Celiac Disease and Being Alone

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Here is the truth: celiac disease can be a very lonely disease.

Not many people have it (one in 100 people) and stories of its apparent absurdity travel around the public like a bad rumour. What isn’t a rumour is how lonely one person can feel when THEY ARE THE ONLY ONE DIAGNOSED WITH IT WITHIN ANY GIVEN STRETCH OF LAND/COUNTY/CITY. Some of those diagnosed keep to them selves. Some of those diagnosed might to be worried to be truthful about their disease and therefore never get to meet others with the same feeling of loneliness. Having a disease like celiac and being the only one with it indoor family can make for some trying times.

Hell. Even if you’re they only one, defending yourself without backup is terrible.

There is nothing wrong with feeling alone when you’re diagnosed with celiac. But, know that there is support out there and people out there and organizations out there that have it and deal with it and can help you get through ANY troubling times you might be having.

I’m one of the lucky ones. I consider myself lucky because am a diagnosed celiac, I have nothing against this disease. I’m lucky because I have backup, backup in the form of my mother who is also diagnosed with it. She has been diagnosed as long I as I have. Her and I talk about it, compare notes. Argue about it. Having a celiac partner makes things a lot easier.

It truly is grand to have my mother diagnosed with celiac, because I count on her and trust her and have mega-support from her all the time.

I was hoping to do that with my young nephew.

There was a time, when my nephew, at four years old was put on a gluten-free diet and, as bad as it sounds, I was excited that he was. For my own selfish reasons, I wanted to be his cool older uncle who Had to eat gluten-free food with him at family functions and when we traveled in and around the province.In my own selfish ways, I was happy he had to eat gluten-free, NOT diagnosed with celiac disease, but on the same diet I was on, and placed on it via  medical professional.

Then he got tested for celiac disease.

Then it was found out he no longer needed to be on a gluten-free diet.

Then I felt like I was alone again.

Yes, as I said, my mother also has celiac disease (because its a hereditary disease) but our connection together as kin and medically diagnosed was different from a small child. I was heart broken when I found out my nephew didn’t have celiac and could go on eating gluten-full food as he grew in a strong, independent and well rounded person. I thought maybe  I was going to have another male in the same boat as me, but, his journey was meant be different from mine. And I can’t be more happy and excited for him. I just thought, I had these notions that him and I would go on this journey together; eating gluten-free and talking about our lives with this restriction.

Not anymore. I felt alone.

Maybe I’m just jealous.

Maybe my selfishness is in fact a misplaced jealously of a small boy who doesn’t have to explain why he eats different and doesn’t have to worry about food at parties and functions in the public. However his life goes, I’ll still love him.

Celiac disease is a lonely disease when the wrong people are by your side. Or NOT at your side. To find those with celiac, don’t hide it. Yell it from the roof top. Tell the world.

Celiac disease doesn’t have to be lonely.

Celiac Symptoms: Did I Suffer from Brain Fog?

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I am unsure if in all my years of being undiagnosed with celiac disease I ever suffered from the dreaded brain fog I hear so much about. I have heard that it exists and that when a diagnosed celiac ingests gluten they can suffer from this crazy symptom.

But what is ‘celiac brain fog’?

Well, in classic and true celiac fashion, the symptoms of gluten induced brain fog can range on so many levels and affect celiacs in different ways, or not at all. I had to dig a bit to find out some details and came across an article from Allergic Living (which you can find by clicking HERE). Articles and papers that touch on celiac symptoms always centre on a specific ‘few’. Remembering that all diagnosed celiacs suffer differently.

Question: what triggers brain fog? eating gluten. If you have celiac disease and need to be 100% gluten-free and you accidentally or purposely eat gluten, you trigger a mess of symptoms in your body, and brain fog is one of them, or CAN be one of them.

Thinking about how others have been affected by brain fog and how I don’t think I have ever been in that situation… I looked back; pre-diagnosis, to see if maybe I did suffer from brain fog at some point. I can’t actively think about a time when this might have happened to me. Then I looked further and further back to the days I was in school.

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Here is me, way way way pre-diagnosis in elementary school (and a classic attempt to embarrass my sister). Look at those folded hands.

 

There is no denying any fact that i was never an ‘A’ student in both high school and elementary school. There was also never really a time when teachers and I got along.  I was never a bad kid, just a kid that had ‘room for improvement’. At best I was maybe a ‘C’. I never paid attention in class and maybe that was a part of the fact that I was undiagnosed with celiac disease until I was 27 years old. Well out of any school or educational system. That could or could not be attributed to undiagnosed celiac disease, or maybe I was just that kind of kid (we’d have to find a few of my old teachers to figure that out).

Pin pointing events in my childhood that could be attributed to undiagnosed celiac disease and brain fog is real tough. Over the course of my school days, there were never any real stories where I was ever confused or felt like I was lost in my own thoughts, or as brain fog suggests; just fogged. I guess I never just applied myself to my full potential. I was just a regular kid.

While brain fog is a symptom of celiac disease, I can almost say with the utmost positivity I have never experienced it. Celiacs that have suffered from it, recant stories of things that I can’t relate to. Terrible pooping and airship=like gas buildup yer, but brain fog seems to have been a sidestep for me.

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Me. High school. Probably 1998. Pre-beard. Pre celiac diagnosis. Photographed by the wonderful Jen Squires all the way back then (check out her website HERE).

 

That’s a plus for me, because I had a whole host of other issues.

With the 200+ symptoms of celiac disease, not everyone gets the same set. Every individual diagnosed with celiac disease usually presents differently and it affects them differently. That’s why it’s always important to get any symptom you suspect to get checked.

I have never suffered from brain fog and I empathize with celiacs that do and have. But that does’t mean I haven’t suffered due to undiagnosed celiac disease.

My symptoms were the exact opposite of my Mother who was diagnosed with celiac when she was 50 years old. Proof not every celiac suffers the same.

This is a part series (see a part HERE and HERE) where I will recant some classic stories from my past and you can see for yourself, that every celiac symptom might be different. And that there is no set symptom to be diagnosed. But maybe we share stories. If you have celiac disease, you’re not alone. There are a lot of us out there supporting you. We’re all in this together.

Celiac Symptoms: Every Headache I Ever Had

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Since I was diagnosed with celiac disease in 2008 and I was 27 years old, I often look back on my life at specific moments or events in my life and wonder about how bad I might have been glutened. I relate those times with my undiagnosed celiac and as I have grown to understand what my symptoms were and how I am now, I see now that I was just a walking-talking-ticking time bomb of a gluten ingested mess.

In the early 2000’s I was suffering from terrible headaches.

Sometimes they would be horrendous. Sometimes they would be light pains in the back of my skull. But at no time did I not have a headache. Some days it was just a way of life. Something I just put up with. What I do know, was that, all of it was annoying. I hated it.

Since it was close to a good half dozen years before my celiac diagnosis, doctors were still hesitant on what was causing all of this discomfort in the back of my head. I had blood tests. If I remember correctly, I had an MRI (or some scan like that. It was so many years ago) and I ended up on medication. This seemed to be the answer to all my problems.

If I knew then what I know now, I totally would have mentioned a food elimination diet. In those early years of 2000, I drank beer and ate pizza. I had sandwiches and ate Twix candy bars by the case. It’s not a reflection of how poor I ate but a reflection of all the food I was eating that contained gluten. Since I am now diagnosed with celiac disease and need to be 100% gluten-free, I kinda get the impression where my headache problems were coming from.

While I was taking medication for my headaches I was still eating gluten. The idea of celiac never entered into anyone’s mind at this point. So why would I care about gluten? I was around 22 years old, I had never even heard the word gluten.

Did the medicine help? Yes.

The one big issue with the medicine was that it was an anti-depressant.

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This is not a picture of me from the early 2000’s when I had all the headaches I’m talking about in the blog. It’s from the other day. Just a simulation. 🙂

I was never diagnosed with depression, but the doctor seemed to think that it would help with these unexplained headaches and pains. And, yes, as I stated; it did help with the headaches, and my wife said that the whole time I was on the drug I was a zombie. I just walked around like nothing really mattered and I was just living day to day. The headaches disappeared but this new kind of Jordan emerged.

I stopped taking the medication. And as far as I can remember, the headaches came and went. Sometimes stopping, sometimes staying. Always just kind of there.

Memories are funny. That was a time in my life where nothing out of the ordinary was happening and the pressure from work and life wasn’t any different from any other day. So why did I have headaches? There can be all kinds of answers, what it seems like is that the most common answer is that I was still a young man undiagnosed with celiac disease.

As an adult, I see that my headaches might not have been caused by undiagnosed celiac disease, but remember, headaches CAN be a symptom. Now-a-days I get headaches from stress or weather change or hangovers or dehydration or stress and I am 100% gluten-free due to my celiac disease and I still get headaches. Maybe more than a few of my headaches were caused by undiagnosed celiac disease. At the time my doctor didn’t connect the two, but knowing what I know now; there is a strong possibility some of my headaches were the result of me eating gluten when I should have been gluten-free because I hadn’t been diagnosed with celiac disease.

Now it’s just stress that causes me headaches.

And beer.

And stress.

This is the first a series (see part one HERE) over the next little while, where I will recant some classic stories from my past and you can see for yourself, that every celiac symptom might be different. And that there is no set symptom to be diagnosed. But maybe we share stories. If you have celiac disease, you’re not alone. There are a lot of us out there supporting you. We’re all in this together.