Four weeks gluten-free and the benefits are undeniable.
As I mentioned a couple posts back, four weeks ago we had Connor tested for Celiac disease due to his chronic vitamin deficiencies and tendency to fracture easily. His blood tests came back normal. Knowing that the blood tests are notoriously inaccurate and that the only way to either officially rule out (or diagnose) the disease was by doing an intestinal biopsy (no, thanks!), we decided we would put him on the diet anyway and let it speak for itself. We never anticipated what an easy transition it would be, nor did we realize how much of a change we would see in such a short period of time. Even in four short weeks, we have seen far more improvements than we ever could have hoped for.
I have talked about this before, but on a basic level, Celiac disease can cause damage to the villi in the intestinal lining. The purpose of villi is to slow the passage of food, and to allow food particles to get trapped among the finger-like villi so the blood inside them have an opportunity to properly absorb the nutrients in the food.
![villi](https://apainlessjourney.wordpress.com/wp-content/uploads/2010/09/17-intestinal-villi-jejunum-a.jpg?w=300&h=225)
Normal Intestinal Lining/Villi
If these villi are damaged… or even missing… due to the body attacking itself as a reaction to gluten, the lining is smooth and food is not digested properly, critical vitamins and minerals are not absorbed, and the body starts to suffer in a variety of ways. The symptoms vary from person to person, and can range from darn near life-threatening, to a general feeling of malaise.
![Ludvigsson-Marsh-1d](https://apainlessjourney.wordpress.com/wp-content/uploads/2010/09/ludvigsson-marsh-1d.jpg?w=300&h=221)
Celiac Intestinal Lining
As a self-professed bread-a-holic, with two sandwich and toast-a-holic children, I thought it would be a tough transition. We love our spaghetti, mac and cheese, dinner rolls, breaded chicken nuggets… I thought all of that would have to go away. Boy was I surprised! We enjoy spaghetti and mac and cheese… just with brown rice noodles, instead. Frozen quick-fix nuggets have been replaced with THE best homemade recipe I have EVER tasted. I now make my own pizza crust, and sandwiches have just been replaced with plates of cheese, meat, fruit, veggies, and rice crackers. With a little more attention to ingredient labels, we have been cruising along just as usual and enjoying many of the same things and more. But that wasn’t even the biggest surprise…
Connor has been doing AMAZING! When we started this, we were just hoping it would help resolve his vitamin deficiencies and chronic anemia. While we will be waiting a couple more months to recheck his bloodwork, of all the changes we have seen, we didn’t even realize many of them were a “problem” until they resolved. Day one of the diet change: He was covered in bruises… he could brush up against something and get one. He was relatively pale and was having bowl movements several times a day and at risk of grossing you out, they were extra smelly, slimy, liquid, and often it looked like you just poured his dinner in his diaper and skipped eating it all together. He had a bloated belly, and although his eyes seemed well-lubricated, he rarely had tears in his eyes when he cried.
Four weeks later and almost all the bruises are gone, his skin has more color to it, he fills his diaper only twice a day and it is NORMAL , his belly is flat, and if the little guy gets upset, his eyes water and tear like they should! Not only that, but although he always seemed to be a happy and energetic boy, he has gotten even more energy and is REALLY happy! His whole demeanor has changed for the better and it is obvious to anyone that knows him… Connor is feeling GOOD!
Speaking of feeling…. there is more. I am going to have to preface this with another little science lesson. ๐ I know Connor’s condition can be confusing- even to me- and I believe I have tried to explain it before, but I’m going to try again as I am learning more and more each day. I think it will also help put into perspective the other little bonus we are finding with the gluten-free diet!
Connor’s nerve pathways are expected to be formed normally and intact, although we have not yet done a biopsy to confirm. He feels discomfort internally (screamed from an ear infection and reflux as an infant, is uncomfortable when he has gas or tummy troubles), but not peripheral pain (the surface, or outer part of the body, or organ… bones, muscles, skin, etc). His pain insensitivity is believed to be due to a mutation in a gene that codes for a specific sodium channel (named Nav1.7). It is exactly what it sounds like… a channel, or “hallway” of sorts with a special door that only opens to the secret knock. Sodium channels are made by proteins in the membrane of the cell. The proteins are shaped in a way that form a channel that conducts charged ions through the outer membrane of the cell. Basically, a gateway in which signals are allowed to pass from one side to the other.
![640px-Sodium-channel.svg](https://apainlessjourney.wordpress.com/wp-content/uploads/2010/09/640px-sodium-channel-svg.png?w=450&h=192)
There are different things that tell these channels to either open or close, depending on their purpose. In the case of pain sensation, these doorways are located near the ends of pain sensory nerves.ย When the body(cells) receive painful stimuli, they produce small changes in voltage (the secret knock), and it is the job of the Nav1.7 channel to amplify these signals, open the door, and send them on their way via the nerve pathways to the brain. Proper levels of these signals are what triggers the neurons to fire so you “feel” the pain. Any changes in the coding for that gene can cause the protein to be misshapen or function improperly. Although there a few mutations that can happen and affect various parts of the protein, I’ll simplify it in terms of a “door.” Think of it this way… there was either a page missing or a typo in the instructions on how to make these channels, so even though “pain” comes a knocking, the door doesn’t open the way it is supposed to. In Connor’s case, it stays closed, or doesn’t open all the way so the proper level of signals aren’t even getting out. In the case of people with some types of chronic pain disorders, their door doesn’t close when it is supposed to so WAY more signals are sent than should, so they feel far more pain than they should.
We think Connor’s “door” might be cracking open a teeny tiny teeny teeny teeny bit. Like maybe 1% of these signals are making it through, but not enough that he is getting the message. In the past, we have noticed that if he falls and bonks his head hard enough, and I mean HARD, he will rub at it. But that’s it. SOMETHING might be getting through, but not enough for him to realize it is bad. So here is where it gets interesting…
Celiac disease can cause neuropathy, which pretty much means it hinders the ability of one’s nerve pathways to transmit messages from one place to another… So if Connor is getting a few of those signals out the door, but once they are out, the paving on the road is cracked and sludgy, then even less of them are going to make it where they need to go. A couple days ago, Connor tripped and fell, hitting his ear on the edge of a table. He not only batted at it, but he had a GRIMACE on his face. He FELT it! Granted, had it been anyone else in the family, we would have been screaming bloody murder- his whole ear got really puffy and swollen and red/blue… I was afraid he severely injured it… but that was the closest thing to “pain” we have ever seen him do! So although a gluten-free diet will never change his insensitivity to pain, it may be improving his nerves’ ability to transmit what little signals he may be getting. Hey… We’ll take anything we can get!
If he feels something… even if it is just a little tingling or throbbing or something that gives him even the tiniest amount of a clue, that will give us a HUGE one-up on being able to teach him how to know when he has suffered injury. We really look forward to him getting a little older and being able to communicate what he is feeling. The researches in Florida, while they are interested in seeing him, require him to be able to do just that in order to fully evaluate his condition so we will not be going for a few more years. Someday, we may know exactly what mutation(s) he has and exactly how he is affected by it. Who knows…. maybe some day they will even find a way to repair it.
For now, I feel like things are going 900% better than they were this time last year. Connor is doing great and every day is another opportunity to learn more about him and teach him more about himself. We are so happy this diet is having such a positive affect on him and look forward seeing and sharing more good things!
ETA: I think it is worth mentioning that there were times in the beginning that I thought, “His blood tests were normal… maybe it’s not even a problem… It would be so much easier to give him a piece of toast for a snack or make a sandwich… maybe he can just eat it sometimes…” It is clearly worth the effort and the dedication is has taken to make the change. I went into this expecting things to stay the same and had we taken the blood test at face value and not given it our all, he would not be doing so much better now. Just goes to show (again) that you have to do what you have to do and never overlook ANYTHING for the sake of your little ones. Thank you so much to “L” for suggesting this to us. Yay for another victory in the fight!