Celiac Problems

Wednesday

Confessions Of A Former Gluten-Free Hoarder


The beginning of my gluten-free journey was marred with often out of stock and usually overpriced product. I endured frustrating travel throughout the GTA (greater Toronto area) just to obtain a variety of items. Sometimes I would snap up new products by the dozen for fear of never seeing them again. This was a very real possibility back then.

Living a few hours from the United States gave new meaning to cross-border shopping. Instead of getting excited about deals on clothing and electronics, I focused solely on gluten-free food. I would visit 4 or 5 American grocery stores every trip. Each visit to the US brought home a haul of food that just wasn't (and sometimes still isn't) available in Canada. 

And so began a gluten-free hoarding problem




Sale? I'll take 7 

New product? Give me 3

Not many left? I'll take the rest

Out of town shopping? Fills a suitcase

Believe it or not, there is a certain kind of stress that comes with gluten-free food hoarding. Products sometimes expired before I could use them. I would get bored of eating the same things repeatedly. Sometimes I ended up not enjoying something which I bought in bulk. Not wanting to be wasteful, I would try finding a new owner for these items. A difficult task which usually resulted in food being tossed in the bin.

I have a petite kitchen at best. Putting an excessive amount of groceries away was like playing a well-organized game of Tetris. I got so creative with my storage that I often forgot about these items. Other times, I would grab a box of gluten-free cereal and half the pantry would tumble onto the floor. It was like these poor boxes were screaming to be acknowledged.

Another drawback was that I lost sight of what is naturally gluten-free, like fruits and vegetables. I developed a need for pre-packaged food and lost sight of food prep. Super unhealthy. It was also questionable financially as the gluten-free label goes hand in hand with an often inflated price.


Over time, I eventually realised that gluten-free isn't going anywhere and have thus drawn a line between stocking up and hoarding. In fact, it's getting better. Almost every supermarket has a decent gluten-free selection. Stores are also far better at consistently ensuring these items are on shelves. Companies are also clearly labeling their gluten-free goods so that they are easy to spot. This is such a win!

As things are different now. I no longer stock up en masse. I feel healthier, happier and no longer stressed out.


The Broken Road To Awareness

Why is Celiac Disease so misunderstood? Why is there so much varying information? Why can't we all be on the same page? Why? Why? Why?

Celiac is the only disease that I can think of, where the people who are diagnosed don't even really understand it, let alone the Doctor's diagnosing it.  We are sort of left to figure it out on our own, resulting in widespread misconceptions, wrong choices, inaccurate media coverage and best of all, the pain of accidental Glutening.


Uneducated Doctors : 
If the front line is not in order, how can we expect those who have Celiac Disease to fully understand their condition? Most family Doctors have minimal knowledge about Celiac. Many of them neglect to do the proper testing and suggest that their patients try a Gluten Free diet to see how it makes them feel. In the long run, they are only adding to the misconceptions. Due to the lax in proper diagnosis, some are just assuming that they have Celiac, when in fact they don't. Others face numerous hurdles in getting an accurate diagnosis.

Another issue is with the lack of Celiac Disease specialists. People who live near a facility such as the Chicago Center for Celiac Disease research luck out. But those of us who are nowhere near a research facility, often get put on the back burner unless we fiercely advocate for proper testing and the answers to go along with it.

Not enough awareness:  Celiac Disease awareness seems to be  IS severely lacking. Due to it being virtually non existent, people usually assume that eating Gluten Free is a choice and they do not associate it with a real disease. Both those who have Celiac and those who don't are not usually fully aware how serious this autoimmune disease is. Many people are too embarrassed to speak up and make sure food is Gluten Free, some admit that they "cheat" once in a while and others just don't know where to start. 

Resources are also limited. The support and information available to those who are newly diagnosed varies substantially from City to Province to Country. Celiac is a confusing and overwhelming disease to be diagnosed with. Many people are told they have the disease and then sent on their way with no formal education about it.

Fear mongers :  
There is a never ending flood of people with personal agendas. Weather they are out to make money, or to spread misinformation in hopes of roping people into their way on thinking (anti GMO, No Grains ect.) there are many who use Celiac as a platform to preach non related issues.

Greed: 
This one touches all facets of Celiac Disease. Gluten Free food does not need to be as overpriced as it is. Period. We have come a long way and it is clearly a highly profitable market. But we are still gouged at the grocery store. Why? Because we have no choice, we are chained to the medical need for Gluten Free.

Big companies want to sell us books on how to live and eat Gluten Free.  Many individuals have started websites to offer "helpful" information to those with Celiac Disease, but unfortunately you have to pay a fee to reap the so called benefits. Also, the information which is being sold, is widely available for FREE.

Scams and the people who buy into them:
I'm not even going to list the various companies that make this list,but I will tell you what to be vigilant against. There are MANY magic pills out there, offering a way to prevent damage after eating Gluten. Some even offer a downright cure. These are SCAMS!!! First of all, if and when a cure or remedy becomes available, it will be international news. You will hear about it from those who research Celiac Disease as well as awareness organizations such as the National Foundation For Celiac Awareness, Canadian Celiac Association and Coeliac UK . Also, after a medical breakthrough, it will be years before any type of medication reaches the market. I can guarantee you won't be able to obtain it without a proper prescription either. 


Media : Can we not get some legitimate air time? Everyone from local news stations to Dr Oz has something to say about Gluten Free. The problem is that the rare time that they mention Celiac Disease, they do so in passing, like it's not the real issue. I tend to cringe when I see a news report about "Gluten Free". The newscasters never seem to educate themselves about what they are discussing and the so called specialist is usually someone who has no real background or education in Celiac Disease. Do we discuss MS or Parkinson's with a Podiatrist? No. Contrary to what one may think, not all Doctors are created equal. This is why they specialize in specific areas of health.

The question I am left with is, how can WE as a Celiac public, band together and create the necessary and accurate awareness that is vacant from our communities?

Monday

Gluten Free Grocery Shopping Makes My Head Spin




Sometimes (okay, more often then not) I wander through some serious mental dilemma when I'm grocery shopping for my Gluten Free pantry. I get this "what if" anxiety. It goes a little like this...




If I love this product, will I ever get to see it again?

What if it tastes great and then the manufacturer tweaks the recipe, in turn ruining said great product?

If I take a chance and stock up on a new product, what are the odds that I will not like it?

What if my local grocery stores stop carrying something that I buy regularly?

Does this have Oates in it? I can't tolerate Gluten Free Oates. They make me very ill and seeing them in more GF products frustrates me. 

Will the price increase if word gets out that this item is awesome? You know, just because it can happen.

Do I actually need this? Or am I buying it just because it's new and Gluten Free?

How often will this item be on sale? Maybe I should buy a lot and then play tetris with my freezer to make it all fit.

What if said item is only ever on sale once? I've seen this happen.

WHEN will the rest of Betty Crocker's Gluten Free line fill Canadian shelves? Population density baloney or not, we have the NEED and desire to purchase it! FYI they are manufactured in Canada. Yep.

Why do Organic / Natural  labelled non GF products always get shelved with my beloved Gluten Free items? 


Will I use this product before it expires? In my experience, the expiry dates are extremely varied.




Thursday

Sleep, Where Are You?

Lately I have been feeling tired. Really tired. There have been days where all I wanted to do was sleep.  With a 3 year old and work, that is not an option. Those are the days Im like a zombie. I can barely think, my appetite is nowhere to be found and I have trouble sleeping...getting that good sleep. 

I wish I could be more like my husband - close my eyes & be immersed in dreamland instantly. But Im not.It's always taken me a while to fall asleep.Lately though, there is not much of that whole deep sleep going on for me.

At times I wonder if I have accidentally ingested the dreaded gluten. It's not a far off possibility. We have a small kitchen with minimal counter space. Sometimes my little guy with stick his hands in a bowl of a gluten free snack for a bite before I can wash his hands. Often before I even notice. There are also times where hubby, as vigilant as he is, assumes safety of food without reading ingredients. I get it though, it kind of makes me shake my head to see gluten in certain food.

Months ago, my family Doctor diagnosed me with Chronic Fatigue. I didn't know what to think and I still don't. There are many different theories on this issue. I forgot about it until recently when I became so tired again. 

I hope it's something minor like stress affecting my sleep. Hopefully with Spring well on it's way, the fresh air and sunshine will help me get back to my usual self.
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