I don't think I realized just how long this gluten-free diet journey was going to be when it all started.
Nor did I understand just how difficult it was to steer clear of gluten.
March 2009 was a long time ago.
I had so many hopes and dreams back then. I really expected this to be a journey to health.
Nor did I understand just how difficult it was to steer clear of gluten.
March 2009 was a long time ago.
I had so many hopes and dreams back then. I really expected this to be a journey to health.
It's been 10 years since I first went gluten free, and almost that long for hubby, and I'm still struggling to get gluten completely out of my life.
I still make mistakes.
My choices are not always the best, but I do what I can to keep myself safe.
I still make mistakes.
My choices are not always the best, but I do what I can to keep myself safe.
Part of the problem is the lack of celiac awareness. The lack of non-celiac but gluten intolerant awareness plays a role as well. The fact that hardly anyone takes you seriously is a biggie.
Every day I run into another newspaper or magazine story that is flaming those with celiac for diagnosing themselves or non-celiac gluten sensitivity. While they toss those with physican-diagnosed celiac disease a wink, it just shows ignorance.
Every day I run into another newspaper or magazine story that is flaming those with celiac for diagnosing themselves or non-celiac gluten sensitivity. While they toss those with physican-diagnosed celiac disease a wink, it just shows ignorance.
Both celiac disease and gluten intolerance are real. It isn't all in your head!
May is Celiac Disease Awareness Month
As most of you know, I'm not fond of the FDA's gluten-free labeling law.
It sucks.
It doesn't do anything to keep celiacs and gluten-sensitive individuals safe.
It was designed to benefit the food manufacturer.
Yes, it defines the phrase "gluten free," but gluten free no longer means gluten free.
It sucks.
It doesn't do anything to keep celiacs and gluten-sensitive individuals safe.
It was designed to benefit the food manufacturer.
Yes, it defines the phrase "gluten free," but gluten free no longer means gluten free.
For newbies, it just muddies the water.
The wheat starch now allowed in gluten-free foods, foods processed in a facility that also processes wheat, and even foods that test up to 19 ppm of gluten, are not gluten free.
Yet, the FDA claims that they somehow are.
It's no wonder that a lot of us are still sick.
The wheat starch now allowed in gluten-free foods, foods processed in a facility that also processes wheat, and even foods that test up to 19 ppm of gluten, are not gluten free.
Yet, the FDA claims that they somehow are.
It's no wonder that a lot of us are still sick.
May is celiac disease awareness month.
It's supposed to be a month dedicated to helping the public understand what celiac disease and gluten sensitivity are all about.
We have been encouraged to explain:
We have been encouraged to explain:
- what gluten is
- how it affects us
- and just how dangerous it is for us to be exposed to even the smallest crumb of gluten
- No one is going to listen to you.
- Most people are not on your side.
- Most people feel you are the bad guy.
- Many feel you are obsessed with gluten and over-the-top.
The bottom line? Most people just don't care.
That's the truth that rarely gets talked about. People in general just don't care about the needs of those with gluten-related disorders.
So why do we expect them to?
We are like a group of struggling salmon swimming upstream against the rushing tide of public opinion easily swayed by those in the public eye.
For some reason, the masses think that a newspaper reporter or an author that stoops to regurgitating the latest news story knows more about being gluten free than we do.
Strange world we live in, isn't it.
For some reason, the masses think that a newspaper reporter or an author that stoops to regurgitating the latest news story knows more about being gluten free than we do.
Strange world we live in, isn't it.
Okay. So WHAT is Gluten?
The simple answer is that gluten is the protein molecules found in wheat, barley, and rye.
Some people go further than that and claim that the protein in corn and other grains are also problematic for celiacs and should be avoided, but I'm not one of them.
I did a two-year stretch where I avoided dairy and corn as much as I could in order to start the healing process, but it wasn't easy and it didn't really work.
Some people go further than that and claim that the protein in corn and other grains are also problematic for celiacs and should be avoided, but I'm not one of them.
I did a two-year stretch where I avoided dairy and corn as much as I could in order to start the healing process, but it wasn't easy and it didn't really work.
Dairy free and corn light were the best I could do. I stayed sick, and after a while, I gave up and just focused on gluten.
Unless you want to live on gluten-certified dried beans, non-enriched rice, and grow all of your own fruits and veggies to avoid the corn-laden sprays and cornstarch-dusted cellophane wrappings, you won't be able to completely avoid corn.
It's too prevalent in our society.
It's even more invasive than gluten is.
Most people who believe they are corn free really aren't.
It's too prevalent in our society.
It's even more invasive than gluten is.
Most people who believe they are corn free really aren't.
The proteins that are problematic for celiacs and those with non-celiac gluten sensitivity are the gliadin in wheat, hordein in barley, and secalin in rye.
These proteins have been tagged by the immune system as invaders. When present in the stomach, small intestine, or if they manage to find their way into the bloodstream, organs, skin and other body cells, they are attacked by the immune system.
No one knows why.
These proteins have been tagged by the immune system as invaders. When present in the stomach, small intestine, or if they manage to find their way into the bloodstream, organs, skin and other body cells, they are attacked by the immune system.
No one knows why.
Celiac Disease is an Autoimmune Disorder
No matter how much newspaper reporters talk about celiac disease being a digestive disorder it's not.
Celiac disease is not about the inability to digest gluten.
No one digests gluten.
The gluten molecules pass through the digestive process, in the same way that fiber does, and are eliminated.
This happens with everyone.
In those with celiac disease, however, something out-of-the-ordinary is going on.
Celiac disease is not about the inability to digest gluten.
No one digests gluten.
The gluten molecules pass through the digestive process, in the same way that fiber does, and are eliminated.
This happens with everyone.
In those with celiac disease, however, something out-of-the-ordinary is going on.
Gluten triggers the junctions that keep the intestines tightly weaved shut to open up like little doors. While this happens in everyone, the time those doors are open is extremely short.
For those with celiac disease, the doors stay open a very long time. They don't know why. Celiac researchers have simply watched the process going on. That is as far as they've gotten.
For some reason, this doesn't happen in those with non-celiac gluten sensitivity, only those with celiac, which is why the small intestines are not normally damaged in those with NCGS.
Gluten is getting into parts of the body, but no one knows how yet. The claim is that the gluten molecule is too large to pass through the skin, but scientists haven't looked at the role of air passages yet.
For those with celiac disease, the doors stay open a very long time. They don't know why. Celiac researchers have simply watched the process going on. That is as far as they've gotten.
For some reason, this doesn't happen in those with non-celiac gluten sensitivity, only those with celiac, which is why the small intestines are not normally damaged in those with NCGS.
Gluten is getting into parts of the body, but no one knows how yet. The claim is that the gluten molecule is too large to pass through the skin, but scientists haven't looked at the role of air passages yet.
Since flour stays in the air for up to 3 days after you cook with it, the eyes might also play a part in what's going on.
But no one really knows for sure.
What we do know is that the immune system attacks the gluten, and in some susceptible individuals anything that even closely resembles gluten, like the protein structure in the thyroid gland, and tries to get rid of it.
That attack produces inflammation. Inflammation destroys the villi in the upper small intestines.
That attack produces inflammation. Inflammation destroys the villi in the upper small intestines.
The villi are the small hairs that absorb amino acids, carbohydrates, fats, vitamins and minerals from the food we eat. They also make digestive enzymes like those used to digest fats or break down milk sugars into an easily digestible form.
Without the hairs working properly -- either because they have been damaged, flattened, or are completely missing -- the body can't absorb nutritional value from the food we eat, and it can't digest fats or dairy products.
Without the hairs working properly -- either because they have been damaged, flattened, or are completely missing -- the body can't absorb nutritional value from the food we eat, and it can't digest fats or dairy products.
The Role of Malnutrition in Celiac Disease
The role of cross contamination is why it's so difficult for those with celiac disease to heal.
Even the tiniest molecule of gluten can trigger an autoimmune response that destroys or damages the villi and sets you up for malnutrition.
A kiss from someone who just ate a sandwich, a hug from someone who uses a wheat-based shampoo and conditioner, or picking up the remote control for the television after a a child recently touched it after eating a cookie can make you very sick.
Even the tiniest molecule of gluten can trigger an autoimmune response that destroys or damages the villi and sets you up for malnutrition.
A kiss from someone who just ate a sandwich, a hug from someone who uses a wheat-based shampoo and conditioner, or picking up the remote control for the television after a a child recently touched it after eating a cookie can make you very sick.
Gluten it sticky.
It's difficult if not impossible to wash off. It gets into cracks and crevices and won't come out.
It's difficult if not impossible to wash off. It gets into cracks and crevices and won't come out.
Once the villi is damaged, malnutrition results, but also a host of other stuff too.
All of those gluten molecules running around in the bloodstream cause all sorts of allergies and other havoc. Wherever they are, no matter what the organ or body cell, the gluten molecules can be tagged and attacked by the immune system.
All of those gluten molecules running around in the bloodstream cause all sorts of allergies and other havoc. Wherever they are, no matter what the organ or body cell, the gluten molecules can be tagged and attacked by the immune system.
Usually, people with celiac disease have high CPR marker counts due to inflammation being rampant throughout the body. And no, it's not about saturated fat, sugar, or eating inflammatory foods.
The swelling and pain come from gluten cross contamination.
It only takes one single spec of sticky gluten to set the whole immune system into a tizzy.
You don't have to eat a whole sandwich.
Less than one crumb will do it.
Even breathing in the steam from a pot of boiling pasta can make you sick for weeks afterward.
The swelling and pain come from gluten cross contamination.
It only takes one single spec of sticky gluten to set the whole immune system into a tizzy.
You don't have to eat a whole sandwich.
Less than one crumb will do it.
Even breathing in the steam from a pot of boiling pasta can make you sick for weeks afterward.
The Only Treatment
Most of us with celiac disease were sick for many years before we finally got diagnosed.
We're quite used to not feeling well.
In fact, I have been sick for so long, I don't even remember what it feels like to feel good.
My doctor kept running tests, but all of the tests came back normal. In fact, she said I was the healthiest patient she had.
It took many years to figure it out.
Most doctors don't think to test for celiac disease if you're fat.
We're quite used to not feeling well.
In fact, I have been sick for so long, I don't even remember what it feels like to feel good.
My doctor kept running tests, but all of the tests came back normal. In fact, she said I was the healthiest patient she had.
It took many years to figure it out.
Most doctors don't think to test for celiac disease if you're fat.
Our obsession with gluten and keeping ourselves safe is not an obsessive-compulsive disorder no matter how strange it looks. Being vigilant is essential to avoid the potential for autoimmune disease to continue to multiply into additional autoimmune conditions or for body cells to develop lymphoma.
Living with and dying from malnutrition is an ugly way to live in and leave this world, but that's the fate a lot of us have been assigned to.
That's the cold, harsh world we live in.
Living with and dying from malnutrition is an ugly way to live in and leave this world, but that's the fate a lot of us have been assigned to.
That's the cold, harsh world we live in.
Currently, the only treatment for celiac disease and non-celiac gluten sensitivity is a gluten-free diet.
While drugs are being experimented with by the drug industry, they only lessen the symptoms when you have been glutened. They won't allow you to eat a non gluten-free diet.
While drugs are being experimented with by the drug industry, they only lessen the symptoms when you have been glutened. They won't allow you to eat a non gluten-free diet.
So making the gluten-free diet journey is the only hope we have of living a somewhat normal life.
It really isn't all that normal for me though.
I often feel like I live in a bubble. I have a wonderful life online, but in my physical reality, I scrutinize every single bite of food I put into my mouth.
It really isn't all that normal for me though.
I often feel like I live in a bubble. I have a wonderful life online, but in my physical reality, I scrutinize every single bite of food I put into my mouth.
What Happens When You're Glutened?
If I relax the vigilance, even a bit, I end up spending at least three days in the shower and have to endure a host of ugly symptoms associated with celiac disease:
- feet and elbows crack and bleed
- feet become peppered with an itchy rash
- stomach hurts
- joints swell and I can't bend my fingers
- shooting pains in my hands and ankles
- I have trouble walking
- I have no balance and fall a lot
- vertigo gets worse
- nausea
- migraine headaches
- chronic fatigue
- brain fog
- neuropathy
- insomnia
- canker sores
- thyroid goes into high gear (hyperthyroidism)
This isn't a simple allergy folks.
An autoimmune reaction comes with nasty consequences, and they don't go away overnight. Destroy the villi, and I have no way to digest fats or dairy until they heal.
Destroy the villi, and I start having symptoms of malnutrition.
Do that often enough and the autoimmune issues will multiply. In other words, you'll get sicker and your world will become more restricted, rather than less.
An autoimmune reaction comes with nasty consequences, and they don't go away overnight. Destroy the villi, and I have no way to digest fats or dairy until they heal.
Destroy the villi, and I start having symptoms of malnutrition.
Do that often enough and the autoimmune issues will multiply. In other words, you'll get sicker and your world will become more restricted, rather than less.
Celiac Awareness: We've Got a Long Way to Go
Setting aside a month to talk about celiac disease and non-celiac gluten sensitivity is a nice gesture, but until enough people in the world actually care about someone other than themselves, it won't change anything.
We can talk until we're blue in the face and come June, newspaper reporters -- hell bent on stirring up controversy -- will still be bad-mouthing non-celiac gluten sensitivity and telling their readers it doesn't exist.
We can talk until we're blue in the face and come June, newspaper reporters -- hell bent on stirring up controversy -- will still be bad-mouthing non-celiac gluten sensitivity and telling their readers it doesn't exist.
It's all in our heads.
Why? Because they believe that's the right thing to do. Controversy helps them achieve their financial goals.
The best we can hope for is to try and educate one person at a time, but even that is going to take a long time to accomplish because if they don't have gluten intolerance themselves, they simply won't understand.
The power of suggestion is too strong. The media uses repetition to anchor what they want you to believe into your mind if you're not careful enough to evaluate what you hear.
That's the tide we are fighting.
The power of suggestion is too strong. The media uses repetition to anchor what they want you to believe into your mind if you're not careful enough to evaluate what you hear.
That's the tide we are fighting.
People look up to doctors, nutritionists, and the media as someone more qualified to tell them how things really are. They don't trust their own gut.
That doesn't mean we shouldn't try to help people understand what gluten intolerance really is. It just means that we shouldn't expect a whole lot out of people who haven't been touched by the disease.
That doesn't mean we shouldn't try to help people understand what gluten intolerance really is. It just means that we shouldn't expect a whole lot out of people who haven't been touched by the disease.
The cold, hard truth is that we've got a long way to go before celiac awareness becomes a reality.
The best article I've read on the impact of Gluten on living. Definitely a social share. But it raises a bigger issue: It seems to me that just having a "doctor" specialize in Gluten isn't enough. This seems to be a cross specialization disease within the medical industry. It may be the first I've heard of. It affects the whole lifestyle. If the pharmaceutical companies can't eradicate this disease, then the medical establishments will need to change their treatment approach. Every doctor that deals with any part of the body will need a gluten free model and approach. This disease may be one of the most aggressive in scope for anyone who has it.
ReplyDeleteDoctors are basically ignorant when it comes to celiac disease, unless they've been touched by it somehow themselves. I cringe everytime a newbie tells me their doctor sent them to a nutritionist or dietician because they didn't know what to tell them except for don't eat gluten. We're basically on our own unless we're lucky enough to have insurance that will cover a celiac specialist and we live near one.
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