Being Gluten Free

Today I'm feeling a bit inspired to talk about something close to me. If I haven't mentioned it before C has Celiac disease. This is a disease that changes the way you and your immediate family live their lives. Usually for the better.

On C's 10th birthday he had stopped growing for the third time in his life. Not just for a month but for an entire year, perhaps longer. The first time it happened, growth stopped from 6months to 13months old. This can be very significant in the development of a baby. But the pediatrician at the time just had me feed him fattier foods and was satisfied with his small weight gain. Then when he was 5 years old it happened again. The new pediatrician had his bone age done and checked hormone levels but other than his growth age being behind all was fine.

When the 10th birthday check up came around he was very ill. He had become gaunt and frail looking. He rarely had any energy and was so used to being in pain that he thought it was normal. He had also stopped developing academically and had frequent mood swings. He was also vomiting after almost every meal. My biggest fear was that he was developing an eating disorder. At first x-rays showed that he had a colon blockage the likes of which his pediatrician had never seen before. After several months of tests and procedures things weren't much better. Then we went to see a ped. GI. She was ready to write him off as having a weak stomach. Then as we were about to walk out the door I brought up the possibility of Celiac. My grandmother suffers from it but doesn't ever say much about it and I know she doesn't stick to her diet very closely. At that point we had the initial testing done. Sure enough that was what was afflicting our son. We then refused the next test to confirm the results because C had already been through so much. A intestinal biopsy just to act as a confirmation wasn't going to change how we would need to proceed.

Within a month of being gluten and soy (another allergy that showed up) free C was beginning to act like himself again. He had already begun gaining weight again and growing. His emotional health was slowly on the up swing so, his attitude was much better. The problem at that point was me. I felt like I had somehow failed him. Why hadn't I recognized the signs sooner? How were we all going to eat this way? How do I keep him from feeling like an outcast?

I studied everything I could get my hands on about Celiac. It is a highly genetic disease so myself, J and hubby have been tested. I will get S tested this year. I cannot tolerate much gluten but I don't have Celiac and neither do hubby or J.

Cooking is becoming easier but sometimes I still lack inspiration. But it is slowly coming. I am very slowly beginning to cook like I once did. As C's fears of eating anything that looks like gluten are starting to go away my want to cook is returning. For a very long time he just couldn't bring himself to even look at gluten free bread because it looked like the stuff that had caused so much pain.

This year it has been amazing to discover just how many places are willing to accommodate your gluten free requests. Last summer the boyscout camp he attended for a week made a special menu just for him. Many restaurants have a gluten free menu if you just ask for it. Also there are few fast food places that now have options (if you know what to ask for).

The hardest thing comes when people don't want to understand that it is not just an allergy. I'm certainly not discounting allergies esp. since many people can die from them. But sometimes people think that just because you can't see the effects of celiac immediately on the outside it must not be that bad. What they don't get is if I gave my son gluten in even the smallest form it is the same as slowly giving another child poison.

This week C goes in for another round of blood tests to make sure he hasn't had any gluten and to check his growth. It always makes me a little nervous. I am pretty sure he is still growing but we have reached the point where his peers are shooting up and he isn't. He will hopefully be delayed only by a few years. But we can't be certain. This is another gift of his Celiac.

But over all Celiac has lead to healthier living not only for C but for everyone in our family. Not being able to eat a lot of the junk out there has change us for the better. I look forward to being able to cook healthier food that a non gluten free friend won't know is gluten free.