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| Tracking down hidden sources of gluten isn't easy. Here are 7 lessons I learned from going gluten free. |
When you've been on a gluten-free diet for a while, you expect to feel better right away, especially since many so-called celiac experts claim you can recover in 6 to 12 months.
That might be true if you're super young, without a lot of physical damage, but according to the Mayo Clinic, if you've gone decades without a celiac diagnosis, the amount of physical destruction you have actually takes an average of 4 years to heal.
And that's if you can go for lengthy periods of time without getting glutened because it only takes one single event of cross-contamination or accidental gluten ingestion per month to keep you feeling ill.
The purpose of giving up the wheat, barley, and rye is to heal the gut and protect the villi of your small intestines from getting attacked again.
If you can do that, you'll begin to absorb the nutrients you weren't absorbing before your diagnosis. Better absorption means better health, energy, and well-being.
However, there is a large portion of the gluten-free community that doesn't heal after going on a standard gluten-free diet.
In fact, the latest study conducted by the Mayo Clinic discovered that only 1 in 3 of their biopsy-diagnosed celiac disease patients had recovered after 2 years, and only 2 in 3 had fully recovered after 5.
That's not a pleasant picture.
If the Mayo Clinic study data holds up across the entire celiac community, it means 1 in 3 people who have been officially diagnosed with celiac disease, properly educated about where gluten hides, and given adequate follow-up care -- do not heal -- even after 5 years of treatment with a gluten-free diet!
In addition, Mayo Clinic researchers also learned that those with the most extensive villi damage were those who found it the most difficult to recover.
And the Mayo Clinic isn't the only one coming up with these shocking statistics.
The American Journal of Clinical Nutrition published an article last February, 2018, where researchers found that the average gluten consumption of those on a gluten-free diet is well over 200 mg a day!
That's milligrams, and not parts per million!
The meta-data study discovered that those sticking to a gluten-free diet, without cheating, accidentally ingest from 100 to 400 mg a day. When you consider that prior research performed by Dr. Fasano observed that 50 mg is the upper limit for safety, it's easy to see why it takes so long to heal.
Since you may just be starting out on your super-sensitivity journey and feel lost about where to begin, I'm going to share with you the 7 lessons that I have learned over the years from tracking down the hidden gluten in my diet.
Hopefully, what I learned will help you get a tighter reign on your gluten consumption, too.
Since the facts shared in the Mayo Clinic study cast such a dark shadow over the whole point of ditching gluten, if you're still suffering with symptoms, you might be tempted to begin searching for answers on celiac blogs and gluten-free forums.
That's what I did.
However, I was shocked by the attitude of some of the long-term forum members I ran into, as well as the information they were actually giving out to newbies or those who were still ill.
Many of these knowledgeable people didn't have the capacity to see beyond their nose. They could only accept their own personal experience as real, plus the beliefs and advice of those they considered to be authoritative.
Those with a different experience were labeled obsessive or fearful of gluten.
Most blogs, forums, and egroups only pass out what I call generic information. They regurgitate what celiac organizations, popular research scientists, and celiac experts have to say about the average celiac.
A few bloggers will share their personal experiences, but those who are super-sensitive tend to stay pretty quiet about it. You're not going to find a lot of helpful information on a typical blog or forum.
They aren't written for super-sensitive celiacs.
They are written for the majority.
It wasn't very long before I realized that a lot of these well-researched celiacs have turned gluten-free living into a religion. Not only do they quote and repeat the party line, what celiac organizations say, but they also consider certain individuals within the celiac community to be infallible.
The words of these researchers, physicians, and celiac experts are put forth in forum posts, as well as the comments on blogs, as being the final word on a given gluten-free topic. Personal opinion of those in the spotlight is presented as fact.
Oddly enough, a few years ago, many of these same authoritative individuals were publicly stating that non-celiac gluten sensitivity did not exist. There was only celiac disease and dermatitis herpetiformis.
If you didn't test positive for one of these two forms of celiac disease, you were told that gluten wasn't your problem.
Today, we know that isn't true.
Non-celiac gluten sensitivity does exist.
For a long time, there's been this weird notion within the various groups I've belonged to that only things documented by scientific research is reliable.
This is why researchers, physicians, and celiac experts don't believe you can react to the steam from a boiling pot of semolina pasta. Nor that you can accidentally gluten yourself by touching a doorknob.
If you tell them that gluten in your favorite shampoo is the culprit for that rash down your back or belly ache, they'll start yelling at you to keep your mouth shut when you shower.
For the most part, celiacs who thrive on doing research can't wrap their minds around gluten reactions that haven't been documented by science -- yet.
In their mind, your reaction to gluten, along with the personal experiences of those who are super-sensitive to gluten residues, do not exist.
Recent research into the biological reactions that people have to different foods is now documenting the fact that everyone doesn't react the same.
This is something a lot of us already knew, but science is just catching up to the idea that what makes my blood glucose unstable or elevated, and what corrects those issues, will be different from what makes your blood glucose level unstable or elevated, and what corrects those issues for you.
The same principle can be applied to gluten.
Each person has a different tolerance level, which means that the amount of residual gluten that triggers an immune system response violent enough to cause symptoms will be different in each individual.
In fact, the document put out by the FDA that was used to craft the gluten-free labeling law said that super sensitives tend to react to lower levels of gluten than what actually causes damage for them.
Symptoms of gluten exposure are like a protective mechanism. The body warns you ahead of time.
The immune system is set up in such a way that it can comfortably handle and get rid of a certain number of invaders without becoming overwhelmed enough to make you feel sick.
However, in our gluten-saturated society, being overwhelmed by residual gluten is becoming more common, especially with the new FDA labeling laws siding with the food manufacturer rather than those who suffer from gluten intolerance.
The reality is that no matter what bloggers and forum moderators and participants have to say, your personal experience matters. You need to listen to your body when it talks to you.
In fact, in most cases, experiential evidence is far more accurate than science because scientific studies can only look at a finite group of individuals and make conclusions on what they observe in those individuals only.
What I've come to realize is that the conclusions about study participants may or may not apply to you. Placing the conclusions put forth by the researchers onto a pedestal of authority is insane.
What was true yesterday, scientifically, won't necessarily be true tomorrow, once further evidence comes forth, so the best that a scientist can do is guess as to what the data means.
With so many individuals on gluten-free diets still suffering various symptoms and abnormalities, despite strict adherence to a gluten-free diet, it's not really helpful for long-term celiac community members to discount those who come forward to courageously share their gluten stories.
While it's true that despite having celiac disease or non-celiac gluten sensitivity everything that makes you feel bad is not due to gluten, my own experience in tracking down hidden sources I've previously missed hasn't backed up many of the ideas that state:
You might . . .
You might . . .
See the uncertainly there?
I was amazed at just how quickly people in celiac forums or at gluten-free blogs are to brush off as impossible what those with celiac disease and non-celiac gluten sensitivity are really going through.
In fact, "You can't be reacting to gluten," is said just as much as, "You might . . ."
While searching out the cause of continual stomach upsets I was experiencing a few years ago, one of the most important lessons I learned was this:
If you believe people who think-they-know what's going on with you and base your decision to seek, or not seek, where gluten might still be hiding in your personal lifestyle just because they do not believe your symptoms are caused by gluten contamination, it will keep you sick.
Period.
You need to follow what your body is telling you and not those who believe they know what's true for you.
For years -- and I mean years -- I eliminated a ton of foods from my diet trying to find what was blocking the body's ability to heal. After 4 or 5 years of listening to the celiac community, I said forget it.
It's NOT food sensitivities.
It's the gluten. It has ALWAYS been the gluten!
Scientific research says that gluten contamination is the number one reason why people don't heal on a standard gluten-free diet!
That's true in other countries, such as Italy, as much as it is true here in the U.S., including studies done by Dr. Fasano, one of the authoritative researchers celiacs like to hold up as being infallible.
Every study I've read so far that has looked into the issue of people not responding to gluten-free diets has found exactly the same thing. The data numbers differ a little, but overwhelmingly, the number of celiacs who have:
That's scientific fact!
Reading these studies for myself were very eye-opening for me.
For example, when Dr. Fasano and colleagues looked at 1,288 patients referred to the University of Maryland Center for Celiac Research between the years of 2005 and 2011, only 21 patients qualified for a potential refractory celiac disease diagnosis.
Further, of the 17 patients that were placed on a modified gluten-free diet that eliminated all potential gluten residues in their foods, and completed the study, 14 responded favorably. In fact 11 of those 17 individuals were even able to return to a typical gluten-free diet after their recovery.
The take-away is this:
While food intolerance, colitis, Crohn's disease, IBS, and RCD might be the culprit for your continued symptoms after going gluten free for several months and not responding, in the majority of cases, they are not.
Most of the time, when symptoms continue on a gluten-free diet, you are being glutened in some way.
In the research study above, it was contaminated grains and processed foods that allow up to 20 ppm of gluten that were preventing most of the study participants from healing. And this coincides with what the most recent metadata analysis found, as well.
Therefore, it won't always be something obvious. It could be something as minor as the wheat starch in the brand of Xanthan gum you're using.
Decades.
That's how much time I spent chasing after potential reasons for being sick and in pain all the time.
In the beginning, before the Internet existed, I spent hours in the public library, checking out and reading books on nutrition, health, diet, allergies, multiple chemical sensitivity, and food intolerance.
Over the years, I've tried:
I have no allergies to food or pollen.
It took me awhile to wrap my brain around the idea that hidden gluten is the number one reason why someone is still reacting because research-loving celiacs like to point out that when a celiac doesn't feel well they automatically start blaming gluten.
While that tendency is easy to see within the gluten-free community, why is that a problem?
Hidden gluten will keep your intestines inflamed and your villi damaged until you discover where it's hiding and eliminate the source from your life.
Maybe you'll chase after several red herrings, such as allergies or another diagnosis.
If you're lucky, eventually you'll come to realize that the people who are telling you it can't be gluten don't know what they're talking about because they are not sick. A standard gluten-free diet works for them, even though it doesn't work for you.
When secondhand forest fire smoke blew into Utah from California a couple of years ago, my typical gluten symptoms become more violent and more frequent.
At the time, I just figured that my body was simply trying to detox from the smog.
I spent days hiding out in our basement apartment with the air filter running 24-7 and blaming the digestive problems on air quality. However, once the air cleared, those gluten-like reactions didn't go away.
That's when my inner doctor came forth and started throwing out a lot of evil thoughts of what it might be:
What I learned from that research was that diagnosing celiac disease, microsoptic colitis, and Crohn's disease seems to depend on which part of the intestinal tract is damaged.
However, that information didn't solve my current dilemma.
Oddly enough, I was reacting to the intensity of the problem by running around doing the very thing that people on blogs and at celiac forums suggest:
I was looking for something that wasn't gluten-related.
However, that only prolonged the agony.
When I finally came to my senses and started paying closer attention to what we were eating and how my body was reacting to those foods, a familiar pattern emerged.
I've always had problems digesting fats, so I wasn't eating very much of it. Intestinal inflammation makes it difficult for the body to absorb fats, but at the time, I hadn't connected the dots yet.
With so many people telling me to look in a different direction than gluten for the answers, I was focusing on the wrong things.
The digestive issues were worse in the morning, so I finally reached a point where I was ready to concede that perhaps the problem was diet related. As a result of that determination, I paid closer attention to breakfast.
What I learned about myself was that one tablespoon of bacon fat used to scramble our eggs left me feeling okay for the day. I had no cramps, no vertigo, no brain fog.
Half that amount in real butter, however, made me very sick. I would experience cramps within half-an-hour and be running for the bathroom all day.
At first, I thought it might be dairy. Except, I wasn't having that type of reaction to the little bit of cheese I ate. Nor the ice cream that hubby and I enjoy several nights a week.
Just the butter.
That was confusing. Almost every single celiac-safe foods list I've ever seen tells you that all dairy products are always gluten free, so how could I be reacting to butter?
Yet, I was.
At that point, I opened up the freezer and stood there looking in at the six pounds of butter I had stored there. The butter we'd been using wasn't the the Amish Country roll butter we'd been purchasing before we moved into the basement apartment.
It was a brand of butter that hubby bought when he was working up north a few months prior to getting sick.
After doing a bit of research on dairy products and gluten, I walked away completely shocked. Not only do you need to question what's being shared on blogs, in comments, and on forums regarding what might be keeping you sick, but even the gluten-free safe lists are not accurate.
After hunting down a Macey's grocery store and switching back to the butter we were using before I started reacting, the cramps, digestive issues, and even the trouble with dietary fats slowly corrected themselves and disappeared over the course of a few weeks.
In fact, for the first time since going gluten free, my stomach didn't hurt!
I still felt exhausted and sometimes had sleeping problems, but we had been eating that brand of butter for a long time. I'm certain that it did a lot of accumulative damage.
How could it be otherwise?
At $2 a pound, hubby brought home several pounds of butter almost every time he went up north, even though we didn't need more, so we had been eating that brand of butter for several months.
In a knee-jerk reaction to all of this, we also stopped bringing home store-brand hard cheeses and switched back to Daisy sour cream, just to be safe.
There was no cottage cheese in our area at the time that didn't contain Xanthan gum, so we decided to stick with the Meadow Gold that our local Costco sold since I only used it very infrequently.
I wanted to give the intestines plenty of space to heal up.
The biggest lesson for me in all of this is that most people who spend their time blogging, commenting on blogs, moderating forums, or hanging out there mean well, but most of them do not know what they are talking about when it comes to gluten sensitivity.
They are simply parroting statements that people they respect have shared, without considering the fact that many of those so-called authoritative statements are simply opinion based on hypothesis, theories, and what's known-to-date, rather than facts.
Very little is known about celiac disease, and even less about non-celiac gluten sensitivity, so there is no way to know whether your exaggerated reactions are coming from gluten or something else.
It's irresponsible to say that they are not gluten.
Believing that people cannot react:
Anything that can get into your lungs or on your hands can wind up in your stomach.
The bottom line is that you don't have to sit around and put up with a daily stomach ache or migraine just because vocal gluten-free community participants believe you're nuts.
You also don't have to put yourself in harm's way by going out to eat or eating something that someone else made -- if you don't want to.
You are NOT living in fear just because someone else believes that you are.
The statements you read at blogs and forums are more about the person speaking, than they are about you.
You are FREE to ignore what other people think.
You are FREE to hunt down the various ways in which gluten is still sneaking into your life and nip them in the bud.
And most importantly, you are FREE to finally become one of the 2 in 3 celiac individuals that actually heal and fully recover from the physical damage caused by eating gluten.
And that's if you can go for lengthy periods of time without getting glutened because it only takes one single event of cross-contamination or accidental gluten ingestion per month to keep you feeling ill.
If you can do that, you'll begin to absorb the nutrients you weren't absorbing before your diagnosis. Better absorption means better health, energy, and well-being.
However, there is a large portion of the gluten-free community that doesn't heal after going on a standard gluten-free diet.
In fact, the latest study conducted by the Mayo Clinic discovered that only 1 in 3 of their biopsy-diagnosed celiac disease patients had recovered after 2 years, and only 2 in 3 had fully recovered after 5.
That's not a pleasant picture.
If the Mayo Clinic study data holds up across the entire celiac community, it means 1 in 3 people who have been officially diagnosed with celiac disease, properly educated about where gluten hides, and given adequate follow-up care -- do not heal -- even after 5 years of treatment with a gluten-free diet!
In addition, Mayo Clinic researchers also learned that those with the most extensive villi damage were those who found it the most difficult to recover.
And the Mayo Clinic isn't the only one coming up with these shocking statistics.
The American Journal of Clinical Nutrition published an article last February, 2018, where researchers found that the average gluten consumption of those on a gluten-free diet is well over 200 mg a day!
That's milligrams, and not parts per million!
The meta-data study discovered that those sticking to a gluten-free diet, without cheating, accidentally ingest from 100 to 400 mg a day. When you consider that prior research performed by Dr. Fasano observed that 50 mg is the upper limit for safety, it's easy to see why it takes so long to heal.
Since you may just be starting out on your super-sensitivity journey and feel lost about where to begin, I'm going to share with you the 7 lessons that I have learned over the years from tracking down the hidden gluten in my diet.
Hopefully, what I learned will help you get a tighter reign on your gluten consumption, too.
Lesson #1: Gluten-Free Blogs and Forums Speak to the Average Celiac
Since the facts shared in the Mayo Clinic study cast such a dark shadow over the whole point of ditching gluten, if you're still suffering with symptoms, you might be tempted to begin searching for answers on celiac blogs and gluten-free forums.
That's what I did.
However, I was shocked by the attitude of some of the long-term forum members I ran into, as well as the information they were actually giving out to newbies or those who were still ill.
Many of these knowledgeable people didn't have the capacity to see beyond their nose. They could only accept their own personal experience as real, plus the beliefs and advice of those they considered to be authoritative.
Those with a different experience were labeled obsessive or fearful of gluten.
Most blogs, forums, and egroups only pass out what I call generic information. They regurgitate what celiac organizations, popular research scientists, and celiac experts have to say about the average celiac.
A few bloggers will share their personal experiences, but those who are super-sensitive tend to stay pretty quiet about it. You're not going to find a lot of helpful information on a typical blog or forum.
They aren't written for super-sensitive celiacs.
They are written for the majority.
It wasn't very long before I realized that a lot of these well-researched celiacs have turned gluten-free living into a religion. Not only do they quote and repeat the party line, what celiac organizations say, but they also consider certain individuals within the celiac community to be infallible.
The words of these researchers, physicians, and celiac experts are put forth in forum posts, as well as the comments on blogs, as being the final word on a given gluten-free topic. Personal opinion of those in the spotlight is presented as fact.
Oddly enough, a few years ago, many of these same authoritative individuals were publicly stating that non-celiac gluten sensitivity did not exist. There was only celiac disease and dermatitis herpetiformis.
If you didn't test positive for one of these two forms of celiac disease, you were told that gluten wasn't your problem.
Today, we know that isn't true.
Non-celiac gluten sensitivity does exist.
Lesson #2: Scientific Research is Not Fact
For a long time, there's been this weird notion within the various groups I've belonged to that only things documented by scientific research is reliable.
This is why researchers, physicians, and celiac experts don't believe you can react to the steam from a boiling pot of semolina pasta. Nor that you can accidentally gluten yourself by touching a doorknob.
If you tell them that gluten in your favorite shampoo is the culprit for that rash down your back or belly ache, they'll start yelling at you to keep your mouth shut when you shower.
 |
| It's easy to accidentally get shampoo in your mouth when you shower. |
For the most part, celiacs who thrive on doing research can't wrap their minds around gluten reactions that haven't been documented by science -- yet.
In their mind, your reaction to gluten, along with the personal experiences of those who are super-sensitive to gluten residues, do not exist.
Recent research into the biological reactions that people have to different foods is now documenting the fact that everyone doesn't react the same.
This is something a lot of us already knew, but science is just catching up to the idea that what makes my blood glucose unstable or elevated, and what corrects those issues, will be different from what makes your blood glucose level unstable or elevated, and what corrects those issues for you.
The same principle can be applied to gluten.
Each person has a different tolerance level, which means that the amount of residual gluten that triggers an immune system response violent enough to cause symptoms will be different in each individual.
In fact, the document put out by the FDA that was used to craft the gluten-free labeling law said that super sensitives tend to react to lower levels of gluten than what actually causes damage for them.
Symptoms of gluten exposure are like a protective mechanism. The body warns you ahead of time.
The immune system is set up in such a way that it can comfortably handle and get rid of a certain number of invaders without becoming overwhelmed enough to make you feel sick.
However, in our gluten-saturated society, being overwhelmed by residual gluten is becoming more common, especially with the new FDA labeling laws siding with the food manufacturer rather than those who suffer from gluten intolerance.
The reality is that no matter what bloggers and forum moderators and participants have to say, your personal experience matters. You need to listen to your body when it talks to you.
In fact, in most cases, experiential evidence is far more accurate than science because scientific studies can only look at a finite group of individuals and make conclusions on what they observe in those individuals only.
What I've come to realize is that the conclusions about study participants may or may not apply to you. Placing the conclusions put forth by the researchers onto a pedestal of authority is insane.
What was true yesterday, scientifically, won't necessarily be true tomorrow, once further evidence comes forth, so the best that a scientist can do is guess as to what the data means.
Lesson #3: If You're Still Reacting Accept the Fact that It's Gluten
With so many individuals on gluten-free diets still suffering various symptoms and abnormalities, despite strict adherence to a gluten-free diet, it's not really helpful for long-term celiac community members to discount those who come forward to courageously share their gluten stories.
While it's true that despite having celiac disease or non-celiac gluten sensitivity everything that makes you feel bad is not due to gluten, my own experience in tracking down hidden sources I've previously missed hasn't backed up many of the ideas that state:
- You might have picked up a virus.
- You might have additional food sensitivities that need to be addressed.
- You might not have given your intestines enough time to heal.
- You might be eating too many processed foods.
You might . . .
You might . . .
See the uncertainly there?
I was amazed at just how quickly people in celiac forums or at gluten-free blogs are to brush off as impossible what those with celiac disease and non-celiac gluten sensitivity are really going through.
In fact, "You can't be reacting to gluten," is said just as much as, "You might . . ."
While searching out the cause of continual stomach upsets I was experiencing a few years ago, one of the most important lessons I learned was this:
If you believe people who think-they-know what's going on with you and base your decision to seek, or not seek, where gluten might still be hiding in your personal lifestyle just because they do not believe your symptoms are caused by gluten contamination, it will keep you sick.
Period.
You need to follow what your body is telling you and not those who believe they know what's true for you.
For years -- and I mean years -- I eliminated a ton of foods from my diet trying to find what was blocking the body's ability to heal. After 4 or 5 years of listening to the celiac community, I said forget it.
It's NOT food sensitivities.
It's the gluten. It has ALWAYS been the gluten!
Lesson #4: Hidden Gluten is the No. 1 Reason Why Celiacs Don't Heal on a Gluten-Free Diet
 |
| The hidden gluten in gluten-free products is why you don't heal on a gluten-free diet! |
That's true in other countries, such as Italy, as much as it is true here in the U.S., including studies done by Dr. Fasano, one of the authoritative researchers celiacs like to hold up as being infallible.
Every study I've read so far that has looked into the issue of people not responding to gluten-free diets has found exactly the same thing. The data numbers differ a little, but overwhelmingly, the number of celiacs who have:
- food sensitivities
- microscopic colitis
- Crohn's disease
- irritable bowel syndrome
- refractory celiac disease
That's scientific fact!
Reading these studies for myself were very eye-opening for me.
For example, when Dr. Fasano and colleagues looked at 1,288 patients referred to the University of Maryland Center for Celiac Research between the years of 2005 and 2011, only 21 patients qualified for a potential refractory celiac disease diagnosis.
Further, of the 17 patients that were placed on a modified gluten-free diet that eliminated all potential gluten residues in their foods, and completed the study, 14 responded favorably. In fact 11 of those 17 individuals were even able to return to a typical gluten-free diet after their recovery.
The take-away is this:
While food intolerance, colitis, Crohn's disease, IBS, and RCD might be the culprit for your continued symptoms after going gluten free for several months and not responding, in the majority of cases, they are not.
Most of the time, when symptoms continue on a gluten-free diet, you are being glutened in some way.
In the research study above, it was contaminated grains and processed foods that allow up to 20 ppm of gluten that were preventing most of the study participants from healing. And this coincides with what the most recent metadata analysis found, as well.
Therefore, it won't always be something obvious. It could be something as minor as the wheat starch in the brand of Xanthan gum you're using.
Lesson #5: It Is NOT Worth Your Time to Chase Food Allergies and Sensitivities
Decades.
That's how much time I spent chasing after potential reasons for being sick and in pain all the time.
In the beginning, before the Internet existed, I spent hours in the public library, checking out and reading books on nutrition, health, diet, allergies, multiple chemical sensitivity, and food intolerance.
Over the years, I've tried:
- several elimination diets
- vegetarian diet
- low-carb high-fat diet
- low-carb dairy-free diet
- low-carb dairy-free corn-free diet
- low-carb low-fat diet
- meat-only diet
- well-balanced diet
- low-sodium diet
- eat for your blood-type diet
- low-glycemic diet
- whole-foods only diet
- sulfite-free diet
- organic-only diet
- digestive enzymes
- pro-biotics
I have no allergies to food or pollen.
It took me awhile to wrap my brain around the idea that hidden gluten is the number one reason why someone is still reacting because research-loving celiacs like to point out that when a celiac doesn't feel well they automatically start blaming gluten.
While that tendency is easy to see within the gluten-free community, why is that a problem?
Hidden gluten will keep your intestines inflamed and your villi damaged until you discover where it's hiding and eliminate the source from your life.
- That's been my experience.
- That's what scientific research says.
- That's the truth.
Maybe you'll chase after several red herrings, such as allergies or another diagnosis.
If you're lucky, eventually you'll come to realize that the people who are telling you it can't be gluten don't know what they're talking about because they are not sick. A standard gluten-free diet works for them, even though it doesn't work for you.
Lesson #6: Gluten-Free Safe Lists are Not Accurate
When secondhand forest fire smoke blew into Utah from California a couple of years ago, my typical gluten symptoms become more violent and more frequent.
At the time, I just figured that my body was simply trying to detox from the smog.
I spent days hiding out in our basement apartment with the air filter running 24-7 and blaming the digestive problems on air quality. However, once the air cleared, those gluten-like reactions didn't go away.
That's when my inner doctor came forth and started throwing out a lot of evil thoughts of what it might be:
- Are you allergic to eggs now?
- Was the doctor right? Do you have an ulcer?
- What if you have refractory celiac disease?
- With no gall bladder, maybe you're just eating too much fat.
- Could there be an emotional component to what's going on?
- What if you have inflammatory bowel disease like colitis?
- Perhaps you have Crohn's instead of celiac disease.
- Maybe you have intestinal cancer since you ate gluten for decades.
What I learned from that research was that diagnosing celiac disease, microsoptic colitis, and Crohn's disease seems to depend on which part of the intestinal tract is damaged.
However, that information didn't solve my current dilemma.
Oddly enough, I was reacting to the intensity of the problem by running around doing the very thing that people on blogs and at celiac forums suggest:
I was looking for something that wasn't gluten-related.
However, that only prolonged the agony.
When I finally came to my senses and started paying closer attention to what we were eating and how my body was reacting to those foods, a familiar pattern emerged.
I've always had problems digesting fats, so I wasn't eating very much of it. Intestinal inflammation makes it difficult for the body to absorb fats, but at the time, I hadn't connected the dots yet.
With so many people telling me to look in a different direction than gluten for the answers, I was focusing on the wrong things.
The digestive issues were worse in the morning, so I finally reached a point where I was ready to concede that perhaps the problem was diet related. As a result of that determination, I paid closer attention to breakfast.
What I learned about myself was that one tablespoon of bacon fat used to scramble our eggs left me feeling okay for the day. I had no cramps, no vertigo, no brain fog.
Half that amount in real butter, however, made me very sick. I would experience cramps within half-an-hour and be running for the bathroom all day.
At first, I thought it might be dairy. Except, I wasn't having that type of reaction to the little bit of cheese I ate. Nor the ice cream that hubby and I enjoy several nights a week.
Just the butter.
That was confusing. Almost every single celiac-safe foods list I've ever seen tells you that all dairy products are always gluten free, so how could I be reacting to butter?
Yet, I was.
 |
| Not all dairy products are gluten free. Butter can be made from shelf-stable milk that contains gluten additives. |
At that point, I opened up the freezer and stood there looking in at the six pounds of butter I had stored there. The butter we'd been using wasn't the the Amish Country roll butter we'd been purchasing before we moved into the basement apartment.
It was a brand of butter that hubby bought when he was working up north a few months prior to getting sick.
After doing a bit of research on dairy products and gluten, I walked away completely shocked. Not only do you need to question what's being shared on blogs, in comments, and on forums regarding what might be keeping you sick, but even the gluten-free safe lists are not accurate.
After hunting down a Macey's grocery store and switching back to the butter we were using before I started reacting, the cramps, digestive issues, and even the trouble with dietary fats slowly corrected themselves and disappeared over the course of a few weeks.
In fact, for the first time since going gluten free, my stomach didn't hurt!
I still felt exhausted and sometimes had sleeping problems, but we had been eating that brand of butter for a long time. I'm certain that it did a lot of accumulative damage.
How could it be otherwise?
At $2 a pound, hubby brought home several pounds of butter almost every time he went up north, even though we didn't need more, so we had been eating that brand of butter for several months.
In a knee-jerk reaction to all of this, we also stopped bringing home store-brand hard cheeses and switched back to Daisy sour cream, just to be safe.
There was no cottage cheese in our area at the time that didn't contain Xanthan gum, so we decided to stick with the Meadow Gold that our local Costco sold since I only used it very infrequently.
I wanted to give the intestines plenty of space to heal up.
Lesson #7: You are NOT Living in Fear Just Because Someone Says You Are
The biggest lesson for me in all of this is that most people who spend their time blogging, commenting on blogs, moderating forums, or hanging out there mean well, but most of them do not know what they are talking about when it comes to gluten sensitivity.
They are simply parroting statements that people they respect have shared, without considering the fact that many of those so-called authoritative statements are simply opinion based on hypothesis, theories, and what's known-to-date, rather than facts.
Very little is known about celiac disease, and even less about non-celiac gluten sensitivity, so there is no way to know whether your exaggerated reactions are coming from gluten or something else.
It's irresponsible to say that they are not gluten.
Believing that people cannot react:
- to airborne gluten
- to walking down the bread isle of the grocery store
- from eating at the same table with someone who is eating gluten
- from touching something with gluten
Anything that can get into your lungs or on your hands can wind up in your stomach.
The bottom line is that you don't have to sit around and put up with a daily stomach ache or migraine just because vocal gluten-free community participants believe you're nuts.
You also don't have to put yourself in harm's way by going out to eat or eating something that someone else made -- if you don't want to.
You are NOT living in fear just because someone else believes that you are.
The statements you read at blogs and forums are more about the person speaking, than they are about you.
You are FREE to ignore what other people think.
You are FREE to hunt down the various ways in which gluten is still sneaking into your life and nip them in the bud.
And most importantly, you are FREE to finally become one of the 2 in 3 celiac individuals that actually heal and fully recover from the physical damage caused by eating gluten.
We are definitely all different and react in different ways and to different things. I had to figure out many of the ways I was getting exposed to trace gluten on my own. I would have never figured all of them out if I just relied on celiac websites, forums, and blogs. My doctor is surprised by the things I've told her cause me problems, from grocery packages to my computer stuff and lunchbox that wipes could not remove all the gluten. My keyboard, mouse, and lunchbox were all purchased after I went gluten free, and I'm pretty much the only one who uses them. It's crazy what we have to deal with sometimes.
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