National Celiac Disease Awareness Day

In honor of National Celiac Disease Awareness Day, I am reposting our gluten free story, originally posted in October of 2009.

Why are we a gluten free family?

I will share words in a moment, but I want to start with this.

This is Caleb at around 5 months old. Round, chunky and fabulous. Thriving.

This is Caleb about 8 months later. Weighing exactly what he weighed at 5 months. He was getting taller, but that was the only growth he was doing.

I imagine that every parent who reads this blog can understand why we were concerned. During this time period, the asthma he had been struggling with since birth was also getting worse. We were referred to a pediatric pulmonologist, who made some med changes but also referred him to a pediatric gastroenterologist. He had some testing, but nothing was conclusive. They told me they could do a scope and small bowel biopsy, but I passed. He was only 10 months old and I didn't think the risks were worth it.

We just kept doing the best we could for awhile, not really having any answers but he was a happy kiddo and he wasn't getting any worse. He continued to struggle with needing a lot of meds to control his asthma, but we were controlling it most of the time.

Then, in late January of 2007, he was hospitalized with pneumonia. This is the only picture I have, taken on my cell phone a few hours before he was discharged but it was not this pretty. It was a lot of long days holding him while he received nebs and oxygen.

After his hospitalization, Caleb showed his first bowel symptoms that clued us into something else that might be going on. Our primary doctor actually discussed testing him for Celiac Disease, but we decided to hold off (he was somewhat anemic and had had a traumatic few months so we decided to hold off on drawing his blood). There was also the possibility that the stool trouble was related to the massive amounts of antibiotics he had been on to fight the pnuemonia, so she wanted to give him a chance to recover before putting him through more testing.

We ended up moving before we were able to do it.

Caleb continued to have extremely irregular bowels throughout the summer and into fall. Our new doctor was not very concerned about them and repeated brushed off my concerns. In the late winter of 2008, Caleb caught the stomach flu and got very sick again. In only a few hours of vomitting he was so dehydrated he needed IV fluids. The doctors in the ER didn't believe me he had only been throwing up since that morning, insisting that it takes at least 12-24 hours for a child to be dehydrated enough to need fluids.

After the stomach bug, Caleb got worse again. Interestingly enough, this is also when he completely weaned from breastfeeding. Even though it had now been almost 2 years since his growth had slowed down significantly, he had only gained around 5 pounds. Definitely not normal for the period of 6-30 months! After our pediatrician dismissed my concerns yet again, we decided it was time for a new primary care giver.

I was almost in tears the first time I met with Dr. W. I was so sure he would tell me there was nothing wrong and not take my concerns seriously... no one else was. I cried sharing Caleb's struggles. He took me very seriously, noting that in the blood work that had been done in the ER a few months earlier, Caleb had been anemic again. He told me his gut said Celiac Disease, but they would run a bunch of new tests in addition (including comprehensive food allergies which he had done before but were negative) to that one just to be sure nothing was missed.

Low and behold C's antibodies were quite high for a 2 year old. Dr. W. and the websites I read had prepared me for the high incidence of false negatives in young children because they simply haven't been ingesting gluten long enough to have built up their antibodies. Not Caleb.

We met with a dietitian the next day and went from there. His first gluten free meal was apples and (I now realize contaminated) peanut butter. It took time, but things got better. I will never forget the look of relief on the dietitian's face when I told her I was already used to preparing foods from scratch. She told me I would be able to adjust more easily and she was right. It wasn't so much of changing how I cooked as much as changing what I cooked.

Six months later, Caleb's anemia was resolved and he had gained 5 pounds. At his 3 year old well child check, his antibody levels had returned to normal ranges. He also went from 3 daily asthma maintenance medications to 1... from almost monthly oral steroid use to only needing it 3 times last winter. And, I will add, not needing it yet this year which is a huge milestone.

We have had our ups and downs since then. We have had a hard time having Caleb's Celiac Disease recognized by other medical professionals because he has never had a biopsy (considered the gold standard in diagnosis). In fact, his pulmonologist does not recognize that he has it. We have been asked by one doctor to return him to the gluten diet for 6 weeks and then have the test. Tim and I have talked about it and we simply aren't interested in it.

Why would we? Caleb is healthy and thriving on the gluten free diet. His asthma is completely controlled. He is growing. He is not anemic. His stools are almost completely regular. There are days when it is challenging, but most of the time I don't even think about it anymore. It is our normal.

Even if the test came back negative, we would not return Caleb to a gluten diet. He has had some accidental exposures and he has always reacted. In fact, as I've gotten used to the gluten free Caleb, his reactions seem so clear to me! Even if he does not have Celiac Disease, then he is most certainly a non-celiac gluten intolerant person.

Eating gluten free is certainly intimidating at first, but it is conquerable. It is stressful when your child can't eat what the other children are eating, but it is worth it. There are so many amazing resources on the web for gluten free recipes and support. My personal favorites are The Gluten Free Girl and Living Without Magazine. Although I am not a food expert by any means, I have shared some of my own recipes on this blog, which you can browse by clicking here.

Although this is not a blog dedicated to living with gluten free kids, it is and will continue to be a blog that is about living life with gluten free kids because it is who we are. If someone finds this post or reads these words when their child has been perscribed the gluten free diet, take heart. You can do it! The new child at the end of the road will be more than worth the road bumps along the way.

Gluten free food gave us our baby back.


Meredith said...

Love Doctor Double-U.

My mind has been swirling with diet possibilities for Simon...still not sure what to do about that one.

Thanks for this great post, Heidi.

Heidi said...

Yes, we miss him very much! Depending on what our insurance is we may try to get in for check ups with him when we are in town in December.

I know lots of parents try the GF/CF diet for Autism/Aspergers. A mom at our church used it and they both swore by the changes in his behavior.