Celiac Disease

Our Lily gets sick when she eats wheat, corn, oat, egg, apple or tomato. We have no idea why. This is her story.

Lily had a rash on her face which started about a week after she was born. The doctor kept telling me it was baby acne and not to worry. At about 3 months the doctor decided it was no longer baby acne but since she was gaining weight at the appropriate rate this was not something we should worry about. (turns out her formula had a bit of wheat or corn in it).

Lily began to eat solid food at four months. I gave her the food just as the doctor recommended one food at a time to test for food allergies. I did not detect any food allergies at all for any food. I was looking for a change in her condition not a continuation of the same old thing. Lily, who was at the time developing at a rate much faster than the other children in her play group, stopped developing. She was rolling over at 8 weeks and sitting up etc. But at four months she stopped rolling over and sitting up, she slept a lot and starred off into space a lot. She also developed a bad diarrhea problem and a bad diaper rash. The rash was so bad that the skin would bleed when I wiped off the poop, which happened about 8 to 10 times per day. The doctor said this was normal? Babies get diarrhea and rashes, she is gaining weight, she is tracking correctly on the growth chart so all it fine.

At nine months Mandy and I took Lily to America. The toll of the flight and the increased amount of solid food led to a huge reaction. Lily started to throw up, in addition to the diarrhea and rashes. I ended up getting sick too so I thought she had a bug of some sort. The trip was very difficult because of all the vomit and diarrhea. She was an angel the entire time, I don't even remember her crying at all. She slept a lot or sat quietly. I was feeding her oatmeal and apples every morning.

When we got home from the trip I was reading an email from the babycenter.com and they were discussion wheat allergies and other food allergies. They discusses how parents often miss food allergies because sometimes the children don't begin to have a reaction until after being exposed for awhile. I thought to myself, maybe she is allergic to something. I remembered that she used to be so active and LOUD and now she is so quiet and sweet.

I stopped feeding her solid food for a couple of weeks. She got better. The vomiting, rashes and diarrhea were nearly gone. I re-introduced foods again one at a time and was able to tell what her reactions looked like. I can tell when she gets a hold of something that does not agree with her, she gets quiet, she gets little bumps around her mouth long before she gets really sick. So now armed with this information I eliminated the foods she was having a reaction to from her diet.

At the next doctors appt I mentioned to him all that I had discovered. The doctor insisted that we give her a battery of tests to discover why she has a reaction to these foods. I took her to the lab and held her down while they took 5 vials of blood from my baby. That was horrific. All the tests came back negative. The doctor insisted that she go see an allergy specialist in Hawaii. So we flew the whole family to Hawaii and he did a battery of tests, scratch tests, blood tests, still nothing. According to the doctors there is no reason for her to be getting sick from those foods. They said they could take some scrapings of her colon, I said no thank you. So we don't really know why these foods make her sick, just that they do. The allergy specialist and my doctor both recommend that I don't feed her stuff that makes her sick, ya think?

Now came an entire year from one until two where I had to learn about the hidden wheat and corn in just about everything. Wheat and Corn are not really labeled on food in a way that I can understand. Just about all ingredients contain some wheat or corn. Baby food, pure natural baby food contains citric acid, which is made from corn. It took me ages to actually eliminate all the bad foods from her diet. But, by watching her closely I was able to get to a place where she is well more than sick.

So now the true Lily has emerged. She is not a sweet and quiet girl. She is loud and wild. She loves to run and play and scream. A huge part of me is so glad at all of this craziness. I am so glad that she is well enough to throw temper tantrums and has so much energy. The rest of me wants some ear plugs. This is our story, hope it helps someone else!


Posts I have written about our struggles...

January 17, 2005 - Celiac Disease

October 19, 2005 - Processed Food

November 19, 2005 - Wheat Free, Worry Free by Donna Korn

December 1, 2005 - Terrible Twos or Maybe Not

January 27, 2006 - Plantain

February 14, 2006 - McDonald's

February 20, 2006 - Miss Lily

Blogging Buddies with similar struggles...

Gluten Free Girl - Shauna writes a lovely blog about living gluten-free. She is an amazing writer and shares wonderful recipes and experiences with eating out. She also has the most amazing attitude toward Celiac Disease and learning the find the silver lining in eating gluten-free.


No Appropriate Behavior - Another mom struggling with keeping her kids diet safe from the food that make them sick. It is always nice to find someone who shares your woes.

Other Internet resources I have discovered...

The Celiac Disease Center at Columbia University

Celiac.com

Gluten Solutions - They ship to APO Addresses and I love them!

Tell me about your struggles and lend me your resources!