Blog, Caring for our Bodies, Making a Home, My Health Journey

Gluten Intolerant is a thing.

My youngest son, Shane, is a ball of energy. He started walking (climbing, falling) at 9 months old and hasn’t stopped since. For someone like me who is constantly cautious, and having my oldest son who is almost equally as cautious as I am, Shane has served as a source of many frightful and interesting adventures. He is smart, funny, witty, and always keeps me on my toes.

Around the time Shane was 11 months old, he was weaned from nursing. It was then that the symptoms started, although I didn’t know that at the time, starting almost instantly with constipation. For the next several years we battled this painful ailment. Me, taking the advice of doctors, and Shane suffering through it. Treatments ranging from prune juice, and more fiber (ie. grains), to enemas, which we only attempted once-terrible! Also suggested, were things like laxatives, in small doses, and castor oil, which we did not do.

During his toddler years, he had extensive dental decay, which lead to extensive dental work at a very young age. I didn’t really understand this since my oldest son never had any dental problems, and didn’t even have a cavity until he was 10 years old.  We had seemingly done the same things for both of them regarding oral care, so I couldn’t figure out the huge difference in outcome.

By the time Shane was 7, he had had broken his left wrist once and right wrist twice resulting in hard casts, he also had injuries resulting in soft casts, or splints (for fingers). All of these incidence were the result of small falls (except the time he leapt off the swing!), or were sports related. I always just attributed this to his high energy and fearlessness.

When Shane was in first grade, he started getting stomach aches every day. Every. Day. Once, Shane told me that he had been reprimanded for moving around in line, and when I asked why he had been moving around, he explained to me that when he stood still, his hands and feet would ache. They would ache whenever he was still. I started noticing him tire easier and at times seem lethargic. I didn’t know what to do. I was at a loss.

Throughout this time I talked to a woman who had recently been diagnosed with Celiac Disease. We talked about the symptoms she’d experienced and the changes she had made in her diet.  I started reading everything I could about food, and Celiac. I read articles, blogs, and books like “The Gluten Effect”, gathering as much information as I could.  I took Shane to the doctor and he ran blood tests, including the test measuring antibodies to check for Celiac. His blood tests all came back normal. So, towards the end of Shane’s first grade year and after convincing my husband, we decided to try a gluten free diet for Shane. Since I had started experiencing my own health issues, and had had Epstein Barr Virus the year before, I decided to go gluten free along with Shane, to see if it would help.

The Results

Shane experienced results immediately. The daily stomach aches stopped. After a week or two he stopped having severe constipation and his bowels started moving regularly for the first time since he had stopped nursing. I stopped having acid reflux and heartburn, which had been pretty severe, so I appreciated this very much.

When we were about 2 months into our gluten free journey, and Shane was continuing to have improved symptoms including less achiness and more energy, Shane had his appointment at Pittsburgh Children’s Hospital. Because children’s bodies tend to heal quicker than adults, he suggested putting Shane back on gluten for the 2 weeks leading up to his endoscopy, where they would check to see if indeed he was Celiac. Celiac is determined by antibodies present in blood and by the amount of damage to the villi in the stomach lining.

So that’s what we did. For 2 weeks we put Shane back on gluten and it was terrible. His symptoms immediately returned and some worse than before.  He experienced stomach aches, severe headaches, constipation, change in behavior and mood, and extreme fatigue. We had the scope done and then met with the doctor afterward where he said “We can’t say it’s Celiac”. There wasn’t enough damage or inflammation to be able to call it that. When I told the doctor about his great improvements while being gluten free and the horrendous symptoms that returned when it was reintroduced, his advice was “Well, you could keep him off of it for a couple months, than try again.” What?! Why? Every time he eats it, he gets a stomach ache and a long list of various symptoms. Why would I purposefully and knowingly do this to my child?! Convenience? Medically acceptable? Because you say it’s O.K.?

No. No, we will not do that.

From this point on, Shane has been gluten free and so have I.

Shane, my monkey!
     Shane, my monkey!

The Pushback

Anytime you do anything that is out of the norm and isn’t widely understood, you’re going to get pushback. We experienced some of this. Although, they may be well-intentioned, it really doesn’t help when people don’t support you and your choices for your family.

One of the things that often goes along with being gluten free is a sensitivity to dairy products. For about 6 months to a year Shane needed to limit his dairy intake or have lactose free products, like milk and ice cream. So, on one occasion someone decided to confront me (just a few months into being gluten free) on this “risky” diet, and possible health repercussions from not eating gluten and dairy. They also took this opportunity to lecture me on a few other things.

As I stood there taken aback, I thought, this person has many of their own health struggles and I don’t think they’re the best source of medical information or advice.

I can’t remember everything that was said verbatim, as it was several years ago, but I remember the exact setting and how I felt in that moment.  I explained that you cannot be gluten deficient, that the dairy free or lactose free was for a short amount of time and Shane was still getting plenty of calcium, and they would find that their other “concerns” were unfounded if they just looked up the information. I thanked them for their concern and said we would be sticking with the gluten free “thing” regardless of what anyone else thought. Then I walked away.

It was not the first or last time we have met with other peoples disapproval. I’ve heard the word “deprived” on multiple occasions, but it takes no more than a thought and remembering how sick he was, or a glance at him, now 14, and how he’s thriving.

Today

We are still careful. Because Shane is gluten intolerant, he has a compromised immune-system. He rarely gets sick, but when he does I make sure he’s getting more nourishing foods, and plenty of rest.

We don’t do things perfectly. Shane definitely eats too much sugar, but he’s learned to make good choices about food and snacks and what his body needs.

He hasn’t had a broken bone since going gluten free 6 years ago. His adult teeth have come in healthy, strong and beautifully straight. He rarely gets stomach aches or has digestive issues. He hasn’t complained of aches and pains in years, besides the ample amount of bruises, cuts, scrapes he gets from being himself-very active! He is growing, healthy, vibrant and full of life.

I am very thankful for this!

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