.g. diabetes, allergies, celiac sprue) will be accommodated
as required by USDA regulation.

when I saw that phrase "will be accomodated" I JUMPED on that. I went to the school nurse first and said "does this say what I think it says?" and she happily said that yes, under the new policy, the school was required to accomodate my son.

Shelly said...


Reading your recap of the endoscopy was so close to home. Will had his a couple of weeks ago. We met with the Dr. and went over our results too. He was also off the charts.

Now we need to get our house gluten-free and get him growing. Oh, and get the rest of us tested.

I continue to love your site - even though I don't always post a comment!

Jen said...

Sorry to hear about your daughter diagnosis. My 8 year old was just diagnosed this summer with celiac. Last September we learned she had diabetes. Our lives have changed dramatically since. I too am grateful for challenges that can be managed and still allow my daughter to have a wonderful life. I've watched other parents at the childrens hospital and been so grateful that my child still has all her arms and legs and can talk and function normally. This last year has not been easy. I found great hope when I was sent a link to your website. The recipes are realistic and taste great. I am always thrilled to find regular grocery store items that are gluten free for my daughter to eat. Her favorites are Hormel Chili, Trix cereal, and Progresso Clam Chowder. We do Taco night a lot at our house. And the only bread she likes to eat it the Red Mill bread mix that I bake once a week. She often takes a chicken breast for lunch. We are also lucky to have GF school lunch as an option. However, not all of it is very tasty and she has to commit to eat all of it when she gives herself insulin. So usually she takes stuff from home. I send her with Reese peanut butter cups on days when someone is celebrating a birthday at school. I know she doesn't yet realize what she will be missing in her life. But at least she doesn't complain about tummy aches anymore. I am nervous to have my other 3 kids tested, but I know I could handle it if we had too! Love your site! Thanks!

Melony said...

Shelly and Jen-We too have to get the other children tested. What are the odds that they don't have it? Not so good. I would almost rather everyone did, so it wouldn't feel like I was singling her out. But at the same time, not. Because my boys are kinda picky and might starve to death. :)

Janice said...

Wow! I am so impressed with your diligence. It is so hard to be a parent when these things come up. A good friend who has celiac had her kids tested and one child had it. Once her child got on the celiac diet her daughter's headaches went away! You do such a great job on this post and such a service to everyone looking for good celiac meals.

michelle said...

Great post! My hubby is 6'1" not exactly punny and wasn't diagnosed until adulthood. I hate that size thing as an indicator. So glad you solved her problem though and I know what you mean about being so much worse. Whenever people say they are sorry for hubby's problem we never are, it is controlable and aftet you have lived with a constant tummy ache you are just happy to be able to do something about it. HOpe she is feeling better, it is amazing how fast it can improve things. She is lucky to have a mom who knows what she is doing!

Melissa said...

I realize this is some time after the original post, but I just received this link for the yummy recipes.

Anyway, I wanted to share how different everyone's symptoms can be. My now 10 year old daughter was diagnosed last March after missing 41 days of school in the 3rd quarter due to stomach pains. We thought it was mental and she just didn't want to go to school. After trying some anti-drainage medicine, our pediatrician recommend a GI doctor who ran the blood test (close to 100) and later did the scope to confirm the damage. The interesting part is we went the Celiac route because I thought my brother had it. It turns out he actually has Lymphoproliferative Disease with Selective immunoglobulin A deficiency so it's important that all avenues be covered.

Thanks ladies for the yummy recipes and keep up the great posts!