I normally write happy blogs with fun recipes. Of course I share about about my tiny struggles with this glutenfree diet, the products, and I share my frustrations with some limitations, but the victory is always in the recipe. I want to show that living glutenfree and being stuck on this diet is not the end of the world.
But this blog is different. It's a tale. It's the tale of my oldest son (and partly my youngest too) and it's the tale of a glutenfree momma who shakes her head in dismay everytime she sees glutenfree diet and weightloss in one sentence. I see people on Instagram tagging their sleek pictures of their daily intake of celery sticks and super fruits with glutenfree and all I can think is: "Do you have any clue that that is absolutely not what this diet is all about?!??" Because I know what this diet means to my son, and it represents anything but weightloss. It's about survival. It's about hope. It's about getting healthy again. It's about strength. It's about fitting in knowing you will never fully fit in.
To me living a glutenfree life isn't sexy. It is not the latest weightloss solution. It is everyday reality and it is for life, not for a couple of months. It's not about living on naturally glutenfree products that are low-calorie. Here's why glutenfree isn't a sexy new hype.
1. You get immensely sick
My now 6 year old son had a rocky start. He was born 6 weeks early, but my little fighter fought on. He grew, he developed the way he should and he thrived. Till he was 6 months old. From the moment he ate his first normal cookie, his first sandwich. He didn't want to eat. He threw up after every meal. He had endless diapers with endless heaps of horrific smelling poo. He was always tired. His belly turned into a big bloated belly like you see with kids starving in Africa. If a virus was around, he got it too and worse. He stopped growing. Every meal was a huge fight. A fight with a teeny tiny baby who kept his teeth clenched together and a mom and dad who knew he had to eat something to keep him alive. We were in and out the hospital. We got assigned to a dietician. She told us to give him more porridge and such. In retrospect I can hit myself over the head for forcing him to eat that. I've apologized to my 6 year old a gazillion times for that. And it got worse, and worse and worse. Finally the paediatrician decided to test him on cystic fybrosis and celiacs disease. Thank god it wasn't the first and the bloodtest for celiacs failed. It got so bad he needed to get admitted. At almost 11 months he weighed 6 kilos. Most kids weigh about 10 kilo's at that age. They fed him through a tube. Again. (Why do I always cry when I put that in black on white?) We were so scared. The docs drew blood again. Again it wasn't enough but his ratings were through the roof. A final and last bloodtest was done at 11 months, but I already had a different kid. Because he was eating glutenfree. My boy was and will always be a celiac.
My now 6 year old son had a rocky start. He was born 6 weeks early, but my little fighter fought on. He grew, he developed the way he should and he thrived. Till he was 6 months old. From the moment he ate his first normal cookie, his first sandwich. He didn't want to eat. He threw up after every meal. He had endless diapers with endless heaps of horrific smelling poo. He was always tired. His belly turned into a big bloated belly like you see with kids starving in Africa. If a virus was around, he got it too and worse. He stopped growing. Every meal was a huge fight. A fight with a teeny tiny baby who kept his teeth clenched together and a mom and dad who knew he had to eat something to keep him alive. We were in and out the hospital. We got assigned to a dietician. She told us to give him more porridge and such. In retrospect I can hit myself over the head for forcing him to eat that. I've apologized to my 6 year old a gazillion times for that. And it got worse, and worse and worse. Finally the paediatrician decided to test him on cystic fybrosis and celiacs disease. Thank god it wasn't the first and the bloodtest for celiacs failed. It got so bad he needed to get admitted. At almost 11 months he weighed 6 kilos. Most kids weigh about 10 kilo's at that age. They fed him through a tube. Again. (Why do I always cry when I put that in black on white?) We were so scared. The docs drew blood again. Again it wasn't enough but his ratings were through the roof. A final and last bloodtest was done at 11 months, but I already had a different kid. Because he was eating glutenfree. My boy was and will always be a celiac.
My mom and my son Thijmen, he is smiling, but he was so immensly sick!
My other boy started to show some of the same symptoms a little over a year old. There was that poo again and he cried every night due to pain. He slept endless hours and he was grumpy. And above all, he preferred his brother's glutenfree food over his own. We didn't wait around long. The bloodtest came back inconclusive, but the paediatrician understood if we would test the diet on him to see if we would see a change. He is on it till this day. One day we will glutentest him again. But only when he is old enough to understand. For now, he is thriving.
2. Because a biopsy of the small intestine isn't sexy.
To be absolutely certain and to complete the diagnosis you need to go through a biopsy of the small intestines to see how bad your intestines have been damaged by the autoimmune disease you've been diagnosed with. They check to see how many villi you have left. Villi absorb the nutrients in your body, and if you are a celiac your body will react to the gluten and will attack and wipe out the villi. The less villi you have, the less nutrients you can absorb.
To be absolutely certain and to complete the diagnosis you need to go through a biopsy of the small intestines to see how bad your intestines have been damaged by the autoimmune disease you've been diagnosed with. They check to see how many villi you have left. Villi absorb the nutrients in your body, and if you are a celiac your body will react to the gluten and will attack and wipe out the villi. The less villi you have, the less nutrients you can absorb.
My kids never had the biopsy. Why? because they told us that my kid had to be planned in at the only hospital that performed them and it could take up to 6 weeks. We didn't have 6 weeks. We couldn't face putting our kid through another 6 weeks of glutenhell. We were tired of fighting. My husband was exhausted. So was I. Now I wish I had fought on and had demanded that they speed up the process, but I just couldn't at that time. We got what we came for. A diagnosis. But I know my kids will have to face all that some time. Several times. Because we will need to know how their health is, how they are keeping up. But it's not sexy. It's scary actually.
3. Because Celiacs Disease effects your health in more than one way
If there's a virus around, my kids pick it up. And they have it worse than anybody else. Your health starts in your intestines, and my kids intestines are their weak spot. So they end up sick too often. My oldest son even spent his 2nd birthday in the hospital. Flu and chicken pox combined were too much for his tiny body to handle. We feared the food tube again. This time it didn't come to that, but it will always haunt him. Many Celiacs often develop other foodintolerances or -allergies on top off their glutenintolerance. Not for my boys, but for those people eating healthy is even more of a struggle.
4. Because grocery shopping takes forever
After almost 5 years of living a glutenfree life & being a glutenfree momma you'd think I'd know what to buy. Nope. I still have to check every label, because companies change recipes and your once so glutenfree product ends up containing flour or wheat starch. And so many products contain gluten, it's insane. Why, why, why?
So I check, check, triple check everything. And don't just trust that glutenfree label screaming at you coming from the packet. Read the declaration. Because some companies believe in the "glutenfree is sexy" hype and put it on the packaging to make you buy it. Even when it's produced in a non-glutenfree invironment. Which means it is contaminated, possibly. That is not glutenfree. That's dangerous.
5. Because cross-contamination is a bitch
Every tiny bit of gluten, any crumb can make a celiac sick. That's all it takes to damage their intestines. And it takes years and years to undo that damage. It took my oldest soon about 2.5 - 3 years before he seemed to absorb all nutrients and started growing properly. He is now amongst the tallest kids in his class, but it took him a long, long time. Meals in our house have been about "How much food can we get into our boy so that he'll absorb enough nutrients" for so long. I don't wish that on anybody. Dinner should be fun, not that stressfull. I don't want that ever again. Ever.
Anyway, I'm drifting off. In my case that means I get to wash my hands a gazillion times a day, rinse my mouth before I kiss my kids goodbye and have seperate utensils, carving boards, etc etc for my kids. Those gluten cannot come anywhere near my kids food. My kids have their own butter, peanut butter, preserve, mayonaise etc. Because if I dip my gluteninfested knife into their own jars, it's contaminated. I even have a double oven so I can use one soley for the kids. And have I mentioned many arts & crafts stuff contains gluten as well? Playdoh, glue... I need to throw it out. Gluten. No fun.
6. Because you'll always be the odd one out
And when this hype thing is all over, guess who will still be on this diet, who will always be the odd one out? Yes, people who truly have to live glutenfree and they have it for life. Because they have a glutenintolerance, a wheat intolerance or gluten or wheat allergy.
They get to hope that at a party the host or hostess has thought of them. That maybe they can eat a piece of glutenfree cake instead of a celery stick that may be touched with gluteninfested hands. Or, in my kids case: get a treat from their own candybox at school or daycare. I'm so incredibly thankful to some parents of kids from my sons class. When they get him a treat too, they make his day.
My kids and other people who have no other choice than to live a glutenfree life get to hope too that when they go to a restaurant (that they've called in advance, because spontaneity is a nono in their case) hope they won't have to say: "Is this truly glutenfree? I can't have this if it has been in contact with gluten at all. No, I cannot skip it this one time, it won't be ok this time. It makes me ill. No... wheat contains gluten, not potatoes. (Seriously, some people think that!!!)"
They cannot cheat. Not ever. They cannot quit. Ever. They have this thing for life. They will always have to explain themselves whereever they go. And that's ok. But it's not sexy.
Now do I feel sorry for my kids? No, because I know it could've been 10 times worse. That's the reason I started this blog in the first place, to show glutenfree isn't the end of the world, you have many options and baking can be fun. I started this blog to help others with these recipes.
Now, if you recognize yourself in my sons ordeal, please go visit a doctor. If you think gluten or wheat makes you sick or is responsible for your undiagnosed ailments, please go to a doctor too and get yourself checked out. All the stuff above is worth it if you finally feel better in the end. I promise. My kids are proof. And I will be here to help you in whatever way I can.
If, after reading all this, you think your rice cake and celery stick and glam superfruits are still sexy and a glutenfree diet is a great way to lose weight... please go to the top of this blog and read it again. You've missed my point.
I thank you very much for taking the time to read this. It really is very much appreciated. I promise that my next blog will be a wonderful yummy recipe again, because that is in order.
Much love,
Wendy. A glutenfree momma for life.
