Thursday, April 12, 2012


Norah has been suffering from stomach aches for the past few months. Nothing extreme and nothing that seemed to interfere with her daily activities or delightful disposition. For a while I suspected that she was doing a little attention seeking (being sick around here is a fast pass to a bed on the couch, the special treat of juice, and more television than usual), and/or trying to get out of eating vegetables at dinner. The complaint almost always came during a meal, far before it was over.

It wasn't until she was asking to go and lay down at random times during the day that I figured she needed to be evaluated. We saw her pediatrician who felt that her lower abdomen was a bit tender and slightly distended. She told us to try some mild antacids and check back in a month. The stomach aches continued and she had about a week of irregular pooping. I took her back in and we had a blood panel and stool analysis done.

On Monday we got her results and Norah is testing positive for celiac disease.

According to Wikipedia, celiac disease:

"is an autoimmune disorder of the small intestine that occurs in genetically predisposed people of all ages from middle infancy onward. Symptoms include chronic diarrhea, failure to thrive (in children), and fatigue, but these may be absent, and symptoms in other organ systems have been described.

A growing portion of diagnoses are being made in asymptomatic persons as a result of increased screening; the condition is thought to affect between 1 in 1,750 and 1 in 105 people in the United States. Celiac disease is caused by a reaction to gliadin, a prolamin (gluten protein) found in wheat, and similar proteins found in the crops of the tribe Triticeae (which includes other common grains such as barley and rye).

Upon exposure to gliadin, and specifically to three peptides found in prolamins, the enzyme tissue transglutaminase modifies the protein, and the immune system cross-reacts with the small-bowel tissue, causing an inflammatory reaction. That leads to a truncating of the villi lining the small intestine (called villous atrophy). This interferes with the absorption of nutrients, because the intestinal villi are responsible for absorption. The only known effective treatment is a lifelong gluten-free diet. While the disease is caused by a reaction to wheat proteins, it is not the same as wheat allergy."

It explains a lot. It certainly explains why her stomach hurts and feels full after only a small amount of food. She is a skinny kid, but nowhere even close to failure to thrive (she has the exact same body type as BVZ-I attribute her figure to genetics, not celiac). Most young kids who have severe celiac disease suffer also from debilitating eczema and other skin conditions. Norah has none of that.

Now, in adults positive blood work isn't enough for a confirmatory diagnosis. An endoscopy and/or colonoscopy is typically done to evaluate the damage done to the villi in the intestine and bowel and gauge the extent of the inflammation. A biopsy of that tissue is often also done. Obviously those procedures are incredibly invasive and would only be done on a three-year-old under general anesthesia.

Her pediatrician feels that regardless of the extent of it now, based on her blood work she has a 100% chance of developing full-blown celiac disease at some point in her life and her symptoms could get much worse. Since the only treatment is a gluten-free diet there is no reason to delay getting her on the diet now. In fact, it will probably be much easier for her to adjust to this lifestyle now rather than when she's older. Getting rid of her present stomach aches are only a small part of it. We have to take steps now to prevent damage to her organs in the future.

I have been reading a ton about it in the past few days, and there are lots of people and lots of kids who are absolutely debilitated by this disease. They can't have any trace of gluten in their bodies or on their skin-even handling play-doh will cause a reaction-without getting incredibly ill. I think an accurate comparison can be made to a peanut allergy. There are some people who will get hives from eating peanuts and then some people who will die from breathing peanut dust. From what I understand so far, Norah is definitely on the hives end (thank god). Now, that's not to say it might not intensify as she gets older, but there are celiac sufferers out there who have it much, much, MUCH worse than she does.

So, what do we do from here? In a nutshell, she can't eat gluten anymore. That means no more bread, no pasta, no cakes, cookies, cereal, etc. It's pretty restrictive, and when you look closer it also means no salad dressing, no condiments, no lunch meat...basically anything you buy at the grocery store that comes in a can, box, bag or jar has gluten. Jelly has gluten. Some peanut butters have gluten. Applesauce in a glass jar has gluten. Canned beans have gluten. A lot of yogurt has gluten. Anything frozen is going to have gluten.

Now, my kids don't eat a ton of processed food. I do my best to fill them up with fresh fruits, vegetables, lean meats and dairies. But they do eat a lot of gluten. Norah has either waffles, pancakes or cereal for breakfast every morning. She has a sandwich for lunch every single day. Quesedillas are coveted. She loves ranch with her carrots. She eats a lot of pasta. She could eat her weight in pizza. She loves a good chocolate chip cookie more than life itself. And a good cracker and cheese plate is an afternoon snack enjoyed regularly around here. In other words, eating as she knows it is going to change.

When I picked Norah up from school that day I explained to her what her doctor had told me and how she was allergic* to a lot of different foods she is used to enjoying. She took the news really well and was interested in hearing all about it. She has been telling people that she has an allergy called Silly-Ack. [*I know that it isn't technically an allergy, but it was the easiest way to explain it to her. There's a great Curious George episode that she loves about a cat who has an allergy. Television wins again.] She may change her tune the next time we are at a birthday party and she has to eat the cupcake from my purse and not the cake table, but we'll deal with it one cupcake at a time.

That afternoon we went to a natural food grocery store and I let her fill the cart with things that sounded appealing to her. Gluten free food isn't cheap. A jar of marinara sauce was $6. A box of spiral pasta was $5. The box of crackers she picked to take as her school snack was $4.50. A box of frozen waffles was $6. Peanut butter was $5.75. Jelly was even more. Now, obviously the idea is not to replace every food she might eat with a gluten-free version. In an ideal world we would only eat fresh, locally grown, raised, and prepared food. But our world isn't ideal and my three-year-old loves peanut butter. And frozen waffles. And cheese and crackers. (And I am totally okay with that.) One of these days I will make a big batch of homemade marinara sauce to freeze for the foreseeable future. But that day is not today and so I spent about one billion dollars at Sprouts. Even vitamins have gluten. A bottle of gluten-free children's vitamins cost $15. Geesh.

Today was day three and so far, so good. I am not going to say that gluten-free pasta is the same as regular pasta, but it was good in it's own way. We've been eating a lot of broccoli. The pediatrician said it might take several weeks to see an elimination of her symptoms. But, today there wasn't a single stomach ache complaint, so we may already be onto something. A lot of people with celiac also have issues with dairy and eggs, but unless something changes we are keeping both in her diet. Dairy free would be really hard and I hope we don't ever have to cross that bridge.

I am not yet decided how to handle Lou. On one hand he's so little and every day is a new food adventure and I don't know if I want to deny him the nutrition contained in whole grains and foods with wheat right now.

On the other hand, I feel like in order for this to work, the entire family has to eat gluten free. I am not going to make Norah feel singled out, nor am I making multiple meals, multiple times a day. There is also a very serious issue of cross-contamination with celiac disease. Using the same toaster for regular and gluten-free waffles, for example, could contaminate Norah's food. Same goes for cutting boards, utensils, dishes, etc.

To further complicate matters, there is a significant genetic component to celiac. It is likely Lou will be affected at some point as well. The pediatrician asked a lot about any symptoms either BVZ had ever experienced and encouraged us both to be tested. I am fairly certain that I will also test positive. [I was diagnosed with irritable bowl syndrome a million years ago-okay maybe ten or twelve-and the more I read about celiac the more I suspect it is the source of a lot of my own sickness over the years. We shall see.]

It's going to be a work in progress. The one thing I am certain of, however, is that we are going to use this as an opportunity to focus on health, eating as clean as we can, and putting physical health and well-being at an absolute top priority. And yes, that just may mean I have to get my ass to a gym. Sooner rather than later.

In unrelated, and somewhat more uplifting news, Aunt Amy has been watching Lou and Norah every Thursday when I go to work. Today I got these pictures. Lou is such a toddler. And Norah is such a personality. How very, very, very lucky I am.


k-dog studios said...

did I tell you what an awesome mom you are lately?

Isabelle Baeck said...

Welcome to the Celiac family! Not the best of clubs, but it's not as bad as it seems in the beginning. Really.
Getting Lou on a gfree diet won't compromise his nutritional intake. Maybe take your time with him to make it an easier transition?
It is more expensive, but at least there's a huge gfree market now. Not so much in the past :( Also, there are big ways to save if you keep your eye out (can send some tips).
Hang in there! As always you tell a tough story and still make me smile :)

meganastone said...

I already knew about N and still got a bit choked up. If anyone can handle this it's you. N is lucky to have you and your Internet researching skills. Gluten free is going to be the new black!

P.S. N has so many fantastic dresses since you moved to Texas =)

JAMS' HOUSE said...

Damn. Sorry to hear about this.

If anyone can handle this it's you.

Natalie said...

Man. What a story. I'll bet you in a year you'll come back and read this post and wonder what you were ever worried about. It'll just become your life. I've also seen an increasing number of restaurant menus that have gluten free items. And I'm sure there are whole gluten free food blogs with recipes and shopping tips. You'll be able to do it, I'm sure.

Kristy said...

Wow! What a double edged sword. On the one hand it stinks that she has Celiac and on the other I'm sure you are relieved to know the cause and be able to do something to help her. Good luck on your eating clean journey!