Friday, June 5, 2009

How Did We Get Here, Anyway?

It occurs to me that our reason for having WG on a gluten free diet is no where on this site. A lot of you know the story, but for those who don't, here it is.

The summer before WG turned three she got sick. The symptom we noticed most was her thirst. She was guzzling water. Knowing that doctors like hard data we started tracking her intake to see if it really was a problem worthy of a phone call. She was drinking up to 80 oz of water a day. We would put her to bed with a full sippy cup and she would drain it and cry for a refill in the middle of the night. We called the pediatrician's office and were advised to cut her off or offer her alternatives like fruit or popsicles. We were also told that since it *was* summer and we *do* live in the South drinking a lot of water was not necessarily an abnormal thing. It was not unreasonable advice.

We tried to limit WG's intake. That lasted exactly one day. First she screamed when I wouldn't refill her sippy cup and then she got creative. I caught her drinking from the cat's dish. Later I saw her headed for the toilet with her cup. What goes in must come out. WG was also urinating A LOT. She wasn't potty trained yet and I would put a fresh diaper on her only to have to change her clothes five minutes later because she had peed through the diaper.

The pediatrician did a diabetes test. It was negative. The pediatrician ran some other tests which showed some abnormalities in her kidney function. At that time we were refered to a pediatric nephrologist as well as a pediatric endocrinologist.

The pediatric nephrologist was a jerk. His nurse was a jerk. I wasn't wild about his office staff either. He ordered the tests that showed her wonky kidney functioning to be repeated because, in addition to the excessive peeing, WG had a pattern of diarrhea followed by constipation. He told us that would skew the test results and that we needed to bring her in for labwork after she had had normal bowel movements for at least 3 days.

Nearly a month later this is the conversation I had with his jerky nurse:

Nurse: "We are waiting on WG's lab results. Why haven't you had her labs done? This is really important."

Me: "Well, the doc said the first results were skewed because she had diarrhea. He said to wait until she had normal bowel movements for three days before having the labs drawn. She has not had normal bowel movements for three days in a row yet."

Nurse: "You really need to have her blood drawn."

Me: "Well, I can bring her in, but she hasn't had normal bowel movements for three days and I'd really hate to have to repeat this test for a third time. What would you like me to do?"

Nurse: "She needs to have normal bowel movements for three days."

Me: "Okay, but then you're going to have to wait awhile because I don't think she has had three days in a row of normal bowel movements her entire life."

Eventually we got the labs drawn. I think we were "blessed" with three days in a row of constipation and I decided to define that as normal to get the nurse off my back. These labs still came back somewhat abnormal but the pedi nephro dismissed them and us. I was not sad. Of all the docs that WG has seen he is the only one that I knew I could not work with on a regular basis. He has gotten rave reviews from other patients, by the way. We just had a complete personality clash.

The pediatric endocrinologist was not a jerk. I actually liked her a lot. She tested WG for a bunch of things. WG tested negative for all of them.

Finally she said, "I notice that there is a family history of mental illness. Excessive water drinking can be a sign of schizophrenia. You did mention she has terrible temper tantrums. Do you think there is a possibility that WG could be schizophrenic, bipolar or OCD?"

We were a bit stunned that someone (and someone who was NOT a mental health professional) would postulate that our 2 year old was schizophrenic. I think our answer to her was something along the lines of, "No, we don't think that's a possiblity. Perhaps in 10 years or so we might consider that, but not right now."

Our pediatrician (whom we completely adore) was a bit stumped at that point. She sent us back to the GI doc that WG had been seeing on and off since birth. She had been talking to him about WG and he suggested that the excessive water intake was actually due dehydration from her chronic pattern of constipation / diarrhea. He tested her for Celiac Disease and made a follow up appointment to find out the results.

Around that time a friend and I had decided to give the South Beach diet a whirl. I don't short order cook for my family, so WG and Tim were basically eating what I was eating: lean meats, fruit and veggies. Grains were minimized.

WG started to get better. I mentioned to my mom that the GI doc was testing her for Celiac Disease and my mom told me that quite a few people in our family have been diagnosed with Celiac. With that knowledge, we took WG off gluten completely. Quite simply, she got better. She stopped seeking out water. The dark circles under her eyes disapeared. Her tantrums significantly diminished. She gained some weight (which was a good thing!), and she had normal bowel movements for the first time in her life.

Thinking that maybe we were seeing results because we were desperate for answers, we added gluten back into her diet to see what would happen. Her symptoms returned full-force.

At WG's follow-up GI appointment, we were told that her tests for Celiac were negative. She does not have the Celiac gene. Can she eat gluten? Absolutely not. Her pediatrician and her GI docs have said that she needs to stay on the gluten free diet as long as it is beneficial to her.

The gluten free diet has also been beneficial for Tim and I, but that is a whole other post!


Aunt Becky said...


I'm thinking I might have to go gluten free. I'm dreading it. I don't think I'll be very good at it.

Katy said...

I will not lie. The gluten free diet completely sucks at first. It's really hard. The first time I went to the grocery store after we decided to eliminate gluten it took me twice as long as it normally does and I left crying. Everywhere I looked there was food we couldn't have.

Now it is second nature. We still read every label but instead of seeing all the food we can't eat I see all the food we can have. It's like the other stuff has become invisible or something.

You can do it! I will tell you what the good GF stuff is!