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| What is it like to be gluten intolerant in today's society? |
This is celiac disease awareness month.
And normally, when I go to Google News or Yahoo or some other news sites, I continuously run into media articles dishing out their anti-gluten-free diet rantings against those who have gone on a gluten-free diet without their doctor's permission.
Today?
I was pleasantly surprised. There were tons of positive celiac disease articles and even positive articles on non-celiac gluten sensitivity, as if it was actually a thing!
Nice improvement over last year.
Because of that, I thought I'd take a few minutes and talk about what it's really like for someone who is intolerant to gluten, regardless of whether you have a celiac diagnosis or not.
It's long past due for the celiac community and gluten-free individuals to combine their efforts and really educate people about gluten-related disorders.
Today?
I was pleasantly surprised. There were tons of positive celiac disease articles and even positive articles on non-celiac gluten sensitivity, as if it was actually a thing!
Nice improvement over last year.
Because of that, I thought I'd take a few minutes and talk about what it's really like for someone who is intolerant to gluten, regardless of whether you have a celiac diagnosis or not.
It's long past due for the celiac community and gluten-free individuals to combine their efforts and really educate people about gluten-related disorders.
The Anti-Gluten-Free Diet Movement is Harming Americans
But first, let's talk about the anti-gluten-free diet movement and how it's harming you.
Almost all of the articles I read on gluten-free diets have been written by people who believe you shouldn't remove gluten from your diet unless you have been officially diagnosed with celiac disease.
A handful of commentators do acknowledge non-celiac gluten sensitivity might be as high as 6 percent of the American population, but they also viciously state that removing gluten from the diet without a physician's recommendation is unhealthy and totally unnecessary.
Almost all of the articles I read on gluten-free diets have been written by people who believe you shouldn't remove gluten from your diet unless you have been officially diagnosed with celiac disease.
A handful of commentators do acknowledge non-celiac gluten sensitivity might be as high as 6 percent of the American population, but they also viciously state that removing gluten from the diet without a physician's recommendation is unhealthy and totally unnecessary.
The shocking thing about this attitude is that even people with celiac disease are dishing out this nonsense.
The herd mentality, along with the reaction from the media and celiac population toward gluten-free diets and non-celiac gluten sensitivity, is getting really tiring.
People are sick.
What the media is doing isn't about giving people accurate information so they can make an informed choice. It's simply parroting what the wheat industry want people to believe and do.
A gluten-free diet hurts the wheat and barley industry. That's where the whole push toward eating whole grains originally came from.
It didn't come from the medical profession.
It came from those who had something to financially gain by the American people eating more whole grains.
It didn't come from the medical profession.
It came from those who had something to financially gain by the American people eating more whole grains.
That is fact.
Telling those of us who don't have an official diagnosis that we are missing out on something because we no longer eat highly processed white-flour products is ludicrous.
Plus, for a lot of those with celiac disease and gluten sensitivity, continuing to eat grains, and especially whole grains, will keep you feeling ill.
Plus, for a lot of those with celiac disease and gluten sensitivity, continuing to eat grains, and especially whole grains, will keep you feeling ill.
Whole grains are hard to digest, and if they sneak through the gut barrier, they keep the intestines inflamed and you over-reacting to everything you eat, even gluten-free foods.
It's wacky advice to tell someone who is new to a gluten-free diet to eat lots of whole grains or they're going to be malnourished.
Those recently diagnosed with celiac disease or those who have gluten sensitivity are already malnourished.
This is due to the inflammation preventing proper absorption of nutrients, and you got that way from eating or breathing in wheat, barley, and rye.
You can continue to stay in this unhealthy condition due to the cross contamination issues that are all around you.
This is due to the inflammation preventing proper absorption of nutrients, and you got that way from eating or breathing in wheat, barley, and rye.
You can continue to stay in this unhealthy condition due to the cross contamination issues that are all around you.
It is almost impossible to completely avoid being contaminated with gluten, unless you're raising and growing your own food, but you can definitely keep it to a minimum by taking a certain degree of precaution.
Precautions that the media, and sometimes family and friends, call obsessive, unrealistic, and imposing on the rights of others who want to enjoy their white-flour goodies.
Precautions that the media, and sometimes family and friends, call obsessive, unrealistic, and imposing on the rights of others who want to enjoy their white-flour goodies.
How to Diagnose Gluten Sensitivity
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| It's not unhealthy for your plate to be lacking wheat, barley, and rye! |
There is no official test for non-celiac gluten sensitivity, like there is for celiac disease, except to go on an elimination diet.
Yet, we have hundreds of newspaper and major network commentators telling the American people NOT to do that because a gluten elimination diet isn't healthy.
It's just a fad.
It's a dangerous trend because you have to eat wheat to be healthy.
You have to eat products made from wheat and barley to get all of the vitamins and minerals you're missing out on by not eating bleached, artificially enriched, all-purpose flour anymore.
It's just a fad.
It's a dangerous trend because you have to eat wheat to be healthy.
You have to eat products made from wheat and barley to get all of the vitamins and minerals you're missing out on by not eating bleached, artificially enriched, all-purpose flour anymore.
Are they serious?
These are articles written by nutritionists or articles that quote licensed medical professionals as saying that.
Wheat is a miracle food.
They criticize gluten-free products for the cost it takes to make them really gluten free, their lack of vitamin enrichment, and their higher calorie, fat, and sugar content while holding up highly-processed foods made from white flour as being healthier.
That is what celiacs used to eat before going gluten free.
What a load of hog-wash!
If you look on the ingredient list of almost all gluten-free food products, you'll find whole grain flours and fiber being added to those products. It's rare to find something that isn't whole grain and fiber enriched within the gluten-free market today.
Wheat is a miracle food.
They criticize gluten-free products for the cost it takes to make them really gluten free, their lack of vitamin enrichment, and their higher calorie, fat, and sugar content while holding up highly-processed foods made from white flour as being healthier.
That is what celiacs used to eat before going gluten free.
What a load of hog-wash!
If you look on the ingredient list of almost all gluten-free food products, you'll find whole grain flours and fiber being added to those products. It's rare to find something that isn't whole grain and fiber enriched within the gluten-free market today.
While gluten-free Bisquick does fit into the definition of what these nutritionists and writers are calling gluten-free junk, since it's made with white-rice flour and isn't enriched with GMO corn-based vitamins, have you ever looked at the ingredient label on a box of traditional Bisquick?
It's a chemical soup nightmare!
Gluten-Free Bisquick is way more healthy than the original version.
It's a chemical soup nightmare!
Gluten-Free Bisquick is way more healthy than the original version.
What was it Like Before I Went Gluten Free?
I can understand the wisdom of reminding people about the dangers of self-diagnosis. Symptoms are signs that something is going on within the body that needs to be corrected.
However, doctors do not cure disease.
They don't fix what's wrong.
They merely control the symptoms with drugs or lifestyle changes that make life more comfortable and the symptoms less interfering in what you want to do.
There is no such thing as being healed from whatever ails you today.
They don't fix what's wrong.
They merely control the symptoms with drugs or lifestyle changes that make life more comfortable and the symptoms less interfering in what you want to do.
There is no such thing as being healed from whatever ails you today.
For example, before going gluten free, I was suffering with severe:
- heart pains
- indigestion
- diarrhea
- mouth sores
- a fallen bladder
- asthma attacks
- multiple chemical sensitivity
- neuropathy
The doc had the gall bladder taken out by a surgeon, the bladder repaired, and thoroughly checked out the heart and arteries with expensive tests because she considered those three to be the most pressing problems.
As for the asthma, she said I could undergo testing if I was concerned about my inability to breathe.
Even though I was on several inhalers and preventative meds in California, she wouldn't just prescribe what I had used before without running her own tests.
It was the same for the nerve pain.
If I wanted neuropathy meds, I had to undergo nerve testing first. In the meantime, my severely swollen right knee, vertigo, and balance problems were put on hold.
Even though I was on several inhalers and preventative meds in California, she wouldn't just prescribe what I had used before without running her own tests.
It was the same for the nerve pain.
If I wanted neuropathy meds, I had to undergo nerve testing first. In the meantime, my severely swollen right knee, vertigo, and balance problems were put on hold.
I was a mess, but she kept telling me I was the healthiest patient she had.
The arteries were in excellent condition due to the low-carb diet I was on at that time.
Test results showed the arteries to be completely clean of cholesterol and calcium deposits. In fact, the cardiologist said he has never seen arteries in that excellent of a condition before.
My kidney function, A1c, and other blood work all came back excellent as well.
Test results showed the arteries to be completely clean of cholesterol and calcium deposits. In fact, the cardiologist said he has never seen arteries in that excellent of a condition before.
My kidney function, A1c, and other blood work all came back excellent as well.
Everything was perfect.
She couldn't find anything wrong except for the continuing intestinal issues, heart pain, neuropathy, and the problems she hadn't addressed yet.
For that reason, she decided to look into the possibility of an ulcer. The diarrhea, cramping belly, and bloating from gallbladder malfunction needed to be dealt with first, she said.
For that reason, she decided to look into the possibility of an ulcer. The diarrhea, cramping belly, and bloating from gallbladder malfunction needed to be dealt with first, she said.
We Couldn't Afford More Testing
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| We could not afford more tests |
We had no health insurance at the time.
The tests and operations she'd put me through up to this point had us over our heads in serious debt.
I'm talking thousands and thousands of dollars that we owed hospitals, doctors, and other medical personnel, so I didn't go back for more testing.
We simply couldn't afford it, especially since it wasn't my stomach that hurt. It was the upper small intestines.
The tests and operations she'd put me through up to this point had us over our heads in serious debt.
I'm talking thousands and thousands of dollars that we owed hospitals, doctors, and other medical personnel, so I didn't go back for more testing.
We simply couldn't afford it, especially since it wasn't my stomach that hurt. It was the upper small intestines.
If she had suggested to test me for celiac disease, I might have been more agreeable to further tests, as the pain and bloating was coming from the heart and the right side of my abdomen, where the upper small intestines join with the stomach -- and not my stomach itself.
But she didn't.
She wanted to test me for an ulcer.
But she didn't.
She wanted to test me for an ulcer.
In that condition, working was impossible. I couldn't go for more than an hour without running for the bathroom, and most of the time, I didn't make it in time.
I lived my life on the toilet or in the shower during those days.
I was dehydrated, exhausted, and in pain all of the time, and even though it was worse before having the gall bladder removed, something was obviously wrong.
Something that wasn't an ulcer.
I lived my life on the toilet or in the shower during those days.
I was dehydrated, exhausted, and in pain all of the time, and even though it was worse before having the gall bladder removed, something was obviously wrong.
Something that wasn't an ulcer.
Using an Elimination Diet to Self-Diagnose Celiac Disease
All of this was happening before non-celiac gluten sensitivity had been discovered through scientific testing.
Even though many within the celiac disease community were acknowledging the existence of gluten sensitivity, Dr. Fassano, a major celiac disease researcher and celiac specialist, was not.
He was sending patients away from the clinic he worked at who didn't test positive for celiac disease by biopsy, telling them that gluten was not their problem.
Even though many within the celiac disease community were acknowledging the existence of gluten sensitivity, Dr. Fassano, a major celiac disease researcher and celiac specialist, was not.
He was sending patients away from the clinic he worked at who didn't test positive for celiac disease by biopsy, telling them that gluten was not their problem.
Back then, there was only celiac disease or nothing. You were either a celiac or you weren't, so if gluten solved your physical issues, you probably had celiac disease.
Today, that isn't true.
Gluten is known to cause all sorts of problems outside the digestive tract, but still, the celiac-disease-only mentally continues.
Gluten is known to cause all sorts of problems outside the digestive tract, but still, the celiac-disease-only mentally continues.
Gluten sensitivity is not a choice.
Non-celiac gluten sensitivity is not a milder form of celiac disease. It is as serious a problem, just as wheat allergies and traditional celiac disease are serious problems.
There was wheat allergies, barley allergies, and rye allergies back then, but I had been tested for those and the tests came back negative.
Due to other food issues that suddenly began in the '80s, I was well aware of how an elimination diet was the only way to diagnose food and chemical sensitivities.
Non-celiac gluten sensitivity is not a milder form of celiac disease. It is as serious a problem, just as wheat allergies and traditional celiac disease are serious problems.
There was wheat allergies, barley allergies, and rye allergies back then, but I had been tested for those and the tests came back negative.
Due to other food issues that suddenly began in the '80s, I was well aware of how an elimination diet was the only way to diagnose food and chemical sensitivities.
Whether those elimination diets were overseen by a doctor or whether you chose to create them yourselves, the process was the same.
Foods you believed you might be sensitive to are eliminated from the diet and the symptoms observed to see if they clear up. If they do, you wait a few weeks, and then try to re-introduce the suspected foods into the diet again to see what happens.
Foods you believed you might be sensitive to are eliminated from the diet and the symptoms observed to see if they clear up. If they do, you wait a few weeks, and then try to re-introduce the suspected foods into the diet again to see what happens.
If the inflammation is caused by something else, and gluten or whatever food you are testing is only aggravating the problem, a gluten challenge won't cause the symptoms to come back.
If they do come back, or if your heart-rate increases shortly after eating the suspected food, then you know beyond a shadow of a doubt that gluten or the suspected food is problematic.
It's not scientific, but it was all we had to go with back then.
If they do come back, or if your heart-rate increases shortly after eating the suspected food, then you know beyond a shadow of a doubt that gluten or the suspected food is problematic.
It's not scientific, but it was all we had to go with back then.
What is the Treatment for Celiac Disease and Non-Celiac Gluten Sensitivity?
The only treatment for celiac disease and non-celiac gluten sensitivity is a gluten-free diet. A gluten-free diet doesn't CURE you of celiac disease; it only keeps the immune system calm, so you don't have to live with horrible symptoms.
Having an official diagnosis doesn't change the treatment.
Treatment is still the same.
The major difference between a diagnosis and a non-diagnosis is that with a diagnosis, some physicians will do further testing to check out your vitamin and mineral deficiencies, but most of them won't. They will also run yearly tests to see how your antibodies to gluten are doing.
Having an official diagnosis doesn't change the treatment.
Treatment is still the same.
The major difference between a diagnosis and a non-diagnosis is that with a diagnosis, some physicians will do further testing to check out your vitamin and mineral deficiencies, but most of them won't. They will also run yearly tests to see how your antibodies to gluten are doing.
Because of that, I went on an elimination diet for gluten by myself.
In my case, I didn't see the point in spending thousands of dollars for a celiac diagnosis once I saw celiac as being a real possibility. Eliminating gluten was either going to get me out of the bathroom and back to living my life or it wasn't.
I didn't need an official diagnosis from someone with a medical license to stay true to a gluten-free diet. That's the excuse that many give for paying the $8,000 out of pocket for a diagnosis: you might cheat later on.
Since I'm a super-sensitive celiac, the symptoms I get from being glutened are more than enough to keep me on the strictly compliant path.
In my case, I didn't see the point in spending thousands of dollars for a celiac diagnosis once I saw celiac as being a real possibility. Eliminating gluten was either going to get me out of the bathroom and back to living my life or it wasn't.
I didn't need an official diagnosis from someone with a medical license to stay true to a gluten-free diet. That's the excuse that many give for paying the $8,000 out of pocket for a diagnosis: you might cheat later on.
Since I'm a super-sensitive celiac, the symptoms I get from being glutened are more than enough to keep me on the strictly compliant path.
I went into the elimination diet with the intention of giving it only a 30-day trial. After which, I planned to review my reaction to removing the gluten, and reintroducing it, but the intestinal problems had improved so dramatically by that time, that I never looked back.
I did not do a gluten challenge.
I did not do a gluten challenge.
But that was then.
Today, my problems have grown more complicated than just intestinal distress. I have additional autoimmune diseases I didn't have back then, such as hyperthyroidism.
I'm also finding it extremely difficult to prevent being glutened. Cross contamination issues are rampant in so-called gluten-free food.
Plus, I tend to get glutened in very odd ways, such as eating at the same table with someone else who is eating gluten foods, especially if I'm sitting near someone who likes to talk with their hands while they eat.
I can also get glutened going to the grocery store.
Plus, I tend to get glutened in very odd ways, such as eating at the same table with someone else who is eating gluten foods, especially if I'm sitting near someone who likes to talk with their hands while they eat.
I can also get glutened going to the grocery store.
The good thing is that since hubby has what we think is dermatitis herpetiformis, our house is totally gluten free, provided I don't make a mistake, and I keep processed foods to a bare minimum.
That isn't always easy to do when you don't feel well, but I've decided to just take it slow and work on cleaning up our diet one recipe at a time.
In some circumstances, celiac disease can be fatal.
This is not talked about very much, but celiac disease is a life-threatening condition.
It is not a fad diagnosis.
When it goes untreated, or if celiacs are continuously exposed to even minor amounts of gluten in their environment, it can snowball into:
It can also be fatal due to the malnutrition involved.
When you have celiac disease, the autoimmune reaction to gluten inflames and damages the lining of the small intestines. Once that happens, the damaged portions of the intestinal tract cannot absorb nutrients properly, so you can become very ill because the malnutrition will affect all areas of your body.
When you have non-celiac gluten-sensitivity, other parts of the body can also be affected:
There are no magic pills or medications that will stop the immune system from mistaking the gluten molecule to be an invader.
Celiac comes with a strong heredity factor, so if someone in your family has been diagnosed with celiac disease there is a good chance that you might eventually develop the same autoimmune reaction, if you don't have it already.
The goal of raising celiac disease awareness is more than just helping the public to understand more about this disease. That's essential to keep us safe during social situations.
However, many doctors have been known to simply tell their newly diagnosed patients to: "Don't eat gluten, see you in a year!"
And that's the only help they get.
Others are referred to nutritionists or dietitians that know less about celiac disease than the patient does. These people often just receive a printout of information that the dietitians found on the internet. Nothing really helpful at all.
So I've decided to expand this site to include those who are newly diagnosed with gluten-related issues instead of just talking to those who are super sensitive to gluten.
But celiac awareness is also to help those who have celiac disease or non-celiac gluten sensitivity get the proper diagnosis or other information that they need to start healing their body and their lives.
So the month of May is set aside to do exactly that.
That isn't always easy to do when you don't feel well, but I've decided to just take it slow and work on cleaning up our diet one recipe at a time.
Related Reading
**If you're interested in reading a detailed account of my celiac story, check out our article on Why I Diagnosed Myself with Celiac Disease.Celiac Disease and Non-Celiac Gluten Sensitivity Symptoms
Celiac disease is one of many gluten-related health problems that you can experience from eating wheat, barley, or rye. It is an autoimmune reaction that occurs whenever you eat foods that contain gluten.
With celiac disease, the abnormal reaction is to the gliadin protein in the food, so switching to organic forms of wheat, barley, and rye won't help. The gliadin and other proteins are still in there.
With celiac disease, the abnormal reaction is to the gliadin protein in the food, so switching to organic forms of wheat, barley, and rye won't help. The gliadin and other proteins are still in there.
There are over 300 documented conditions and symptoms associated with gluten intolerance.
You don't have to experience all of those symptoms and conditions, of course.
Some people will have common, IBS symptoms, such as:
You don't have to experience all of those symptoms and conditions, of course.
Some people will have common, IBS symptoms, such as:
- chronic diarrhea
- bloating
- excessive gas
- and abdominal pain
- anemic
- lose weight for no reason
- and be irritable
- or depressed
- indigestion
- eczema
- skin rashes and sores
- and canker or mouth sores
- yellow teeth
- enamel defects
- headaches
- infertility
- thin bones
- neuropathy
- autoimmune thyroid disease
- joint pain
- fibromyalgia
- leaky gut syndrome
- and exhaustion
The extensive way that gluten intolerance presents itself is why diagnosis is difficult.
Each person will experience different symptoms.
However, a lot of people have absolutely no symptoms when they eat gluten at all!
For that reason, it's estimated that 80 to 95 percent of those with gluten-related health problems have either not been diagnosed or have been misdiagnosed with other conditions.
In fact, the average person will go from doctor to doctor for at least 10 years before receiving a celiac diagnosis.
For those with non-celiac gluten senstivity, it may be even longer because there is no test for gluten sensitivity other than to check for the presence of leaky gut syndrome.
It is currently thought that about 1 percent of the world's population has celiac disease, and up to 6 percent of those in the U.S. probably have non-celiac gluten sensitivity or allergy.
According to the Gluten Intolerance Group, a gluten-free certification agency and celiac organization, 80 percent of the people who have celiac disease do not know that they have it. Most people are asymptomatic.
This is the real reason why celiac awareness is so important.
Each person will experience different symptoms.
However, a lot of people have absolutely no symptoms when they eat gluten at all!
For that reason, it's estimated that 80 to 95 percent of those with gluten-related health problems have either not been diagnosed or have been misdiagnosed with other conditions.
In fact, the average person will go from doctor to doctor for at least 10 years before receiving a celiac diagnosis.
For those with non-celiac gluten senstivity, it may be even longer because there is no test for gluten sensitivity other than to check for the presence of leaky gut syndrome.
It is currently thought that about 1 percent of the world's population has celiac disease, and up to 6 percent of those in the U.S. probably have non-celiac gluten sensitivity or allergy.
According to the Gluten Intolerance Group, a gluten-free certification agency and celiac organization, 80 percent of the people who have celiac disease do not know that they have it. Most people are asymptomatic.
This is the real reason why celiac awareness is so important.
Celiac Disease is a Life-Threatening Condition
In some circumstances, celiac disease can be fatal.
This is not talked about very much, but celiac disease is a life-threatening condition.
It is not a fad diagnosis.
When it goes untreated, or if celiacs are continuously exposed to even minor amounts of gluten in their environment, it can snowball into:
- additional autoimmune diseases
- food sensitivities and intolerance
- additional leaky gut problems, like allergies
- osteoporosis
- thyroid disease
- and even un-treatable cancer
It can also be fatal due to the malnutrition involved.
Effects of Celiac Disease
When you have celiac disease, the autoimmune reaction to gluten inflames and damages the lining of the small intestines. Once that happens, the damaged portions of the intestinal tract cannot absorb nutrients properly, so you can become very ill because the malnutrition will affect all areas of your body.
When you have non-celiac gluten-sensitivity, other parts of the body can also be affected:
- brain
- nervous system
- skin
- pancreas
- liver
- kidneys
- thyroid
Celiac Disease Treatment
The only treatment currently available for those with celiac disease or non-celiac gluten sensitivity is a gluten-free diet.There are no magic pills or medications that will stop the immune system from mistaking the gluten molecule to be an invader.
Celiac comes with a strong heredity factor, so if someone in your family has been diagnosed with celiac disease there is a good chance that you might eventually develop the same autoimmune reaction, if you don't have it already.
Goal of Raising Celiac Awareness
The goal of raising celiac disease awareness is more than just helping the public to understand more about this disease. That's essential to keep us safe during social situations.
However, many doctors have been known to simply tell their newly diagnosed patients to: "Don't eat gluten, see you in a year!"
And that's the only help they get.
Others are referred to nutritionists or dietitians that know less about celiac disease than the patient does. These people often just receive a printout of information that the dietitians found on the internet. Nothing really helpful at all.
So I've decided to expand this site to include those who are newly diagnosed with gluten-related issues instead of just talking to those who are super sensitive to gluten.
But celiac awareness is also to help those who have celiac disease or non-celiac gluten sensitivity get the proper diagnosis or other information that they need to start healing their body and their lives.
So the month of May is set aside to do exactly that.
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