Celiac 101

I have gotten way behind again on blogging. So let's take a step back to, oh, let's say about December of 2011. I was working a school activity with another mom and we started chatting about our kids eating habits. Two of them had very similar behaviors...uber picky, tummy aches, eating until throwing up, and a variety of other little things. She said that that sounded a lot like her son who had recently been diagnosed with Celiac Disease. I didn't think much about it at the time but filed it away under things to bring up at her next check-up (which was six months away). Over the next several months I tried to be a little more aware of her eating habits, when she got tummy aches and other things. I noticed she called me nearly every day from school with a tummy ache about an hour to an hour and a half after lunch. At first I thought she was sick and would go get her, later I found taking Tums helped and eventually stocked her pockets with them before she left the house. I also noticed she was becoming more and more picky, if that was even possible. She would eat fewer and fewer things, even those she had always loved. Something else that concerned me was that I was becoming convinced something was wrong in her gut. She had bathroom issues. Everything seemed to upset her tummy and go right through her. About this time (April) I made her 9-year check-up appointment. When we went in (May), I shared my concerns with the doctor. He agreed that it did seem very consistent with Celiac or Gluten intolerance, perhaps a food allergy. One of the things that concerned him that I hadn't even considered was her stats. Her history for height and weight has been a consistent upward trend at almost a perfect 45 degree angle of 3-4" per year and 5-6 pounds. This year she only grew an inch and had only gained 1 1/2 pounds. Something wasn't right and her body wasn't growing. Looking back now, it was like Duh, how could I have not noticed she hadn't grown much.

  

Anyway, I knew there was a blood test for Celiac so when he suggested that we try eliminating certain foods I asked if we could just skip to the chase and do the blood work. He agreed and the waiting game began. The preliminary blood tests came back positive for Celiac and allergies to Wheat, Dairy and Eggs. Our next step was to meet with Pediatric Gastroenterologist to see what all these tests meant. In the meantime we still couldn't change McKenna's diet. She needed to continue her regular diet until all the testing was complete. After consulting with the specialist (early July) the next step was a an EGD (Esophagogastroduodenoscopy-a test to examine the lining of the esophagus, stomach, and first part of the small intestine. It is done with a small camera (flexible endoscope) that is inserted down the throat.) She was a trooper through the whole procedure and everything went very well except for a minor reaction to possibly the adhesive used to secure her breathing tubes during the procedure. It cleared up by the next morning.

 

The biopsy was sent off to the lab (Mid July). Then we waited. The initial exam from the scope was good, her insides looked pretty healthy so either we had gotten a false-positive on the blood work or we had caught this at the very beginning stages. So we hoped for the false-positive. I don't know how long it took but it seemed like an eternity. Finally we got the call and it was not as we had hoped, the biopsy came back positive for Celiac. It wasn't all bad though, at least we knew how to treat it and could help her feel better. But we still had to wait...another round of blood work (August) to get a baseline for monitoring. So we had the blood drawn and then saw the specialist again. She was officially diagnosed with Celiac Disease and we could now start treating it. As for the allergies to Eggs and Dairy, they tested really low so the doctor wants to hold off on that until we can determine how she responds to eliminating Gluten. Another weird thing about Celiac is that those with the disease usually don't respond to one of the Hepatitis vaccinations so they do a simple blood test to see if they responded or not. McKenna did not. So she will have to be re-vaccinated when her numbers from blood work are in the right zone. Probably by the end of the year. She is also Vitamin D deficient and has to take that daily. So the only treatment for Celiac Disease is diet. The elimination of gluten basically which is all things containing Wheat, Barley & Rye.  The hardest thing about this whole process was knowing that in May she was initially diagnosed with "likely having Celiac" and we couldn't take her off Gluten until all the testing had been done in August. I felt horrible feeding her food that was obviously hurting her. Two things about living the Gluten Free Diet....Gluten is in EVERYTHING and buying Gluten-Free food is EXPENSIVE! $18.00 for the four things shown in the picture! The first month was pretty hard trying to understand, educate and figure things out. School was starting and I worried about her being out of my care. The first month was really rough on McKenna. A lot of tantrums, crying, cheating, mistakes, etc. It was hard on everyone. Everything I cooked that was Gluten-Free...everyone HATED. I didn't like leaving her out and feeding her "special" meals. So there has been a HUGE learning curve and we are starting to settle into a routine. The school offers Gluten-Free meals so she eats at school most days. We haven't got 100% GF as a family because it is just too ridiculously expensive. We have a blend rather where I try to cook most meals GF but if I know it isn't something she'd eat anyway, she'll have a baked potato...her new favorite food. She is good about it and doesn't mind. She actually prefers to have a baked potato and asks for one daily. She loves her special cupboard and all the special treats she gets and nobody else does but will still have occasional meltdowns when we get something she can't have. It definitely keeps me on my toes and I have to really think things through. My first big mistake came at a Primary activity where we had cookies, cupcakes and other yummy treats and I called all the kids over to come and eat. McKenna just stayed far away from the group off by herself. I called her over and told her to come eat. She was like, "Mom, I can't have any of that". She was so sad and I felt so horrible that I hadn't planned for that. I always carry something extra in my purse now for just such occasions. So life goes on and we are adjusting. I have had an overnight education in nutrition and am constantly amazed at where Gluten is hiding. We are just focusing on eliminating Gluten right now and we'll work up to the cross-contamination issues. It was just all too much to take on. We hit some bumps here and there and when she does get an occasional tummy ache we have to look back through the day and see what she may have had that we cross off our list. For now this is a life long disease and she won't outgrow it. It is something that will get worse over time and could eventually lead to cancer if left untreated. Obviously that is worst-case scenario but it does make me sad that she can't ever have those things she once loved. While the whole process has been expensive, time consuming and frustrating, I am glad that we know how to help her. So much more things make sense now even back to her being so sensitive to formula as a baby and being a barfy baby. I feel bad that we didn't know for so long. Bottom line: She is doing SOOOO much better. I was amazed to see just how quickly we noticed results. I know that she must be doing better because just yesterday she brought me some jeans she's been wearing for two years and couldn't button them! Who thought that would be exciting?