5 Startling Facts About Celiac Disease that Could Save Your Life

A gluten-free diet is one of the hottest trends today.

In fact, according to the NDP Group, a global research and marketing company, one in four consumers feel that everyone should go gluten free for their health.

Everyone.

While that might sound a bit extreme, statistics point out that 11 percent of American households do follow a gluten-free diet, and that figure is actually quite low because celiac disease is severely under-diagnosed.

While 1 in 100 people worldwide are thought to have celiac disease, 80 percent of those people don't know it!

The numbers of undiagnosed is a direct result of the lack of celiac awareness in the U.S.

The current estimates are that 3 million people in the U.S. are thought to have celiac disease and 18 million have non-celiac gluten sensitivity, so only 400,000 individuals actually have an official celiac diagnosis.

That's a very small fraction of the multitudes who have this serious condition, which puts the greater majority of those with celiac disease or non-celiac gluten sensitivity at high risk for acquiring additional immune dysfunctions, malnutrition, and even death.

Some of the problem with getting a celiac diagnosis is due to the way a gluten-free diet receives a lot of mocking in the press about being a fad diet, rather than presenting it as a legitimate medical treatment.

Other challenges for celiacs include the way the medical community continues to cling to the outdated ideas of how rare celiac disease is or how it presents.

For most celiacs, it's difficult to find a doctor that will even test for the disease if you don't present with classic, textbook symptoms.

This is especially true if you're overweight.

With a medical diagnosis so difficult to come by, many people who experience the symptoms of celiac disease have decided to self-diagnosis themselves by going gluten free without any medical supervision, so the numbers are a bit off, but the results of that personal decision have been a greater outpouring of ridicule and desperate pleas by the media to return to a grain-heavy diet.

What they fail to mention is that the original push toward whole grains originated from the food industry. It didn't come from the medical community.

[For the details on how whole grains became a mantra, see What's All the Fuss About Whole Grains at our Life After Low-Carb blog.] 

The multitude of news reports, celiac jokes, and restaurants marketing to those who are gluten free by choice, rather than making a serious effort to prepare a safe meal for celiacs, doesn't help.

In fact, they have only contributed to the sour attitudes, ignorance, and snide remarks about celiac disease often demonstrated by those who are lacking celiac awareness.

Celiac disease, and even non-celiac gluten sensitivity, isn't benign.

It's a life-threatening condition.

And its prevalence in North America is doubling every 15 years.

If that rate continues, celiac disease will soon become an epidemic. Not that it isn't already thought of in that way, but there is a very strong push these days by celiac organizations to get everyone who has the disease properly diagnosed.

Diagnosis depends on having accurate information.

However, personal and professional agendas often get in the way of that, so misconceptions are often presented as fact.

While some of the misconceptions presented are not necessarily harmful, others can be a matter of life and death, especially if you're super sensitive to low residues of gluten.

Most people, even within the gluten-free community, do not believe in super-sensitive reactions, so they often support the food manufacturer for fear that their favorite gluten-free products will disappear from the shelves.

If you're new to a gluten-free diet, sorting out the truth from the lies can take a bit of time, but here are some not-well-known, startling facts about celiac disease that could very well extend your life:

1. Celiac Disease is a Life-Threatening Autoimmune Condition

Celiac disease is often presented to the public as an allergy or food intolerance, to wheat, barley, and rye, even by medical professionals. But it is actually a life-threatening autoimmune condition where abstaining from gluten and its derivatives are essential to stop the disease from progressing.

Special precautions and preventative measures of keeping gluten-free foods from becoming contaminated with gluten are absolutely necessary to keep the immune system from overreacting.

Celiac disease is an inherited condition that results in an abnormal immune system reaction whenever you consume wheat, barley, or rye.

This dysfunction causes severe inflammation of the gut due to an attack that T-cells wage against gluten molecules when your celiac genes bond to gluten fragments and present them to the T-cells as bacteria or a virus.

Getting rid of the toxic gluten molecules damages, and often destroys, the villi that line the intestines.

Villi are hair-like protruding cells that absorb proteins, fats, carbohydrates, vitamins, and minerals, allowing them to pass into the bloodstream for use by the body.

Between the inflammation of the gut and the physical damage to the villi, malnutrition and malabsorption can seriously threaten not only your health, but also your life.

The only way to avoid this life-threatening dysfunction is by completely abstaining from gluten.

When you can't do that, due to your family situation, work environment, or lack of celiac awareness among medical professionals as well as the community, the following complications can result:

• additional autoimmune diseases
• thyroid problems
• hormonal imbalances
• permanent nerve damage
• kidney damage
• liver damage
• inflammatory bowel disease
• refractory celiac disease
• and lymphoma (non-treatable intestinal cancer)

Since vitamin and mineral deficiencies, as well as essential fatty acid and protein deficiencies, can also cause a wide variety of organ and systemic dysfunction and damage, 100-percent compliance to a gluten-free diet is the only way to stop the deadly immune response from wrecking further havoc on the body.

Going gluten free is also the only way to control the inflammation that can be more damaging than celiac disease itself.

When celiac disease goes un-diagnosed or you aren't 100 percent compliant to a gluten-free diet, suffering increases and life expectancy diminishes because the autoimmune reaction causes inflammation to rage throughout the entire body.

Unfortunately, the tendency in the U.S. among medical professionals is to simply treat the symptoms of a disease, rather than the cause.

For that reason, you owe it to yourself to become your own advocate.

If your doctor doesn't mention celiac disease, bring the topic up yourself. And if you don't like the answers you get, seek out a second opinion.

2. Super-Sensitive Celiacs Cannot Handle Even Small Traces of Gluten

Super-Sensitive Celiacs can get glutened
just by eating with others

Traces of gluten are just as detrimental to a super-sensitive celiac as large doses are.

It doesn't matter if you eat a slice of bread or swallow a bread crumb that ended up on your dinner plate. The autoimmune reaction will be exactly the same.

The amount of gluten in a single breadcrumb is huge, though.

Inflammation will spread throughout the body and your immune system will go on the attack, resulting in nasty symptoms and malnutrition that can last for weeks after a single exposure.

This is what makes the gluten-free diet so tricky. Outside of the safety of your own kitchen, with you preparing your own food, you have to consistently dodge:

• classroom projects or work materials
• cupcakes, donuts, and other treats at school or work
• meal contamination issues when eating out
• contact with gluten during social settings
• airborne gluten like flour dust or pasta steam
• safety issues that arise while traveling

It's not like a weight-loss diet where you can take a day off for a special occasion or work-related event.

You have to be constantly aware and extra vigilant about what you put into your mouth every second of every day for the rest of your life, whether you experience uncomfortable symptoms or not.

Gluten reactions are not something you can grow out of, nor are they something that can be cured.

While a gluten-free diet can help you manage the immune response, once the body has created antibodies to gliadin -- the protein molecule that gives celiacs the most trouble -- those antibodies hang around for life, waiting in the shadows for the next fragment of gluten to appear.

3. Up to 60 Percent of Celiacs on a Gluten-Free Diet Do Not Heal

Non-responsive celiac disease is more common than people think.

While a few patients do have true refractory celiac disease, where even a 100-percent gluten-free diet won't shut the immune system off, most of those who don't respond well to a standard gluten-free diet are still getting glutened by hidden sources of cross-contamination. 

The current FDA labeling law was designed to make things easy for the food manufacturer. It wasn't created to keep all celiacs safe. Only the majority.

Or, at least, that's what they thought.

While upstanding members of the gluten-free community coupled with gluten certification organizations fought for the law to be enacted, the official law as written doesn't really do much to guard safety.

Manufacturers are NOT required to test their products or keep records of verification that such testing was ever done. 

All that's required is reasonable faith that the product contains less than 20 ppm of gluten, which is why gluten-free Cheerios and other oat products that use mechanical sorting techniques, such as Bob's Red Mill gluten-free oats and Nature's Path gluten-free products with oats, have been able to use these alternative oat sources and still call their products gluten free.

I do not have an opinion on Quaker Oats gluten-free oatmeal yet. Although they also use mechanical sorting techniques, their process, ppm standard, and the independent testing done by Gluten Free Watchdog is hopeful for standard celiacs, at least.

I don't know if the product is usable by super-sensitive celiacs yet, since I react to all forms of oats, but the personal standard Quaker is using is less than 10 ppm.

Hubby doesn't react to Quaker Oats like he does to Cheerios.

Those who are super sensitive to gluten or those who need to be on a 100-percent gluten-free diet to cut the inflammation enough for healing will continue to experience symptoms, inflammation, and malnutrition on a standard gluten-free diet of up to 20 ppm of gluten.

The definition of a gluten-free diet isn't a diet that is 100-percent free of gluten, and since many celiacs have trouble giving up their prior lifestyle, such as:

• eating out
• attending social functions
• going to holiday or work-related parties or outings
• letting others prepare food for them
• or business meetings that include food

It's easy for gluten to continue to find its way into the diet, especially if you're trying to recreate the type of diet you were eating before by purchasing a lot of gluten-free specialty products.

A lot of these specialty products, or products created by well-known name-brand manufacturers, are either taking the quantity of gluten within their products up to the legal limit or, like General Mills, finding loopholes in the law to squeeze through.

Even my husband reacts to many processed foods, so it isn't just super-sensitive celiacs that need to be careful when adding processed foods to their core gluten-free diet.

For an explanation of what a core gluten-free diet is, as well as a personal example and a list of brand names, check out the following blog post: Here's My Gluten Free Food List to Make Shopping Quick and Easy!

Giving up all gluten is life altering and can be challenging for those who have an emotional bond or relationship to food that's suddenly ripped away.

Plus, nutritional experts often recommend that celiacs switch from wheat to gluten-free whole grains even though those grains are often contaminated with traces of gluten.

In addition, many celiacs also react to oats.

While the recommendation by celiac experts is to stay away from oats for at least the first year, giving the intestines time to heal, it's rare to see a new celiac follow that recommendation.

The pull toward familiar foods like Cheerios that provide comfort is too strong.

Plus, the new trend in using mechanically sorted oats, rather than oats grown and processed to a gluten-free protocol, is seriously affecting the gluten-free food supply.

What's rarely considered is the potential for cross contamination with oatmeal in gluten-free foods. Even a strict gluten-free facility, such as Bob's Red Mill has, can produce gluten-free products that are contaminated with oats.

This means you'll react to those products as if they contained gluten.

For super-sensitive celiacs who move to a whole foods diet along with a small handful of ultra-safe processed foods, investigated thoroughly and determined to be 100-percent free of gluten, most of them can begin to heal.

In fact, after sticking to this type of regime for a year or two, some celiacs have even been able to return to a standard gluten-free diet that contains up to 20 ppm of gluten.

Others, however, haven't been as lucky.

Either they react to products that contain up to 20 ppm of gluten right away, or their symptoms reappear shortly after returning to a standard gluten-free diet. 

For a growing number of celiacs, the 20 ppm allowed by law will set off an autoimmune reaction. Reasons vary, but many celiacs would be better served by returning only one food or product to the diet at a time, giving them a better opportunity to keep an eye on how their body handles that particular food.

4. Not All Celiacs Have Celiac Disease Symptoms

The classic textbook celiac presents with:

• bloating
• flatulence
• abdominal pain
• chronic diarrhea
• and weight loss

However, those symptoms are only seen in 35 percent of the patients diagnosed at The University of Chicago's Celiac Disease Center.

Two out of three celiacs do not have intestinal symptoms.

In fact, 41 percent of all adults and 60 percent of the children diagnosed with celiac disease at that center do not suffer with any noticeable symptoms at all.

Some medical authorities believe that this odd statistic is due to the degree of intestinal damage you may or may not have suffered from eating gluten for decades before your diagnosis.

Others believe there is no correlation between symptoms and physical abnormalities.

The different opinions appear to hinge on the definition for celiac disease.

The official definition targets the upper small intestines and villi damage that occurs there, while the destructiveness of an autoimmune attack against gluten can actually spread down the entire length of the intestines, as well as affect other parts of the body, such as the central nervous system, thyroid, kidneys, and brain.

No one presents in exactly the same way.

In fact, according to Dr. Alessio Fasano, the world-renown research scientist and gastroenteriologist that placed celiac prevalance to be 1 in 133 Americans in 2003, the most common presentation for celiac disease is anemia, which is rarely associated with celiac disease unless you have a celiac-savvy doctor.

For that reason, getting a celiac diagnosis can be quite difficult and requires lots of personal advocacy.

The average celiac today goes from doctor to doctor for 6 to 12 years, or even more, before someone finally tests them for celiac disease.

Although my own symptoms began decades ago, I've never been tested. If you're older, like me, especially if overweight, you might have been shuffled from diagnosis to diagnosis for most of your life.

Even if you are lucky enough to have been tested, if you were not eating heavy doses of gluten before testing, because of the way that gluten-containing foods made you feel or because you were on a low-carb diet, the tests weren't interpreted correctly, or too few biopsy samples were taken to be professionally analyzed by a lab -- you can still be told that gluten isn't your problem.

The lack of symptoms makes it extremely difficult to heal since you wouldn't know how or to what degree that gluten was still sneaking into your diet.

Many Super-Sensitive Celiacs chase other food allergies
before discovering that their problem is gluten

Even with symptoms, it's still difficult to pin down exactly what's happening. I ran around for decades chasing other food sensitivity possibilities, rather than trying a super-sensitive celiac protocol because additional food intolerance is the standard excuse that many within the gluten-free community like to dish out.

For those who haven't been diagnosed, the problem is even worse because celiac disease will continue to progress whether you have symptoms or not. 

In fact, some celiac authorities believe that symptoms are an outward sign that the disease has progressed past the upper small intestine, so that when the disease first triggers, symptoms are non-existent.

Iron anemia, osteroporosis, neuropathy, vertigo, arthritis, and other related conditions often manifest first.

No symptoms doesn't mean that damage from eating gluten isn't occurring.

5. Not All Celiacs are Skinny

Malnutrition is a major consequence for continuing to eat gluten.

Once celiac disease triggers, many doctors continue to cling to the outdated idea that all celiacs must look malnourished and be severely underweight.

While that is sometimes the case, more often, it's not. 

Celiac disease is a multi-system, multi-organ disease that triggers a starvation response, but the way your body reacts to starvation will be different for everyone.

You can definitely be overweight and still have celiac disease.

In fact, in a study published in the American Journal of Gastroenterology in 2006, only 5 percent of the celiacs looked at were underweight, while 39 percent of those diagnosed with celiac disease were overweight. Of those who were overweight, 13 percent were obese.

You are more likely to be overweight at the time of diagnosis than skinny.

Another meta analysis published in 2012 was even worse.

In a study conducted by E. Tucker and colleagues affiliated with the University of Birmingham and the Alexandria Hospital in the U.K, nearly half of the patients looked at were overweight at the time of diagnosis.

Whether the weight problems preceded the onset of celiac disease, due to body fat's predisposition to create systemic inflammation, or whether the excess pounds came after celiac disease was triggered is a matter of debate. 

But with 1/3 of the world's population overweight or obese, and 2/3's of those who live in the U.S., it's not surprising that dietary habits would carry over into a gluten-free diet.

The link between malnutrition and obesity has been known for decades, yet medical personnel continue to insist that weight loss is mandatory for a celiac diagnosis.

The most likely culprit, however, is a condition known as metabolic syndrome.

Since malnutrition is stressful on the body, the elevated cortisol and insulin levels that go along with the body's stress response sets you up for blood glucose abnormalities and insulin resistance.

Insulin resistance could also explain why so many celiacs gain a large amount of weight after moving to a gluten-free diet.

Gluten-free diets tend to be heavy on carbs, due to the starvation response by the body seen in so many patients.

The theory often heard within the gluten-free community for weight gain on a gluten-free diet is better calorie absorption as the body heals, but calories are not absorbed.

Calories are a measure of heat produced as food is broken down into components that the body can use. 

Some celiacs have problems absorbing macronutrients -- proteins (amino acids), carbohydrates, and fats -- which improves as the body heals, but how the body handles those macronutrients is a separate topic than calories.

Another possibility is thyroid issues.

Both hypothyroidism and hyperthyroidism can cause weight gain and obesity.

While only 10 percent of those with Grave's Disease experience weight gain as a result, it does happen. In fact, the weight gain occurred so quickly for me -- 50 pounds in 6 months -- that I was fat again before I learned that my thyroid had gone into hyper-drive.

Now that I've learned what it feels like when my thyroid is racing, for me, it's always after I've been glutened.

However, the largest culprit for post-diagnosis weight gain is the craving for starchy foods and sugar. Look at the gluten-free blogs available on the web and you'll quickly see that they are filled to the brim with breads, cupcakes, cookies, pies, and other desserts.

This is a typical, natural response to starvation mode.

Celiac Disease Isn't Easy to Treat or Manage

Celiac disease is a challenging autoimmune condition that's extremely difficult to deal with, manage, and treat due to gluten being a staple of the American diet.

While the standard treatment is to go gluten free, most manufactured foods are processed in a shared facility.

Companies that claim to produce their gluten-free products in separate facilities devoted to gluten-free foods are often smudging the line of communication.

Foods, such as Betty Crocker's gluten-free mixes and Bob's Red Mill gluten-free products, are produced in a separate wing of the main building and not a separate facility.

Because gluten residues can keep you ill if you are a super-sensitive celiac, many celiacs must go to extreme lengths to root all potential areas of contamination out of their life.

For that reason, celiacs are not always taken seriously.

While super-sensitive reactions are not generally understood by the gluten-free community at large, they are far more common than celiac authorities report, especially since celiacs tend to become more sensitive to gluten the longer they remain gluten free.

Celiac disease is a life-threatening condition.

Drastic measures are often called for before the healing process can begin.

If inflammation continues on a gluten-free diet, due to continuing contamination with gluten residue, the body won't be able to absorb macronutrients, vitamins, and minerals properly.

Switching to a whole foods diet and removing all traces of potential gluten residue is often the only answer.