I’ve written about gluten in my post Gluten: The Good The Bad and The Ugly and there I talk about my experience with gluten sensitivity.
In this post I wanted to delve a little deeper into my experience rather than all of the scientific aspects. I adore exploring the science of nutrition, but it’s just as important to get the personal side of things.
Contrary to what a lot of people believe to be the case with celiac disease, I was not born with it (in fact I wasn’t born with any of the allergies I’ve developed), and I know plenty of others who have diagnosed celiac disease but who had grown up eating wheat just fine and got sick later in life.
I had no allergies as a child. Zero. Zilch. Nadda.
I ate plenty of wheat and other gluten-containing grains over my childhood, teen years, and into my twenties. It wasn’t until my early thirties that I became sick with symptoms that didn’t seem to be related to one another and a root cause of those symptoms that, for a very long time, went unknown/undiagnosed.
While I had developed other allergies prior to this happening to me (I have the oral allergy syndrome and I’m also sensitive to dairy – both developed in early adulthood), I had continued eating gluten for quite some time after removing these other foods from my diet.
When I look back on when and how my gluten sensitivity symptoms arose, I realize it had been going on for a few years before it got bad enough to stop me in my tracks. My estimation is that I got progressively sick over a period of about two years.
Initially the symptoms were mild enough so that I didn’t really pay attention. Some I could ignore, some I thought would be solved by exercising or eating less treats, and then one day I was just plain sick and couldn’t ignore it any longer.
What were these symptoms? Here is a list:
- Sore joints (particularly my back, my neck and one of my wrists). I tried to solve these issues with lots of massage, chiropractic, and anti-inflammatory drugs when it got bad.
- Bloating. A lot of bloating. This got progressively worse over the couple of years. At first I thought I had gained a bit of weight and was hard on myself about exercise and what I ate. The ridiculous part was that at the time I was probably the most active I’ve been in my life, logging hundreds of kilometres per month (and a few months 1,000 km) on my bike. Talk about delusional about ‘not being active enough’.
- Asthma. This is something that I developed in my late teens and has shown up with all of my sensitivities. When I’m stressed, out of balance, or eating things I react to I get asthmatic. Today I understand that’s my body screaming at me to do something (or stop doing something, in the case of eating foods I’m allergic to) about whatever is going on.
- Brain fog. This came later; only a few months before I was diagnosed with a gluten sensitivity. It manifested as having a really hard time focusing and needing frequent breaks from work or whatever else I wanted to concentrate on.
- Exhaustion. A type of exhaustion where no matter how many hours I slept, I was never rested. Where I could quite literally sleep all day long. This got bad a few months before my diagnosis and I found myself sleeping at least 12 hours per day and often having naps in addition to that. I also stopped riding my bike so much (yeah, no kidding – couldn’t keep that up feeling the way I did!).
- Skin boils. This was a difficult one for me. I didn’t have acne growing up so I didn’t understand the difference and I didn’t know what this was. It most definitely was not acne. It was deep, pustular sores that didn’t always surface and were extremely painful. The ones that did surface (or that I forced to) left scars on my cheeks. And they were isolated to just my cheeks, nowhere else.
- Extra bloating, runny nose, and stomach upset after eating. This didn’t happen until late in the game. I didn’t have too many digestive issues until a few years into developing this sensitivity. This is, again, something that most people don’t understand – many of us have very few, if any, digestive problems so we don’t immediately consider food as being the culprit.
- Gas. When I did start to have some digestive issues the biggest one was an inability to digest protein properly. I know it was protein because if I ate a meal that was really high in protein or if I ate protein supplements I got really awful gas. I was convinced I couldn’t digest protein supplements and that all protein powders were bad for people. What I didn’t know was that I had simply become unable to properly digest them. Today I have no troubles digesting protein supplements.
- The final symptom that got me to visit my Naturopathic doctor (though I had gone in to see my medical doctor about my sore wrist and she brushed me off about it and told me to take some Advil) was when I started having blood in my stool. Every day. It was bright red – that means that it was not coming from higher up in my digestive tract. If it had been dark blood it would have been coming from higher up in the GIT or stomach (something called occult blood which is a sign of stomach ulcers or other really bad problems – really bad – and I knew this, having been working in the medical field for some time, so I was relieved that it at least wasn’t dark blood). What bright red meant, for me anyway, was that there was damage happening at the end of my large intestine (the colon).
When I went to my ND he suggested we do some tests. We did IgG food allergy testing and we also did a whole panel of fecal testing since he was concerned I could have a parasite from travelling.
The tests came back showing a huge number of antibodies for gliadin (one of the two gluten proteins that we know of – the other protein is called glutenin).
I was crushed when he told me the news. Well, first I had to learn what this meant – I knew very little about gluten sensitivity. I LOVE bread, baked goods, pasta, and everything related to gluten! Top that off with an already restricted diet and I was beside myself.
I was very sick at that point and taking many days off work and was very concerned about the most recent symptoms, so I immediately started a gluten-free diet. My ND also got me started on a regimen to start healing my digestive tract. There were a few components to this plan, but what I will say has become a favourite choice as a practitioner myself as a result of my own experience is slippery elm.
Within 2 weeks I was starting to feel significantly better. It was like a miracle!
(except, really, it’s not a miracle, it’s a testament to how food affects everything we do and how we feel every day)
Feeling Like You Have To Justify/Prove A Food Sensitivity
To confirm the diagnosis I went to western medicine and got the celiac disease blood test (an IgG blood test for the gluten proteins) and I also did some more tests for parasites to be sure. Again, the parasite panel came up with nothing and the celiac test came up positive.
As a side note, I don’t really know that it was necessary to confirm this through other testing. Sure, it doesn’t hurt, but I’m starting to realize how those of us with health problems like this tend to get a zillion tests to figure things out (which are sometimes necessary, but not always), often simply to get ‘buy in’ from our peers. That if we hadn’t put ourselves through hell to confirm out what the original test showed then nobody would believe what is happening with us. Just a little food for thought.
Maybe we don’t really need to prove anything to anyone.
This is an interesting presentation by a medical doctor – about how difficult it was for him to get people to consider gluten was making his patients sick.
I had an appointment 2 months later with a Gastroenterologist to… well, I’m not really sure what my family doctor really wanted me to get out of that, but hey, he was nice and it was good to get an expert’s point of view on the whole matter anyway.
At the time the only way that celiac disease was confirmed was through an endoscopic biopsy (while still eating a diet full of gluten). They take a sample of your intestinal lining to see if it’s damaged.
The Gastroenterologist didn’t really see the point of doing that since our outcome would be the same: gluten-free diet. Since I was already getting better on the diet he said to continue on with it as long as it served me to do so. He suspects I have celiac but wasn’t concerned with having to label me with it and put me through invasive testing to do so.
Today you can get genetic testing done to confirm if you have the gene for celiac disease and I believe that when you combine that with blood work showing the presence of antibodies against gluten proteins and you have confirmed celiac disease (without necessarily having to have a biopsy).
Here is my take on it though – whether it’s gluten or some other food that doesn’t seem to work for you, just listen to your body.
Plenty of people will have their opinions. They may believe you. They may not. It’s really not their business anyway – do they have to live in your body? No.
Tests can be false positive or false negative. Or perhaps it’s not the protein in the food that we can get tested for that you are sensitive to – maybe it’s a chemical the food is being sprayed with. Who knows.
The tried and true test is this: how does this food make you feel?
My experience with gluten and celiac disease is actually not that unusual. I know a lot of people who developed some form of gluten sensitivity as an adult.
There is a lady I like to follow who says: “Are we allergic to food or to what’s being done to it?”
Her name is Robyn O’Brien if you care to follow her. That is certainly something to think about.
For those of us who have confirmed celiac disease – who know they have the gene – why is it then, that many of them don’t develop celiac disease until adulthood?
(and perhaps many never develop the disease at all)
Well, that’s something that we are only beginning to understand.
Something called epigenetics.
A topic for another post, perhaps.
The Cole’s Notes on epigenetics:
Our genes don’t dictate our fate alone, but rather they can be turned on or off by what we eat, how we deal with our life stressors, what we believe about ourselves and our relationships, and the chemicals we are exposed to in our environment.
What’s the take-home message?
Learn how to manage what you can.
What is it that you can control and what is out of your control?
Focus on what you can control so you can make the best choices for yourself and your family within your abilities.
Continue to learn.
Take responsibility for your own body and your own health and well-being.
YOU are the one who lives in that body –
treat it well, do what works for you, ignore the haters.
(but show them some love – they need it)
Travelling With Food Sensitivities
Finally, I had to deal with a lot of this while travelling. That was definitely not easy. I lived and travelled abroad around the time that these symptoms of gluten sensitivity were starting to peak for me.
I’ve been lucky enough to continue to travel, and enjoy it, even with all of the food restrictions I have. It definitely took a lot of fumbles and stressful situations to figure out how to do it successfully.
To learn more about figuring out your sensitivities, check out my program called:
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