getting healthy!

This is a long story. It will bore most of you. If you want to skip the details, I totally understand and to show no hard feelings? Here's a Cliff Notes version, so you can stay in the loop, somewhat:

Caleb was sick. His parents were scared. God gave direction. The Doctors gave nothing (but bills). The Internet was a resource. We eliminated wheat and gluten. Caleb feels much better. We are thanking the Great Physician!
Our youngest boy hasn't been well for a long time. Caleb's symptoms (lethargy. low appetite. easily irritable. stomachaches. constipation. headaches. leg pains. brain fog and difficulty concentrating. dark blue under eye circles. canker sores.) have always been there off and on over the years, until this Fall when they came with suitcases, settled in, and decided to STAY.

His skin got extra pale (and the poor kid has enough of his Moms coloring to never be more than two shades from alabaster, anyway...) and soon the bags under his eyes began to deepen to a purple shade that caused everyone to ask "Is Caleb sick?" And THAT was the question.
Was he? Was the laying all over the counter with his head in his hands, drama? or exhaustion? (for Caleb's been known to put on a show). The way he would slowly answer every question with a drawn-out "huh?" and the staring off into space with glazed eyes? Was that an avoidance tactic with his schoolwork (for Caleb's been known to try and wiggle out of his academics) or was it a true inability to concentrate? Were the nightly headaches a ploy to get out of bedtime? Were the stomachaches to get out of eating dinner? (of which he only wanted the starch part-the rolls, the rice, the potato....turns out that craving can be a sure sign or intolerance)
We were just never sure.

So we tried a few things. We took him to the opthamalogist for a vision test to see if that was what was causing the headaches. (nope. perfect vision.) Besides we could tell it had something to do with his eating because the symptoms seemed clustered around mealtimes. He has a very low and notoriously picky appetite (his brothers outgrew this picky eating stage by age six or so but Caleb has gotten worse over time) The signs seemed to point to hypoglycemia, which makes sense since I suffer from the same malady. So we took him almost completely off sugar, and upped his protein intake...(and this is not easy to do with a child who only eats about a dozen things! protein choices were mainly yogurt. peanut butter. occasionally some cheese.) This dietary struggle did seem to help a bit, but didn't make a big enough change to convince us it was the total answer.
Then, just a few weeks ago, Caleb's teacher at Bible Study Fellowship was so concerned about him that they retrieved me from the Women's Study to come up and get him. They mentioned his under eye circles (so part of his face that now I was, sadly, just used to seeing him that way) and his lack of alertness (well some 9 year olds are kind of tired by 6 pm, right?) and how he "must be getting the flu" and I am thinking no. THIS is his normal. I was feeling kind of impatient, as I marched up the stairs to his class. I was pretty sure that my dramatic son just didn't want to finish his Moses lesson and he was about to get a little talking-to...I'll never forget coming around that corner and seeing him, sitting there. My eyes were opened and I gasped when I saw this child. It was like I saw him for the first time in weeks, and it hit me that he WAS NOT ACTING. This baby was pale and frail and looking up at me with scared eyes. When I pulled him onto my lap and asked carefully "what hurts?! what is wrong?" He started to cry softly and said "I don't know" while burying his head in my arms. And I promised him then that I would find out and do all I could to help him feel better. Then, (and I am so ashamed to admit this.) for the first time since he was sick, I started praying for wisdom.
That night John reassured me we would get our son to the Doctor, that very week. I started looking around on the Internet for information on allergies, asthma, anything that might explain why our little guy's health seemed to be detiorating. Celiac disease kept popping up, as I was searching the Web based on Caleb's most prevalent symptoms-the brain fog and fatigue. The rest kind of came and went, but the exhaustion and glazed look were almost always there (but especially after eating). One of the little known signs of gluten intolerance (which leads to celiac disease) is weak dental enamel and canker sores. I sat up in my chair reading this, because it has always perplexed me why the same brushing routine with all three of our kids equaled not ONE cavity (yet) for Sam and Josiah, yet Caleb suffered with a mouth FULL of fillings and crowns by the young age of 7? And he has canker sores once a month, minimum. All his other symptoms lined up too, with ALL of them on the list. Caleb occasionally has constipation and gas but none of the symptoms that I had associated with celiac (IBS, diarrhea, digestive troubles are most common). So I felt like we were getting close to an answer now, but we certainly weren't going to let the unknown Internet diagnose our precious child.

Next, we took him to the Doctor and asked for full bloodwork, including a fasting glucose test to check on the hypoglycemia, a full celiac panel, anemia, and anything else the Dr. might suggest.
Caleb's urinalysis showed bilirubin spilling from his liver (more frantic Internet searching when the Dr shrugged her shoulders and said "not sure?") and the bloodwork came back with concerns about his kidney function and a low white blood cell count. I felt like my deep hunch that it was gluten intolerance was now blown completely out of the water. THOSE things (kidneys, liver, white blood cells) weren't on any list I'd read. Then my God and I did some wrestling over my fears for my youngest baby as I read all the WebMD diagnoses with these fresh facts. I felt led to keep searching on these various celiac kids forums. There I read from REAL parents, what their actual children had gone through...what the symptoms were, what the Drs said, what they had experienced. You see, there is no cure for gluten intolerance except not to eat gluten. So there is no medicine, no profit to be made, therefore no drug company knocking itself out to find the answers. So you won't find much information out there, but a grass-roots kind of campaign of people banding together and sharing their experiences and helping each other get well. (and that's pretty wonderful, isn't it?)
I dig a little deeper, and find it. I found actual patients diagnosed with all three issues and one research project based on low white blood count and celiac disease. It seems the intestinal tract produces inflammation as it battles the gluten, resulting in these symptoms: a low white count (which explained why Caleb is always first to get sick, last to heal) and an overtaxed liver and kidneys from processing what is, basically, poison to his body. a ha! So we might STILL be onto something!? but what to do now?

Without health insurance, our little visit to the Dr was over $700.00 and if we had paid twice that and gotten answers we would be thrilled. But what we got was "We have no idea. It's not celiac because the numbers aren't high enough. But if you give us more money we'll try to figure it out." According to the research I've read, gluten intolerance is progressive. Our bodies are remarkably strong and we can eat foods that are poisoning us (anyone heard of McDonald's?) for YEARS before the damage is extensive enough to quantify. When you are sensitive to this (wheat, barley rye) the villa in your intestines get stunted more and more over years of exposure to gluten until finally (in your 30s to 40s) you are diagnosed with celiac disease, IBS, or a full blown auto-immune disorder (such as Crohns or lupus) brought on by your body's exhaustion. Because Caleb's numbers weren't high enough, the Dr's said nope, not celiac. And I agree-I don't think he HAS celiac disease. yet. However he has a lot of symptoms related to gluten INTOLERANCE. And gluten intolerance, left untreated, becomes celiac disease.

S0 we came home, talked it over and decided there was nothing to lose in just trying this theory out. Short of an endoscopy (going in surgically to see how the villa in the intestines are actually reacting) there is no other way to diagnose celiac except with a "gluten intolerance test". 6 months gluten free, allowing the body to heal-watching for symptoms to start fading, etc and then? A big old pastry (or two!) and see what happens, and if it truly affects you physically.
There was nothing to lose with trying it out (except my panicky realization that the only things I can get this boy to eat have gluten in them?! he might starve to death!)
So John and I agreed to jump in with nothing but a hunch, a Web of strangers and the peace that comes after prayer...
Caleb hasn't had wheat since Nov 18.
He has a canker sore right now and he was super exhausted last Sunday morning. We were worried that "it" (whatever IT is) was back but soon discovered he had hidden his new flashlight in the bedcovers and had been reading books most the night before. But since Nov. 18, he hasn't had a headache. No tummy problems. He is flying through his schoolwork each morning with no problems. He is running outside with his brothers again. He is smiling and giving hugs like he used to, instead of sitting in sullen silence. He asks for seconds and wants a snack every 2 hours. He is sleeping deeply. He is getting better.
So now and then I will post updates on how he is doing, and maybe list some of the products and recipes we find as we discover this new way of eating/cooking.

His favorite sandwich now? (see above) peanut butter on popped corn/rice cakes!