Wednesday, May 23, 2012

Our gluten Journey

This month in AZ its Celiac Awarness month. This newly dubbed month became such just a sort time ago when a member of our support group helped present the legislation to Governor Jan Brewer. Its a big deal for us here at the Arizona East Valley Celiac Disease Foundation ( try to say that 10 times fast...let alone remember what you where supposed to say in the first place! LOL) so a celebration was put into place, a big one.

Some where along all that, I found my self getting involved...... which morphed into me becoming a member of the board- the Secretary to be exact, and a co- kids club leader.

I told myself it wasn't a big deal, but the more I get into this I am starting to questions that too...

ANYWAY, details aside, I have surprised even myself with the depth of emotion I feel for this cause. Last night late into the evening My husband And I recalled our early Gluten free days in Spanish Fork, we recalled the days when our sweet Jack began wasting away to nothing, when he was 10th percentile in weight and Height, when his belly and cheeks were huge, his arms and legs tiny. He had these " beautiful" rosy cheeks that every one complimented. Now I look at old pictures and feel sad, because I now know they were a sign of what his body was going through. He ate like no other kid could! we thought he just had the most wonderful, large appetite, just like a boy should. But there were some issues, with time, they became bigger and bigger.

It was about 5 years ago I started to get worried. He seemed unhealthy. I had 30 piano students at the time and it did not matter how many times I used Lysol on the piano keys or made them wash their hands, if they came sick (cold to flu) Jack got it. As you can imagine, that was ALL THE TIME.

 I took Jack to the dr. I told him my concerns, that his diapers were nasty, how would I ever potty train? that he was always sick, and I was worried about his weight, not to mention his emotional state and the constant asthma scares. The dr. told me nothing was wrong, he saw no issues, but because he was a nice dr. he referred me to a G.I specialist, did some blood test, told me to give jack tri-a-medic and sent me home.

The G.I specialist instantly saw a problem, he confirmed my worst fears when he charted his growth, jack had stopped growing. He sent me immediately to Primary children hospital to do a series of tests, none of which yielded any answers. I went home after a very long scary day defeated, with a very tired and scared child.

I thank My Father in Heaven for finding mercy on a mom with no knowledge of where to go or what to do. He sent me two angels.

Because I loved my piano students and their moms, I often chatted with them in between our lessons, I confided in several moms my concerns with Jack and what we had gone through. Two of them happened to have problem relating to gluten. One with Celiac and one with a Wheat allergy. After talking with them, they both suggested I do a diet elimination test on jack. I charted for several weeks what he ate, tried to take out different items, from tomatoes and onions, to cheese and carrots. Jack was young and didn't have a huge variety in his diet. Finally, I went to mike and told him the only thing left was wheat. It was the only thing consistently in his diet that we had not removed.

Mike and I worried about trying it. We were on a 30.00 a week food budget- 50.00 on a good week. ( can you even imagine trying that budget now???) We couldn't see how it would be possible to feed our family when Gluten free products were SO much money. But we tried it anyway, wanting Jackson to be healthy. Suprising (to us) The results came quickly. Within a week his moods evened out- by a month his belly disappeared. He stopped getting sick all the time and eventually even started growing a TINY bit. all of his "severe" asthma problem just, simply went away.

I don't know how the Lord made it work for us. It doesn't make sense on paper that we were able to keep with in our strict budget. But it was what Jack needed, regardless of what the Dr.'s told me, We knew it was the difference he needed. Here we are 5 years later with a extremely loud, happy, healthy 7 year old boy, with the sweetest heart you will ever meet.

Our challenges with diets and food didn't just end there. Going Gluten free is HARD and emotional. I questioned for a long time if Jack would ever " feel normal" in class and at birthday parties, each day as he opens his lunch. But the Lord decided to help jack out, we now have THREE children who can not tolerate Gluten! I recently joined my kids in effort to stop the migraines plaguing my days, if your wondering, yes it worked, I am also gluten free now. But that doesn't end the mother hood worries, or the sadness I myself, often feel myself when I look at a table full of brownies I can not eat. But I have to add, I always instantly feel blessed to have this perspective to know what my kids are ALSO going through.

A year and a half ago, I went in search of real answers, I wanted to know if Jack had Celiacs or a Gluten intolerance. Once again the test results came back that he had no issues with wheat. The Dr. told me to give it to him, that I shouldn't even be worries about it. I think a part of me hoped the Dr. was right, so I did. Jack was a mess. On nebulizer treatments constantly. He was so weak that he struggled to even run around the bases at t-ball practice. We took him off wheat, after some time, he was fine again. During that time, We  found out jack was allergic to dairy, eggs, peanuts and beef among other things.

Once again we found our selves facing life altering dietary changes. BUT he became stronger and healthier with his new diet. He even ( officially last Sunday!!!) grew out of the Church clothes he has been wearing since before kindergarten. He is my only child whom I never have to buy clothes for.

Living this way may be different. Some may consider it hard, I have people congratulate me for being so " committed" to our diet. But in this I most certainly do not deserve the praise. First because the Lord has literally held my hand through all of this, by sending angels to help me and teach me and even by often downloading random recipe ideas straight to my brain( seriously I couldn't come up with this stuff on my own!). These things I was blessed with. 2. I can not imagine being so selfish to compromise his diet ( or the others) for my convenience over his health.

As I looked back with mike last night, and found myself in tears (sad and happy) over the years or struggles, triumphs and heart break, over food gluten in particular, I find myself thankful for the wonderful community we are now a part of. I feel blessed to serve with people who are as passionate about Gluten free living as our family, and I feel hopeful that some day I can find Jack answers. But until then, I will rely on the Source that has lead us through it all., the Lord.

1 comment:

Hugs from mom said...

That is amazing. My journey has been very similar. I now have three who don't eat wheat and four who don't do milk (including my husband). I decided to go with my heart, and the spirit and not the doctors test results. We have been all the better for it. The most amazing thing is that might kids don't ever complain when they can't have something at school. That tells me a lot.

I hope things continue to get easier and better for you and your family.