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| Celiac Disease: Do you have to be skinny to have gluten intolerance? |
Celiac disease is one of the most under-diagnosed diseases today, even though it affects 1 in 133 people worldwide -- about 3 million people in the U.S. alone.
Non-celiac gluten sensitivity is thought to affect 6 times more people than have celiac disease, but it is just as under-diagnosed.
WHY?
I first wrote this post after coming across a thread on a gluten-free forum that reminded me of my own problems finding dependable medical care.
It still floors me today that so many doctors have no clue how to suspect and diagnose celiac disease, let alone treat it.
In this particular case, a young girl went to a colonoscopy and endoscopy specialist looking for help, but the doctor’s first reaction was to her weight:
“I see you’re quite big,” he said, “not skinny like your mother. Are you sure you have celiac disease?”
Despite the fact that celiac disease is an inherited condition and you have a 1 in 20 chance of triggering the disease (if you carry the gene yourself and a first-degree relative also has celiac), this doctor refused to even consider the possibility of gluten intolerance.
Most likely, his ignorance was due to his outdated medical training and lack of celiac awareness.
Celiac disease is not limited to just underweight people. That stereotype has not held up to scientific scrutiny.
In fact, the presentation of celiac disease is changing at such an alarming rate that it is no longer even spoken of as a gastrointestinal condition.
Today, celiac disease is known to be a multi-system condition that can affect any organ or body system, including the central nervous system.
Over the past 30 years, there has been a dramatic shift from classic celiac disease symptoms upon diagnosis to an abundance of atypical presentations.
The data on weight isn't difficult to find.
Yet, many doctors continue to insist that only skinny people can have celiac disease.
While it's true that many people do suffer with malnutrition at the time of diagnosis, being normal weight, overweight, or even obese does NOT exclude you from having celiac disease. Nor does being overweight mean you are overfed.
Here's the scoop:
Physicians do understand the basics:
Celiac disease is an autoimmune condition, where the immune system reacts to the gluten in your diet. When you eat wheat, barley, or rye, the inflammatory response damages the lining of your small intestine.
Since the villi are the hair-like projections that line your digestive tract and absorb nutrients from the food you eat, consuming gluten foods and beverages results in:
Most of the time, physicians cling to outdated stereotypes that tell them to look for patients who appear sickly and malnourished.
Skinny folks like this girl’s mom.
If a patient presents with vague symptoms and is overweight or obese, most doctors won't even consider celiac disease as a possibility.
Why?
Most patients diagnosed in the 1980s were experiencing severe diarrhea and weight loss, but in a lot of cases, that doesn’t hold true today.
In fact, most people who have celiac disease do not have any symptoms at all.
Of those who do:
It's common to be misdiagnosed with irritable bowel syndrome or inflammatory bowel disease because the nation's trend toward ever-increasing obesity is never looked at realistically when it comes to celiac disease.
I've even heard stories of doctors who still believe that celiac only happens to children.
In 2001, Dr. Peter Green and colleagues published an article in the American Journal of Gastroenterology about research they did on 1612 individuals. Seventy-five percent of those individuals had a biopsy-proven diagnosis.
Most were in their 40s to 60s and had symptoms for an average of 11 years before finally getting diagnosed correctly.
While a little more than half were diagnosed promptly, one-third had gone to two or more gastroenterologists and five of them had intestinal cancer, due to the delay in being diagnosed.
That doesn’t sound promising on the part of the medical profession figuring out that you have celiac disease, but that long of a delay sure holds true for me.
My own symptoms and physician shuffling started over 20 years ago, and my health has deteriorated with each passing year. There are times I even think I might have had celiac disease throughout my childhood.
I know I had it by the time I delivered my first child because the nurses had trouble getting the after-delivery bleeding to stop. I spent most of my hospital stay in the recovery room.
I don’t blame this young girl’s decision to go gluten free on her own, without an endoscopy, because that’s the same decision I came to myself. I had to diagnose myself.
But that wasn't until after my husband and I walked out on my doctor in southern California when he wanted to send me to their Internist department for the vertigo and off-balance problems.
And it wasn't until after we walked out on another doctor in Utah who wanted to look into the possibilities of an ulcer, rather than celiac disease. This was after she examined me and discovered my upper small intestine was inflamed.
Regardless of your symptoms, many doctors won’t test you for celiac disease if you’re fat.
There is no lack in the medical literature about the connection between celiac disease and overweight.
In fact, findings published in the American Journal of Gastroenterology in 2006 by Dr. William Dickey found only five percent of those he looked at were underweight. That means that only five out of every 100 individuals diagnosed with celiac disease are skinny.
Only five percent are thin!
In addition, this particular review found 39 percent were overweight. That’s more than one-third of the participants. Of those overweight individuals, 13 percent were classified as obese.
A whopping 39 percent are overweight!
According to this scientific study, individuals are more likely to be overweight than skinny at the time of diagnosis!
Earlier to this, in the British Medical Journal, Dickey also published a small survey that found similar results.
That study saw a higher percentage of celiac individuals with an extremely low BMI, about 22 percent, but the percentage of overweight individuals stayed the same, about one-third.
The University of Chicago's Celiac Center also took a closer look at the patients they were treating. In their own investigation, they discovered that 38 percent were overweight or obese, with older patients more likely to be obese at the time of diagnosis than younger patients.
Even more disturbing was the fact that after going on a gluten-free diet, many of these overweight and obese patients continued to gain weight.
Further investigation found that 22 to 32 percent of all individuals with celiac disease, nationwide, are initially overweight or obese despite the fact that many of them present with some degree of malabsorption.
The indication from these and several other studies proves that overweight and obesity is commonly found among those with celiac disease.
It is not rare.
And the lack of celiac awareness and failure to recognize this fact sets many folks up for more autoimmune diseases as well as additional health risks, such as cancer.
In fact, the celiac center at the University of Chicago often gets calls from frustrated overweight and obese individuals because their personal doctor won't test them for celiac disease.
Back in December of 2007, Regina Wilshire of the Weight of the Evidence blog took a look at malnutrition and obesity. She found many studies that clearly linked overweight with various deficiencies and assured her readers that the link between obesity and malnutrition was not new.
However, other theories are equally valid. Some, like Jenny from the Blood Sugar 101 website, believe that genetic damage from the following can also play a role:
In addition:
In my research, I've found that the hormone leptin sits at the heart of satiety, so any degree of leptin resistance or difficulties in leptin passing through the blood brain barrier can mess with the signals that leptin gives to the hypothalamus in the brain.
If leptin can't communicate with the brain, it results in overeating – regardless of how stuffed your fat cells are.
Reduced leptin levels also lower metabolic rate as well as increase hunger. Fat cells secrete leptin, alerting the brain to how full your fat cells are, so when leptin is able to bind to its receptors in the brain, you eat less.
This is how the body struggles to maintain balance.
It doesn’t mean that calories don’t matter, but the hypothalamus takes care of your energy balance for you, depending on how much leptin has bound to its leptin receptors.
In response, the hypothalamus ups or lowers hunger, ups or lowers your desire for activity, without you having to consciously count or consciously do anything.
If leptin can't get into the hypothalamus to bind to those receptors, due to excessive triglycerides in the bloodstream, or if the hypothalamus doesn’t correctly interpret the messages, due to inflammation in the brain (most likely brought about by leaky gut syndrome), it can’t regulate body fat properly.
The result is overweight and obesity.
Very few celiacs are skinny.
Most celiacs are normal weight, but for those who aren’t, correcting the imbalance can be as simple as eliminating gluten (as well as any other food sensitivities).
Food sensitivities put the body under stress, which results in elevated cortisol and insulin levels.
Once you go gluten free, cortisol levels should fall, since the body won't be under continual stress anymore, but healing the gut requires you to switch to a nutrient-dense, lower-carbohydrate diet, and get adequate sleep.
These lifestyle changes will allow the hypothalamus to recover, so it can begin doing what it is supposed to do:
Control your body fat levels and weight.
But . . .
If physicians aren’t willing to test for celiac disease unless you’re skinny and sickly (like mine weren’t), most overweight adults and children with celiac disease will continue to suffer, needlessly destroying their health – all due to the lack of celiac awareness on the part of physicians and their insistence that outdated stereotypes still hold true.
While you can always change your doctor, the search for someone who specializes in treating gluten-related disorders can take as long as getting a celiac diagnosis.
For that reason, many overweight people decide to just go gluten free on their own.
In this particular case, a young girl went to a colonoscopy and endoscopy specialist looking for help, but the doctor’s first reaction was to her weight:
“I see you’re quite big,” he said, “not skinny like your mother. Are you sure you have celiac disease?”
Despite the fact that celiac disease is an inherited condition and you have a 1 in 20 chance of triggering the disease (if you carry the gene yourself and a first-degree relative also has celiac), this doctor refused to even consider the possibility of gluten intolerance.
Most likely, his ignorance was due to his outdated medical training and lack of celiac awareness.
Celiac disease is not limited to just underweight people. That stereotype has not held up to scientific scrutiny.
In fact, the presentation of celiac disease is changing at such an alarming rate that it is no longer even spoken of as a gastrointestinal condition.
Today, celiac disease is known to be a multi-system condition that can affect any organ or body system, including the central nervous system.
Over the past 30 years, there has been a dramatic shift from classic celiac disease symptoms upon diagnosis to an abundance of atypical presentations.
The data on weight isn't difficult to find.
Yet, many doctors continue to insist that only skinny people can have celiac disease.
While it's true that many people do suffer with malnutrition at the time of diagnosis, being normal weight, overweight, or even obese does NOT exclude you from having celiac disease. Nor does being overweight mean you are overfed.
Here's the scoop:
Why So Many Doctors Won't Test You For Celiac Disease If You're Fat
Physicians do understand the basics:
Celiac disease is an autoimmune condition, where the immune system reacts to the gluten in your diet. When you eat wheat, barley, or rye, the inflammatory response damages the lining of your small intestine.
Since the villi are the hair-like projections that line your digestive tract and absorb nutrients from the food you eat, consuming gluten foods and beverages results in:
- damaged villi and crypts
- malnutrition
- malabsorption
Most of the time, physicians cling to outdated stereotypes that tell them to look for patients who appear sickly and malnourished.
Skinny folks like this girl’s mom.
If a patient presents with vague symptoms and is overweight or obese, most doctors won't even consider celiac disease as a possibility.
Why?
Most patients diagnosed in the 1980s were experiencing severe diarrhea and weight loss, but in a lot of cases, that doesn’t hold true today.
In fact, most people who have celiac disease do not have any symptoms at all.
Of those who do:
It's common to be misdiagnosed with irritable bowel syndrome or inflammatory bowel disease because the nation's trend toward ever-increasing obesity is never looked at realistically when it comes to celiac disease.
I've even heard stories of doctors who still believe that celiac only happens to children.
What Do Scientific Articles Say About Overweight Celiacs?
In 2001, Dr. Peter Green and colleagues published an article in the American Journal of Gastroenterology about research they did on 1612 individuals. Seventy-five percent of those individuals had a biopsy-proven diagnosis.
Most were in their 40s to 60s and had symptoms for an average of 11 years before finally getting diagnosed correctly.
While a little more than half were diagnosed promptly, one-third had gone to two or more gastroenterologists and five of them had intestinal cancer, due to the delay in being diagnosed.
That doesn’t sound promising on the part of the medical profession figuring out that you have celiac disease, but that long of a delay sure holds true for me.
My own symptoms and physician shuffling started over 20 years ago, and my health has deteriorated with each passing year. There are times I even think I might have had celiac disease throughout my childhood.
I know I had it by the time I delivered my first child because the nurses had trouble getting the after-delivery bleeding to stop. I spent most of my hospital stay in the recovery room.
I don’t blame this young girl’s decision to go gluten free on her own, without an endoscopy, because that’s the same decision I came to myself. I had to diagnose myself.
But that wasn't until after my husband and I walked out on my doctor in southern California when he wanted to send me to their Internist department for the vertigo and off-balance problems.
And it wasn't until after we walked out on another doctor in Utah who wanted to look into the possibilities of an ulcer, rather than celiac disease. This was after she examined me and discovered my upper small intestine was inflamed.
Regardless of your symptoms, many doctors won’t test you for celiac disease if you’re fat.
How Many Individuals with Celiac Disease are Overweight?
There is no lack in the medical literature about the connection between celiac disease and overweight.
In fact, findings published in the American Journal of Gastroenterology in 2006 by Dr. William Dickey found only five percent of those he looked at were underweight. That means that only five out of every 100 individuals diagnosed with celiac disease are skinny.
Only five percent are thin!
In addition, this particular review found 39 percent were overweight. That’s more than one-third of the participants. Of those overweight individuals, 13 percent were classified as obese.
According to this scientific study, individuals are more likely to be overweight than skinny at the time of diagnosis!
Earlier to this, in the British Medical Journal, Dickey also published a small survey that found similar results.
That study saw a higher percentage of celiac individuals with an extremely low BMI, about 22 percent, but the percentage of overweight individuals stayed the same, about one-third.
The University of Chicago's Celiac Center also took a closer look at the patients they were treating. In their own investigation, they discovered that 38 percent were overweight or obese, with older patients more likely to be obese at the time of diagnosis than younger patients.
Even more disturbing was the fact that after going on a gluten-free diet, many of these overweight and obese patients continued to gain weight.
Further investigation found that 22 to 32 percent of all individuals with celiac disease, nationwide, are initially overweight or obese despite the fact that many of them present with some degree of malabsorption.
The indication from these and several other studies proves that overweight and obesity is commonly found among those with celiac disease.
It is not rare.
And the lack of celiac awareness and failure to recognize this fact sets many folks up for more autoimmune diseases as well as additional health risks, such as cancer.
In fact, the celiac center at the University of Chicago often gets calls from frustrated overweight and obese individuals because their personal doctor won't test them for celiac disease.
Overweight and Obesity is a Symptom of Malnutrition
Back in December of 2007, Regina Wilshire of the Weight of the Evidence blog took a look at malnutrition and obesity. She found many studies that clearly linked overweight with various deficiencies and assured her readers that the link between obesity and malnutrition was not new.
However, other theories are equally valid. Some, like Jenny from the Blood Sugar 101 website, believe that genetic damage from the following can also play a role:
- chemicals found in plastics
- the environment
- industrial wastes
- the air
- personal health care products
- our food and water supplies
In addition:
- lack of sunlight
- high insulin levels
- insulin resistance
- metabolic syndrome
- excess hunger
- food sensitivities
- leaky gut
- hormonal imbalance
The Role of Leptin and Leaky Gut Syndrome
In my research, I've found that the hormone leptin sits at the heart of satiety, so any degree of leptin resistance or difficulties in leptin passing through the blood brain barrier can mess with the signals that leptin gives to the hypothalamus in the brain.
If leptin can't communicate with the brain, it results in overeating – regardless of how stuffed your fat cells are.
Reduced leptin levels also lower metabolic rate as well as increase hunger. Fat cells secrete leptin, alerting the brain to how full your fat cells are, so when leptin is able to bind to its receptors in the brain, you eat less.
This is how the body struggles to maintain balance.
It doesn’t mean that calories don’t matter, but the hypothalamus takes care of your energy balance for you, depending on how much leptin has bound to its leptin receptors.
In response, the hypothalamus ups or lowers hunger, ups or lowers your desire for activity, without you having to consciously count or consciously do anything.
If leptin can't get into the hypothalamus to bind to those receptors, due to excessive triglycerides in the bloodstream, or if the hypothalamus doesn’t correctly interpret the messages, due to inflammation in the brain (most likely brought about by leaky gut syndrome), it can’t regulate body fat properly.
The result is overweight and obesity.
How Do You Correct the Hypothalamus?
Most celiacs are normal weight, but for those who aren’t, correcting the imbalance can be as simple as eliminating gluten (as well as any other food sensitivities).
Food sensitivities put the body under stress, which results in elevated cortisol and insulin levels.
Once you go gluten free, cortisol levels should fall, since the body won't be under continual stress anymore, but healing the gut requires you to switch to a nutrient-dense, lower-carbohydrate diet, and get adequate sleep.
These lifestyle changes will allow the hypothalamus to recover, so it can begin doing what it is supposed to do:
Control your body fat levels and weight.
But . . .
If physicians aren’t willing to test for celiac disease unless you’re skinny and sickly (like mine weren’t), most overweight adults and children with celiac disease will continue to suffer, needlessly destroying their health – all due to the lack of celiac awareness on the part of physicians and their insistence that outdated stereotypes still hold true.
While you can always change your doctor, the search for someone who specializes in treating gluten-related disorders can take as long as getting a celiac diagnosis.
For that reason, many overweight people decide to just go gluten free on their own.
I eat healthier than anyone I know, always have. I am vegan and do not eat any processed foods yet years of undiagnosed celiac made me overweight. I didn't over eat and couldn't figure out why I kept gaining weight. I'm only a little overweight but with my diet I shouldn't have been at all over weight. I can't wait until everything evens out and I feel healthy again. I was diagnosed 9 mos ago finally by a great doctor who took the time to listen to my symptoms.
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