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| How long after going gluten free will you feel better? |
There is a huge misconception among newbies to the gluten-free lifestyle, and this false expectation has caused some people to wonder if they fit into the category of being a super-sensitive celiac.
In general, doctors tend to be fairly ignorant of celiac disease, so they often tell patients that fixing their symptoms is easy because it just takes a "simple diet correction,” thanks to all of the gluten-free products available today.
For this reason, many celiacs expect a gluten-free diet to miraculously make all of their uncomfortable symptoms go away within a couple of days.
But how realistic is that?
I hate to have to break it to you, but it was several years before I started to feel normal!
Celiac disease, non-celiac gluten sensitivity, dermatitis herpetiformis, and all of the other conditions heavily associated with gluten intolerance pack a hefty emotional wallop.
While I'm not convinced that other food sensitivities are as common among celiacs as the celiac community believes, and have found gluten contamination to be responsible for ALL of my own lingering symptoms, your emotional state also plays a huge role in symptom manifestation.
And so does your basic instinct for survival.
So what can you realistically expect from going gluten free?
How long after going gluten free will those nasty symptoms stop bugging you?
And how long will it take to actually feel better?
How Quickly Will You Feel Better After Going Gluten Free?
Let's get the physical stuff out of the way first. From what I've seen in various gluten-free forums:
There's no correlation between symptoms and intestinal damage, so expecting a gluten-free diet to automatically shut down the immune system and give you your old life back isn't realistic.
That is not going to happen.
A study conducted by the Mayo Clinic and published in 2010 found that four out of five study participants had their symptoms improve or disappear after going gluten free.
But that isn't the whole story.
After two years, only one-third of those study participants had physically recovered and regained healthy villi.
This means that after two years, despite feeling better, two-thirds didn't have a healthy intestinal lining yet. They still had some degree of malabsorption and malnutrition going on.
And after five years of being gluten free, about one-third of those looked at didn't heal without additional intervention.
Keep in mind that if these statistics hold up across the entire gluten-free community, then some of the people who experience persistent damage continue to feel ill due to non-compliance to the diet.
I see this in gluten-free forums all of the time.
People are always asking if being 98- to 99-percent gluten free is good enough. They can't understand why it isn't okay to cheat once in a while on a gluten-free diet.
If you take those who cheat on their gluten-free diet out of the equation, a large group of celiacs are being contaminated with gluten from their environment, as well as their diet.
This is what the latest observational study discovered.
The average celiac is getting 200 to 300 milligrams of gluten a day! With some getting as much as 600!
They don't realize they are still getting glutened by what they eat and how they live their lives. They believe they are following a strict gluten-free diet!
The problem?
Many celiac experts are scientists, and scientists only believe in what can be proven through scientific research, so discovering this has taken a very long time.
The research used to defend the gluten-free labeling law is often used to justify what celiac organizations want you to believe, which is turn is based on funding.
But most people have not actually read the study themselves.
Instead, they take a celiac expert at their word, even though much of what's passed on is theory and personal opinion.
For example, Dr. Fasano once said in an interview that he used to turn away hundreds of people who came to him with celiac symptoms but didn't test positive for celiac. He told these people that gluten was not their problem and to keep on eating it.
Since gluten sensitivity had not yet been proven to exist, he didn't believe in it.
This is one of the reasons why it is not wise to place celiac experts on a pedestal. They speak from their current understandings, and reject most personal experiences.
Therefore, you have to understand the context they are talking in, as well as their personal biases, perceptions, understandings, and business alliances in order to properly interpret what they believe.
Dr. Fasano came out in support of Big Business to get the Gluten-Free Labeling Law passed, which has caused a lot of misconceptions within the gluten-free community regarding what he personally believes.
His strong stance of firmly supporting the 20 ppm definition for gluten-free labeling doesn't mean he doesn't accept the existence of super sensitivity.
And this is why:
1) The FDA's own report on sensitivity levels clearly points out that the only way to protect ALL celiacs is a diet that contains less than 1 ppm of gluten;
AND
2) Dr. Fasano's own scientific research study done on potential refractory celiac disease patients proved that super sensitivity exists.
He uses the diet designed in that study to treat his own super sensitive celiac patients, while continuing to support the idea that up to 20 ppm of gluten is safe for most celiacs.
To understand Dr. Fasano's contradiction, you have to look at who he is talking to at the time. Audience matters, the same as it does for blogs, celiac organizations, and other celiac experts.
Most of the online information you'll run into is created for those who can tolerate up to 20 ppm of gluten without symptoms or intestinal damage, which is why this blog exists.
Most online info isn't designed for the one-third who will not heal on a standard gluten-free diet.
That is where this blog differs from other gluten free and celiac blogs. We cover super sensitivity problems and topics, as well as give out basic advice for the beginner.
Being symptom-free doesn't guarantee that you are out of physical danger.
Your task of avoiding uncomfortable symptoms are being met, but many things might be going on beneath the skin that could cause potential problems down the line.
You're not really safe, when symptom free, but for most people, being free of symptoms is all they care about.
With that in mind, here is something about stress and anxiety that you might not know.
What you might not know is that symptoms are not only due to what's going on with the body physically. In autoimmune disease, the body is consistently mobilized and ready to attack the enemy, which in our case happens to be gluten, even though gluten is not really the enemy.
Since the immune system is involved, it takes only a fraction of a single breadcrumb to set off an immune system response.
Allergy is a bit different.
Allergic reactions occur when allergens (as a group) build up to a point where the body can't deal with them appropriately. Plus, the symptoms are due to the release of histamines, which also can build up over time.
Symptoms are accumulative, so pinning them down to a particular substance can be a nightmare because when allergens are low, you might not react.
And when allergens are high, you might react to something you normally wouldn't react to.
Autoimmune disease doesn't work that way.
And neither do your beliefs and emotions.
Symptoms can be a direct result of your mental and emotional condition, which tends to be pretty stressed out where gluten intolerance is concerned.
Getting diagnosed was a hassle, and most likely took a few years.
Learning how to eat gluten free was stressful, due to all of the misinformation put out online and the radical change in food choice and lifestyle calming down the immune system requires.
Anything you perceive to be a threat to your well-being mobilizes internal forces in a “fight or flight” response. If your hormones get involved, such as coritsol, they provide the extra energy you need to take care of the problem quickly.
But if you are not really in physical danger, and don't need to physically fight an opponent or run from some form of danger, all of that excess energy builds up.
Since energy cannot be destroyed, it has to be used, stored, or released in some way.
Biologically, this is known as adaption.
If the body doesn't store that energy as body fat, it can find unusual things to do with it, which manifest as odd symptoms, aches and pains, anxiety, or shaking. The excess energy can also lead to undesirable medical conditions.
Adaption, no matter how the body chooses to do it, always brings symptoms.
Once the body decides to use a collective group of symptoms to adapt to stress, the medical profession generally has a title they can give you for that adaption. This is called a diagnosis, which occurs because if your mental and emotional state chronically produces excess energy, it will literally damage your physical body.
The point here is that symptoms are not the bad guy, anymore than gluten is.
Symptoms are a result of something going haywire.
They manifest a lack of balance in your mental, emotional, and/or physical condition. They tell you that something is faulty in the way that you think, feel, act, or eat.
Does this mean celiac disease does not exist?
No. Of course not.
It means you can't expect a gluten-free diet to get rid of all of your symptoms overnight because all of these symptoms you are experiencing are not caused by the celiac disease.
Some symptoms are a warning that gluten molecures are around. Some symptoms are caused by the stress you're under and how you think or feel about what's going on.
An attitude and emotional adjustment is as necessary to heal from celiac disease as avoiding gluten is.
As a group, super sensitives have a strong will to live.
Their instinct for survival is stronger than average.
It's so strong, that it shoots off symptoms before you reach the level of gluten contamination that will damage your body.
Symptoms are how your mind talks to you.
In the FDA evaluation on sensitivity to gluten that I linked to above, the researchers found that the most sensitive celiac will begin having symptoms at 0.15 ppm of gluten, while physical damage did not occur until gluten contamination was higher than that.
However, when symptoms manifest, there's no way to know if you have gone over your personal threshold, so ignoring symptoms is never a wise move. It's always best to keep your gluten contamination load down below where symptoms manifest.
For a super sensitive celiac, symptoms won't stop until you take your diet and environmental contaminates below the point where the unconscious mind becomes concerned, which happens to be quite low compared to the gluten load that the average celiac can handle.
Many people with super sensitivity have to go as close to biological zero as they can.
Gluten hides in places that the average celiac doesn't believe because that's what the people they look up to have taught them.
Since super sensitives belong to a specialized group of n=1's, and little information is available online, it's helpful to share your personal experiences with others, so they can experiment with some of those ideas for themselves.
This seems to be the only help that super sensitives have: each other.
If you've only been gluten free for a few days, weeks, or months, there is no way to know how sensitive you are to gluten. Healing takes time, so you need to be patient and let gluten deprivation do its thing.
Only 1 in 3 of us who are diagnosed with celiac will heal within 2 years. And 2 in 3 will heal within 5.
Switching to a whole foods diet, or the Fasano Diet, can be beneficial and quicken the healing process, but most celiacs don't have the desire to eliminate more gluten than they need to get rid of their symptoms.
And that's okay.
If you can tolerate 20 ppm of gluten without damaging yourself, there's no reason to eat less than that.
If you can't tolerate up to 20 ppm and remain symptom free, even after a year or two of eating a standard gluten-free diet, then you need to take a serious look at your:
While that might not be fair, and will demand that you be more aware than others and make sacrifices they are not called on to make, this is simply the way it is.
We live in a gluten-saturated society, and the only way for a super-sensitive celiac to reduce their symptoms and enjoy those temporary symptom-free periods of time, is to ignore what the bloggers and celiac experts tell you and get rid of as much gluten contamination as you possibly can.
Once you've done all you can do, you still won't be 100-percent symptom free 100-percent of the time.
That's impossible.
Life is filled with never-ending challenges and puzzles. Accept that fact, and do the best you can. That's all that Life asks of us.
- At least half of those who go on a gluten-free diet will begin to feel better right away, maybe within a few days.
- A smaller group will see drastic improvements within a month or two.
- Some individuals will continue feeling bad for a year or more before they begin to feel better.
- Others will regain a level of normalcy only after a few years, which doesn't come close to how they felt before.
- And a few won't ever feel better again.
There's no correlation between symptoms and intestinal damage, so expecting a gluten-free diet to automatically shut down the immune system and give you your old life back isn't realistic.
That is not going to happen.
What Does the Research Say?
A study conducted by the Mayo Clinic and published in 2010 found that four out of five study participants had their symptoms improve or disappear after going gluten free.
But that isn't the whole story.
After two years, only one-third of those study participants had physically recovered and regained healthy villi.
This means that after two years, despite feeling better, two-thirds didn't have a healthy intestinal lining yet. They still had some degree of malabsorption and malnutrition going on.
And after five years of being gluten free, about one-third of those looked at didn't heal without additional intervention.
Keep in mind that if these statistics hold up across the entire gluten-free community, then some of the people who experience persistent damage continue to feel ill due to non-compliance to the diet.
I see this in gluten-free forums all of the time.
People are always asking if being 98- to 99-percent gluten free is good enough. They can't understand why it isn't okay to cheat once in a while on a gluten-free diet.
Why Some People Don't Feel Better
If you take those who cheat on their gluten-free diet out of the equation, a large group of celiacs are being contaminated with gluten from their environment, as well as their diet.
This is what the latest observational study discovered.
The average celiac is getting 200 to 300 milligrams of gluten a day! With some getting as much as 600!
They don't realize they are still getting glutened by what they eat and how they live their lives. They believe they are following a strict gluten-free diet!
The problem?
Many celiac experts are scientists, and scientists only believe in what can be proven through scientific research, so discovering this has taken a very long time.
The research used to defend the gluten-free labeling law is often used to justify what celiac organizations want you to believe, which is turn is based on funding.
But most people have not actually read the study themselves.
Instead, they take a celiac expert at their word, even though much of what's passed on is theory and personal opinion.
For example, Dr. Fasano once said in an interview that he used to turn away hundreds of people who came to him with celiac symptoms but didn't test positive for celiac. He told these people that gluten was not their problem and to keep on eating it.
Since gluten sensitivity had not yet been proven to exist, he didn't believe in it.
This is one of the reasons why it is not wise to place celiac experts on a pedestal. They speak from their current understandings, and reject most personal experiences.
Therefore, you have to understand the context they are talking in, as well as their personal biases, perceptions, understandings, and business alliances in order to properly interpret what they believe.
Dr. Fasano came out in support of Big Business to get the Gluten-Free Labeling Law passed, which has caused a lot of misconceptions within the gluten-free community regarding what he personally believes.
His strong stance of firmly supporting the 20 ppm definition for gluten-free labeling doesn't mean he doesn't accept the existence of super sensitivity.
And this is why:
1) The FDA's own report on sensitivity levels clearly points out that the only way to protect ALL celiacs is a diet that contains less than 1 ppm of gluten;
AND
2) Dr. Fasano's own scientific research study done on potential refractory celiac disease patients proved that super sensitivity exists.
He uses the diet designed in that study to treat his own super sensitive celiac patients, while continuing to support the idea that up to 20 ppm of gluten is safe for most celiacs.
To understand Dr. Fasano's contradiction, you have to look at who he is talking to at the time. Audience matters, the same as it does for blogs, celiac organizations, and other celiac experts.
Most of the online information you'll run into is created for those who can tolerate up to 20 ppm of gluten without symptoms or intestinal damage, which is why this blog exists.
Most online info isn't designed for the one-third who will not heal on a standard gluten-free diet.
That is where this blog differs from other gluten free and celiac blogs. We cover super sensitivity problems and topics, as well as give out basic advice for the beginner.
Why “Feeling Better” Doesn't Mean Safety
 |
| While feeling better or getting symptom free may be the goal, it doesn't mean you are safe. |
Being symptom-free doesn't guarantee that you are out of physical danger.
Your task of avoiding uncomfortable symptoms are being met, but many things might be going on beneath the skin that could cause potential problems down the line.
You're not really safe, when symptom free, but for most people, being free of symptoms is all they care about.
With that in mind, here is something about stress and anxiety that you might not know.
All of Your Symptoms Might Not be from Celiac Disease
What you might not know is that symptoms are not only due to what's going on with the body physically. In autoimmune disease, the body is consistently mobilized and ready to attack the enemy, which in our case happens to be gluten, even though gluten is not really the enemy.
Since the immune system is involved, it takes only a fraction of a single breadcrumb to set off an immune system response.
Allergy is a bit different.
Allergic reactions occur when allergens (as a group) build up to a point where the body can't deal with them appropriately. Plus, the symptoms are due to the release of histamines, which also can build up over time.
Symptoms are accumulative, so pinning them down to a particular substance can be a nightmare because when allergens are low, you might not react.
And when allergens are high, you might react to something you normally wouldn't react to.
Autoimmune disease doesn't work that way.
And neither do your beliefs and emotions.
Symptoms can be a direct result of your mental and emotional condition, which tends to be pretty stressed out where gluten intolerance is concerned.
Getting diagnosed was a hassle, and most likely took a few years.
Learning how to eat gluten free was stressful, due to all of the misinformation put out online and the radical change in food choice and lifestyle calming down the immune system requires.
Anything you perceive to be a threat to your well-being mobilizes internal forces in a “fight or flight” response. If your hormones get involved, such as coritsol, they provide the extra energy you need to take care of the problem quickly.
But if you are not really in physical danger, and don't need to physically fight an opponent or run from some form of danger, all of that excess energy builds up.
Since energy cannot be destroyed, it has to be used, stored, or released in some way.
Biologically, this is known as adaption.
If the body doesn't store that energy as body fat, it can find unusual things to do with it, which manifest as odd symptoms, aches and pains, anxiety, or shaking. The excess energy can also lead to undesirable medical conditions.
Adaption, no matter how the body chooses to do it, always brings symptoms.
Once the body decides to use a collective group of symptoms to adapt to stress, the medical profession generally has a title they can give you for that adaption. This is called a diagnosis, which occurs because if your mental and emotional state chronically produces excess energy, it will literally damage your physical body.
The point here is that symptoms are not the bad guy, anymore than gluten is.
Symptoms are a result of something going haywire.
They manifest a lack of balance in your mental, emotional, and/or physical condition. They tell you that something is faulty in the way that you think, feel, act, or eat.
Does this mean celiac disease does not exist?
No. Of course not.
It means you can't expect a gluten-free diet to get rid of all of your symptoms overnight because all of these symptoms you are experiencing are not caused by the celiac disease.
Some symptoms are a warning that gluten molecures are around. Some symptoms are caused by the stress you're under and how you think or feel about what's going on.
An attitude and emotional adjustment is as necessary to heal from celiac disease as avoiding gluten is.
What About Super Sensitives? How Soon Will They Feel Better?
As a group, super sensitives have a strong will to live.
Their instinct for survival is stronger than average.
It's so strong, that it shoots off symptoms before you reach the level of gluten contamination that will damage your body.
Symptoms are how your mind talks to you.
In the FDA evaluation on sensitivity to gluten that I linked to above, the researchers found that the most sensitive celiac will begin having symptoms at 0.15 ppm of gluten, while physical damage did not occur until gluten contamination was higher than that.
However, when symptoms manifest, there's no way to know if you have gone over your personal threshold, so ignoring symptoms is never a wise move. It's always best to keep your gluten contamination load down below where symptoms manifest.
For a super sensitive celiac, symptoms won't stop until you take your diet and environmental contaminates below the point where the unconscious mind becomes concerned, which happens to be quite low compared to the gluten load that the average celiac can handle.
Many people with super sensitivity have to go as close to biological zero as they can.
Gluten hides in places that the average celiac doesn't believe because that's what the people they look up to have taught them.
Since super sensitives belong to a specialized group of n=1's, and little information is available online, it's helpful to share your personal experiences with others, so they can experiment with some of those ideas for themselves.
This seems to be the only help that super sensitives have: each other.
The Bottom Line
If you've only been gluten free for a few days, weeks, or months, there is no way to know how sensitive you are to gluten. Healing takes time, so you need to be patient and let gluten deprivation do its thing.
Only 1 in 3 of us who are diagnosed with celiac will heal within 2 years. And 2 in 3 will heal within 5.
Switching to a whole foods diet, or the Fasano Diet, can be beneficial and quicken the healing process, but most celiacs don't have the desire to eliminate more gluten than they need to get rid of their symptoms.
And that's okay.
If you can tolerate 20 ppm of gluten without damaging yourself, there's no reason to eat less than that.
If you can't tolerate up to 20 ppm and remain symptom free, even after a year or two of eating a standard gluten-free diet, then you need to take a serious look at your:
- living situation
- eating habits
- cooking habits
- social activities
- work environment
While that might not be fair, and will demand that you be more aware than others and make sacrifices they are not called on to make, this is simply the way it is.
We live in a gluten-saturated society, and the only way for a super-sensitive celiac to reduce their symptoms and enjoy those temporary symptom-free periods of time, is to ignore what the bloggers and celiac experts tell you and get rid of as much gluten contamination as you possibly can.
Once you've done all you can do, you still won't be 100-percent symptom free 100-percent of the time.
That's impossible.
Life is filled with never-ending challenges and puzzles. Accept that fact, and do the best you can. That's all that Life asks of us.
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