My son was diagnosed with Celiac Disease almost two years ago, when he was weeks away from turning 4 years old. My husband and I dove into finding out everything we could about the disease and what it meant to be gluten free.
Of course the first thing we did was head to Whole Foods and buy a million gluten free labeled items. We even took a cooking class there. It was great information, great food, but we simply couldn't and can't afford Whole Foods. So we slowly learned what to buy online and at the Kroger down the street.
I thought I knew how to handle living gluten free. But just like when a baby masters a certain phase and you think okay, I know what I am doing, they move onto a new phase. That is what raising a child with Celiac is like in my opinion.
Some days my little guy who is now 5 (and don't forget the 1/2, 5 1/2 he is quick to remind you and anyone else) is feeling great and handling being the odd man out quite well. Other days it gets to him. I can tell he just gets tired of being different. He is too young to understand how lucky he is that his disease can be managed with diet and not medicine, needles or surgeries. At 5 (and a 1/2) fitting in at snack time is a BIG deal.
I thought I knew how to handle helping him. I thought I knew a lot.
But it took going through my own digestive issues to really have a better understanding. Last summer I started feeling just all around run down and bad. My stomach hurt and after every meal my stomach would be so bloated I looked four months pregnant. This went on for months. Until I got pneumonia in September and didn't eat for a few days. Even though I was bedridden with a terrible illness, in some ways I felt better than I had in months. My stomach wasn't bloated and it wasn't hurting. That is what prompted me to go the gastroenterologist.
Bloodwork and an endoscopy showed that I do not have Celiac, which surprised me. I am still in the process of finding out what exactly is going on with me. But I do know this....not eating gluten (and most dairy) makes me feel better.
So since a week before Thanksgiving, I have been gluten free.
You'd think it would be easy because we are a mostly gluten free household, but it has been surprisingly difficult. Especially around the holidays.
Lunch with a friend is different. I suggest meeting for coffee instead because it is just easier.
Every rest area on our road trip was different. My son and I ate McDonald's fries while the rest of the family pigged out on a fast food treat. The continental breakfast included at our modest hotel had nothing I could eat.
I am old enough to know that I should be grateful that a seemingly simple dietary change makes me feel better, makes my stomach hurt less. And I still felt a little left out. A little different.
And I grew skeptical and cynical. I didn't trust restaurants that said "gluten free." Or well-meaning friends that probably accidentally used the same knife to cut regular bread and gluten free bread.
I sort of lost my mind, but I gained a whole new appreciation for what my son has to go through. And what he will go through. From the mistrust of food to the stomach pain when he is "glutenized."
My advice to all parents of children who are newly diagnosed with Celiac disease is to go a week or two without gluten anywhere. No exceptions. Just to get a taste of what their child's experience is all about. Because you may think you know, but you don't.
Of course the first thing we did was head to Whole Foods and buy a million gluten free labeled items. We even took a cooking class there. It was great information, great food, but we simply couldn't and can't afford Whole Foods. So we slowly learned what to buy online and at the Kroger down the street.
I thought I knew how to handle living gluten free. But just like when a baby masters a certain phase and you think okay, I know what I am doing, they move onto a new phase. That is what raising a child with Celiac is like in my opinion.
Some days my little guy who is now 5 (and don't forget the 1/2, 5 1/2 he is quick to remind you and anyone else) is feeling great and handling being the odd man out quite well. Other days it gets to him. I can tell he just gets tired of being different. He is too young to understand how lucky he is that his disease can be managed with diet and not medicine, needles or surgeries. At 5 (and a 1/2) fitting in at snack time is a BIG deal.
I thought I knew how to handle helping him. I thought I knew a lot.
But it took going through my own digestive issues to really have a better understanding. Last summer I started feeling just all around run down and bad. My stomach hurt and after every meal my stomach would be so bloated I looked four months pregnant. This went on for months. Until I got pneumonia in September and didn't eat for a few days. Even though I was bedridden with a terrible illness, in some ways I felt better than I had in months. My stomach wasn't bloated and it wasn't hurting. That is what prompted me to go the gastroenterologist.
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| Lovely picture of me. |
So since a week before Thanksgiving, I have been gluten free.
You'd think it would be easy because we are a mostly gluten free household, but it has been surprisingly difficult. Especially around the holidays.
Lunch with a friend is different. I suggest meeting for coffee instead because it is just easier.
Every rest area on our road trip was different. My son and I ate McDonald's fries while the rest of the family pigged out on a fast food treat. The continental breakfast included at our modest hotel had nothing I could eat.
I am old enough to know that I should be grateful that a seemingly simple dietary change makes me feel better, makes my stomach hurt less. And I still felt a little left out. A little different.
And I grew skeptical and cynical. I didn't trust restaurants that said "gluten free." Or well-meaning friends that probably accidentally used the same knife to cut regular bread and gluten free bread.
I sort of lost my mind, but I gained a whole new appreciation for what my son has to go through. And what he will go through. From the mistrust of food to the stomach pain when he is "glutenized."
My advice to all parents of children who are newly diagnosed with Celiac disease is to go a week or two without gluten anywhere. No exceptions. Just to get a taste of what their child's experience is all about. Because you may think you know, but you don't.
3 comments:
We found out in March of this year that 3 of my 4 kids have celiac disease. It has been a struggle to help people understand what it means and what they need to be safe. Some people seemingly don't care, or just don't want to try to understand. There are some that don't understand, but try hard to be helpful. I so appreciate that. My husband has also been sick. All of these things tied together have made us as a family more sensitive to the needs of others. It is so hard to really get it 'til you walk a mile in their shoes. Thanks for your blog. It's just nice to be able to say 'there is some one who gets it!'
I get it sister. Thanks for reading.
I love this one, Angela! As you probably know, my kids are allergic to milk, so not quite the same, but similar experiences with wanting to fit in. I went a month DF trying to figure out my own stuff like you. It was so hard!
Lori Stull
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