The Hardships of living with Celiac's Disease
Today, I took my oldest two children for blood work...one of the many not-so-fun things they have to do on a regular basis for the remainder of their lives due to them having Celiac's Disease. Both of them were on the lower ends of normal for Vitamin D at their yearly vitamin check...so I've been supplementing for that. They're getting re-checked to make sure the supplements are working.
They also were both getting checked for their Hepatitis B titers. Did you realize that Celiacs have an issue with absorbing the Hepatitis B vaccine? (Some studies about it: http://www.ncbi.nlm.nih.gov/pubmed/14572581; http://www.ncbi.nlm.nih.gov/pubmed/23430309; http://www.medscape.com/viewarticle/845212 in case you don't want to just take my word for it.)
...and, on top of those, my son was also getting tested to see if he cross-reacts to corn (we've been testing him for cross-reactions the past year (about cross-reactivity: http://autoimmune-paleo.com/what-is-gluten-cross-reactivity/). We're still not finished testing them all. So far, he was NOT cross-reactive to nuts, tomatoes, potatoes, or cocoa. He WAS cross-reactive to eggs...meaning they made his antibody levels go up). We were also re-checking his kidney function with this blood draw (his BUN levels have been slightly high lately. I assume due to our high protein diet...but the doctor wanted to check them again anyway).
So...lots of blood work. My eldest had to fill 4 tubes; my son 5.
Now you may be asking yourself, "What's the point of this?" The point is, this is my life. These are my constant worries. This is (for the most part) something I try not to think about, much less talk about.
I try not to dwell on what it means when those numbers come back. What if corn does make his antibodies go up? Then he can never have corn again. What if their Hepatitis B vaccinations didn't take and they need another? What if even THAT one doesn't work? What are the implications of that? What (potentially) could the poor kidney function be doing for the rest of his body? How can I fix it? I've been pumping him full of as much water/liquids as I can. What else can I do? He's already eating a really restrictive diet due to his issues and I'd hate to restrict even more...but...HOW CAN I FIX IT?!
These are the things that, when I let myself think about their Celiac's Disease, come into my head:
Am I doing enough? Is there more I could be doing? What else could I possibly be doing to help? (Which, my husband would be the first to point out, I wear myself ragged doing as much as I can. I homeschool. I cook everything (we haven't eaten at a restaurant in years). I diligently check all labels. The list goes on and on.)
(and simultaneously...)
I'm doing too much. I can't take this anymore. I don't want to. I can't. (see above husband's comment; and then...)
These are my children. I have to. I can't give up on them. They didn't choose to have Celiac's. If anything, it's my fault for giving them the genetics for it. Maybe I should've done something differently when they were younger...or even when they were in the womb. Maybe if I hadn't had so many wheat-filled items while pregnant, they wouldn't have had this.
...or was it the vaccinations? Maybe the bombardment of vaccinations were too much for their fragile immune systems?
...or GMOs/Monsanto...I know I didn't buy all organic of everything...and have used Roundup around the house in the past.
...or illness...
maybe the pneumonia my eldest had...or the food poisoning I had while pregnant with my son...
...the list goes on and on...
What I could have done...should have done...would have done differently. The neverending guilt that just seems to go round and round in circles. But, in the end, it really doesn't matter. None of it matters.
The reality is that they HAVE Celiac's disease now. There is no cure for it. They won't outgrow it. They'll have to live gluten free for the rest of their lives. I'm fine with that. I can try to make things as normal as possible for them with that.
....
But then, they throw a wrench into the works...
...
When my son found out he cross-reacted with eggs, he was DEVASTATED. He was 6 at the time. Eggs didn't particularly bother him gastrointestinal-wise (no symptoms)...but they cause his antibody levels to go up. For those who know nothing of Celiac's disease, that means that his body was attacking itself and causing intestinal damage when he eats eggs. It's very serious.
How do you explain to a 6 y/o why they can't have a food they love...especially if it doesn't seem to bother them in an obvious way? Getting rid of the wheat (which he loved as well) was easier cause he was only 3 at the time he was diagnosed. I just removed it and now it's a distant memory...but the eggs are fresh on his mind and he misses them. It's heart-rending. He (and my eldest) are getting to the ages where they know they're different. They know they're being treated differently...and they don't like it. They know I'm not doing it to be mean...and they know what will happen if they choose to eat it anyway (vomiting, diarrhea mostly...for several days...and they know it'll damage their intestines and possibly keep them from growing properly (nutritional deficiencies))...but it's something they can't change that makes them feel separate and apart. My only consolation to the situation is that at least they have each other to lean on. They may feel apart from their friends and extended family, but at least they have each other. At least they're not alone.
I, on the other hand, often feel alone. They, for now, don't have to worry about the inordinate amount of time/preparation that goes into feeding them. They don't have to worry (yet) about asking about cross-contamination issues or checking labels. They know to ask if something's gluten free...and that it's generally safer to just say "no" to whatever's being offered...but, day to day, they don't really have to think about what they eat.
They are finally getting to the ages where I can tell/teach them how to read labels and check things for themselves, but then it becomes a different matter. Will I be able to relinquish control over what they eat? Will I be able to trust them to make the right decisions? They've been sheltered somewhat with the homeschooling...but I know I NEED to prepare them for the real world...to help them to understand what things will be like for them from day-to-day. To warn them about the various situations they'll encounter...and what they should do in each one.
...and...in one sense, that terrifies me. Not so much about giving up my control over what goes into their bodies...but in how giving them the control/responsibility could potentially turn them into the bitter, angry, depressed, stress-filled mess that I sometimes am. Cooking for and eating truly 100% gluten free all the time is HARD...even more so if you've got any other food issues as my son does. Anyone that says differently is either not very strict about it or just plain lying. It's made a bit easier if you just stay away from un-processed foods...but then the overall cost can become an issue. How do I prep them for the real world while keeping their spirit and positive attitudes in tact? How do I hand over the incredible weight that this disease puts on you without letting it crush them?
I try to put positive spins on things...telling them that they're, by default, a lot healthier than the general population because of the way we're forced to eat...which is true. I try to tell them that anyone who would treat them differently because of their disease isn't really someone they should want to hang out with anyway. That their true friends would try to do things to make sure they're included. I try to explain that I know it stinks having to get blood drawn every year (mostly to check for nutritional deficiencies), but it's better to know if you've got any problems going on than not. We don't have many "treats"...but I try to give them what I can. I want them to feel "normal". I want them to feel included. I want them to feel loved.
These are the things that I worry about...and often try not to think about...though they resurface every time we have to go back in for blood work or yearly check-ups. These are the aspects that I don't often talk about. Celiac's disease has put a huge burden on my family (emotionally, physically, monetarily, etc.); but thinking of the "what if's", the "why can't I's", and the "I wish I could's" don't change the outcome. We still have to play the game with the hand we are dealt. I only hope that my children will focus on the positives instead of the negatives...and that it makes them stronger, better people.
They also were both getting checked for their Hepatitis B titers. Did you realize that Celiacs have an issue with absorbing the Hepatitis B vaccine? (Some studies about it: http://www.ncbi.nlm.nih.gov/pubmed/14572581; http://www.ncbi.nlm.nih.gov/pubmed/23430309; http://www.medscape.com/viewarticle/845212 in case you don't want to just take my word for it.)
...and, on top of those, my son was also getting tested to see if he cross-reacts to corn (we've been testing him for cross-reactions the past year (about cross-reactivity: http://autoimmune-paleo.com/what-is-gluten-cross-reactivity/). We're still not finished testing them all. So far, he was NOT cross-reactive to nuts, tomatoes, potatoes, or cocoa. He WAS cross-reactive to eggs...meaning they made his antibody levels go up). We were also re-checking his kidney function with this blood draw (his BUN levels have been slightly high lately. I assume due to our high protein diet...but the doctor wanted to check them again anyway).
So...lots of blood work. My eldest had to fill 4 tubes; my son 5.
Now you may be asking yourself, "What's the point of this?" The point is, this is my life. These are my constant worries. This is (for the most part) something I try not to think about, much less talk about.
I try not to dwell on what it means when those numbers come back. What if corn does make his antibodies go up? Then he can never have corn again. What if their Hepatitis B vaccinations didn't take and they need another? What if even THAT one doesn't work? What are the implications of that? What (potentially) could the poor kidney function be doing for the rest of his body? How can I fix it? I've been pumping him full of as much water/liquids as I can. What else can I do? He's already eating a really restrictive diet due to his issues and I'd hate to restrict even more...but...HOW CAN I FIX IT?!
These are the things that, when I let myself think about their Celiac's Disease, come into my head:
Am I doing enough? Is there more I could be doing? What else could I possibly be doing to help? (Which, my husband would be the first to point out, I wear myself ragged doing as much as I can. I homeschool. I cook everything (we haven't eaten at a restaurant in years). I diligently check all labels. The list goes on and on.)
(and simultaneously...)
I'm doing too much. I can't take this anymore. I don't want to. I can't. (see above husband's comment; and then...)
These are my children. I have to. I can't give up on them. They didn't choose to have Celiac's. If anything, it's my fault for giving them the genetics for it. Maybe I should've done something differently when they were younger...or even when they were in the womb. Maybe if I hadn't had so many wheat-filled items while pregnant, they wouldn't have had this.
...or was it the vaccinations? Maybe the bombardment of vaccinations were too much for their fragile immune systems?
...or GMOs/Monsanto...I know I didn't buy all organic of everything...and have used Roundup around the house in the past.
...or illness...
maybe the pneumonia my eldest had...or the food poisoning I had while pregnant with my son...
...the list goes on and on...
What I could have done...should have done...would have done differently. The neverending guilt that just seems to go round and round in circles. But, in the end, it really doesn't matter. None of it matters.
The reality is that they HAVE Celiac's disease now. There is no cure for it. They won't outgrow it. They'll have to live gluten free for the rest of their lives. I'm fine with that. I can try to make things as normal as possible for them with that.
....
But then, they throw a wrench into the works...
...
When my son found out he cross-reacted with eggs, he was DEVASTATED. He was 6 at the time. Eggs didn't particularly bother him gastrointestinal-wise (no symptoms)...but they cause his antibody levels to go up. For those who know nothing of Celiac's disease, that means that his body was attacking itself and causing intestinal damage when he eats eggs. It's very serious.
How do you explain to a 6 y/o why they can't have a food they love...especially if it doesn't seem to bother them in an obvious way? Getting rid of the wheat (which he loved as well) was easier cause he was only 3 at the time he was diagnosed. I just removed it and now it's a distant memory...but the eggs are fresh on his mind and he misses them. It's heart-rending. He (and my eldest) are getting to the ages where they know they're different. They know they're being treated differently...and they don't like it. They know I'm not doing it to be mean...and they know what will happen if they choose to eat it anyway (vomiting, diarrhea mostly...for several days...and they know it'll damage their intestines and possibly keep them from growing properly (nutritional deficiencies))...but it's something they can't change that makes them feel separate and apart. My only consolation to the situation is that at least they have each other to lean on. They may feel apart from their friends and extended family, but at least they have each other. At least they're not alone.
I, on the other hand, often feel alone. They, for now, don't have to worry about the inordinate amount of time/preparation that goes into feeding them. They don't have to worry (yet) about asking about cross-contamination issues or checking labels. They know to ask if something's gluten free...and that it's generally safer to just say "no" to whatever's being offered...but, day to day, they don't really have to think about what they eat.
They are finally getting to the ages where I can tell/teach them how to read labels and check things for themselves, but then it becomes a different matter. Will I be able to relinquish control over what they eat? Will I be able to trust them to make the right decisions? They've been sheltered somewhat with the homeschooling...but I know I NEED to prepare them for the real world...to help them to understand what things will be like for them from day-to-day. To warn them about the various situations they'll encounter...and what they should do in each one.
...and...in one sense, that terrifies me. Not so much about giving up my control over what goes into their bodies...but in how giving them the control/responsibility could potentially turn them into the bitter, angry, depressed, stress-filled mess that I sometimes am. Cooking for and eating truly 100% gluten free all the time is HARD...even more so if you've got any other food issues as my son does. Anyone that says differently is either not very strict about it or just plain lying. It's made a bit easier if you just stay away from un-processed foods...but then the overall cost can become an issue. How do I prep them for the real world while keeping their spirit and positive attitudes in tact? How do I hand over the incredible weight that this disease puts on you without letting it crush them?
I try to put positive spins on things...telling them that they're, by default, a lot healthier than the general population because of the way we're forced to eat...which is true. I try to tell them that anyone who would treat them differently because of their disease isn't really someone they should want to hang out with anyway. That their true friends would try to do things to make sure they're included. I try to explain that I know it stinks having to get blood drawn every year (mostly to check for nutritional deficiencies), but it's better to know if you've got any problems going on than not. We don't have many "treats"...but I try to give them what I can. I want them to feel "normal". I want them to feel included. I want them to feel loved.
These are the things that I worry about...and often try not to think about...though they resurface every time we have to go back in for blood work or yearly check-ups. These are the aspects that I don't often talk about. Celiac's disease has put a huge burden on my family (emotionally, physically, monetarily, etc.); but thinking of the "what if's", the "why can't I's", and the "I wish I could's" don't change the outcome. We still have to play the game with the hand we are dealt. I only hope that my children will focus on the positives instead of the negatives...and that it makes them stronger, better people.
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