17 December 2008

sad news, but not the end of the world
(in case you were worried)~

I've written lots before about Glen and Anna being diagnosed with Celiac Disease last winter. It costs us $400 to have each person tested, and while Samaritan Ministries does reimburse us a couple of months out, we have to front the money. So the plan has been to test one person at a time as we can. None of the other kids have obvious issues, the only one the was somewhat on my radar was Ethan.

Ethan is my stocky, funny guy. His personality brings me indescribable joy and laughter every. single. day. Of course all my children hold a special, unique place in my heart, but Ethan's is different. I've always felt the need to protect him a little more for some reason. Although he does get over things very quickly, little things, when they happen, are just the absolute end of the world in his mind. Missing shark? Well, he might as well die and go to Heaven right now because life on earth is just not worth living without his great white shark.

On the other hand, he finds the greatest joy in little things. He loves to read, just like his mother. You cannot find him sitting down, or often even standing up for that matter, without a book in his hand. I don't know how many times he's read the back of the same cereal box. Too bad I can't just put his schoolwork on there :o)

Anyway, he was the next one I wanted to have tested for Celiac. I wasn't really worried about him, he wasn't having digestive issues like Glen and Anna, but I've learned over the last year that since Celiac affects absorption of nutrients in the small intestine, that it can manifest in countless ways.

There were a couple of things that caused me to choose Ethan next. First of all, he is very small for his age. He is somewhat solid, but short. The guy is seven in a couple of weeks but still wears a 4/5 shirt and 5t pants. T...as in toddler. He can't wear regular 5s, it has to be 5t. The doctor has never been worried as Glen and some of the other guys in his family are on the short side. He also always seems to be in a bit of a brain fog. That seems somewhat of a contradiction as he is very smart, loves school, and love reading, but as his mother who is with him virtually all the time, I can just tell he seems a little cloudy sometimes.

So anyway, I chose him next. I was so hoping, and praying that his test would be negative. Unfortunately, it wasn't. He, like Anna, carries two Celiac disposing genes. Normal antibody levels are supposed to be under 7, his came back at 41 and 34. As a reference, Anna's were only 14 and 12. Numbers aren't a real clear picture, but it does tell us that his body is fighting the effects of gluten more strongly than Anna's. And not only that, but his body is also producing a strong antibody reaction to dairy. I've been able to deal with the gluten issue fairly easily, but the dairy really throws a wrench in the picture. Thankfully, the little bit of research I've done has said that if I can get the gluten response under control, the dairy may resolve itself.

I am heartbroken. Like I mentioned earlier, little things are a big deal to him. He takes such simple, boyish delight in peanut butter sandwiches and milk. Not to mention things like ice cream, chicken tenders, the occasional donut, etc. He's my child that asks me in the morning what's for lunch and dinner. I haven't had the heart to tell him yet. He knows he was tested, but it's not something he's even thinking about. Glen and Anna are troopers, they like a wide variety of food, and what they can't have, for the most part, I've been able to cook alternatively. Everything else, they've just been able to deal with without too much frustration. Anna also kind of likes being "special" and getting special attention in group settings. She freely admits this ;o) Ethan is going to have a much harder time with it, I'm afraid. He doesn't so much care to be singled out because he's different, and he thrives on routine. He looks forward to little things so much and I hate to take away things that are so basic, but that are such a part of his normal, every day life. He would be perfectly happy to have a peanut butter and honey sandwich with milk for every meal for the rest of his life, I think. I am praying to be able to find a yummy bread that I can make that he will like. Sandwich bread has actually been one thing I've not made a priority as Glen and Anna were never really sandwich people.

So please pray for me, and for him. I'm going to deal with the gluten issue before the dairy one and we'll go from there. The gluten can cause physical damage to his body, that could eventually result in things such as diabetes, cancer, etc., not to mention that I'm now wondering if it has been affecting his growth, but the dairy isn't as serious. I am praying that the dairy becomes a non-issue. I am just so sad for him. I would so appreciate your prayers.

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Anonymous said...

i'm so sorry. my 6 year old daughter was diagnosed w/ type 1 diabetes 2 years ago and i experienced similar heart break.
i will definately pray for you both.

Jonine said...

I am so sorry to hear this. I know how difficult this is. I have a close friend who is a celiac and I've suspected that I am a celiac in the past two years. My son has definite allergy issues and when I was trying to figure out what his problems where we went off wheat and I could not get over a major number of things with me that got better. I wasn't look to see any difference in me!! My bruises on my legs cleared up and I stopped getting new bruises, constant belching went away, bloating gone, stomach aches gone. I can very much identify with the "brain fog." We don't have insurance and there isn't any way for me to get tested. I have about 75% of the typical "symptoms." I 'm trying to figure out WHY I started eating wheat again! It is so difficult to give up BREAD! It's like taking a blanket away from a blanky baby but my issues are still here and when I lay off wheat even for a couple of days I feel so much better.

"How can it be a large career to tell other people’s children about arithmetic, and a small career to tell one’s own children about the universe? How can it be broad to be the same thing to everyone, and narrow to be everything to someone? No; a woman’s function is laborious, but because it is gigantic, not because it is minute. I will pity Mrs. Jones for the hugeness of her task; I will never pity her for its smallness." ~GK Chesterton

2012 November

2012 November