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Celiac Disease and Gluten Sensitivity

Updated on July 7, 2014

Celiac disease is an autoimmune disease where the body's own immune system attacks its own cells in the small intestines. Celiac disease is also called by "coeliac", "sprue", or combinations of these words.

The disease damages the small finger-like protrusions called villi in the small intestines such that the small intestines has decreased ability to absorb nutrients from foods.

This abnormal immune response is triggered by gluten in the food in certain people with the disease. Dr. Peter Green defines it as ..

"a genetic, autoimmune condition that requires exposure to gluten to express itself. It is both common and permanent, although the age of onset ranges from early childhood through late adulthood."

on page 76 of his book "Celiac Disease: A Hidden Epidemic".

Editorial by Alessio Fasano, M.D. writes that ...

"celiac disease is one of the most common lifelong disorders in both Europe and the United States" [reference]

Difference Between Celiac Disease and Gluten Sensitivity

In the below video, Dr. Peter Osborne does a good job explaining all the different terms celiac disease, wheat allergy, gluten intolerance, and gluten sensitivity. He also says that various types of gluten is in all grains. Grains are the seeds of a grass, and these include oats, corn, millet, buckwheat, spelt, rice, and other grains -- not just wheat, barley, and rye as was traditionally taught.

In his article post, Dr. Osborne writes ...

"quinoa is not necessarily safe for ingestion in those with gluten sensitivity. ... rice, corn, soy, and dairy have all been shown to cause inflammatory reactions and or villous atrophy identical to celiac disease in human studies."

In an Underground Wellness podcast, Dr. Osborne provided some good information and resources for people with gluten sensitivity. Among them were mention of ELISA/ACT testing as well as where to find physicians at and American Clinical Board of Nutrition.

Hidden and Silent Celiac

"Hidden epidemic" is an apt description because many people have the disease and do not know it. Some people have Celiac disease but are mis-diagnosed with something else such as perhaps irritable bowel syndrome (IBS), etc.

Over 95% of people with celiac disease go undiagnosed or mis-diagnosed. A person can have the disease on average for 10 years before it is correctly diagnosed.

The book Primal Body, Primal Mind write that ...

"Fully 99 percent of those people who have this entirely curable and potentially lethal condition are completely unaware of the dangerous vulnerability within themselves."[7]

It mentions "curable". What is the cure? Total 100% abstinence from gluten for life.

The book Ultraprevention talks about a patient who had went to multiple doctors for years about his chronic diarrhea with no resolution except for some drugs which were not effective and caused side-effects. It was only when the patient was finally diagnosed properly with Celiac and stopped consuming gluten that the diarrhea disappeared.

There are some people who have Celiac disease who do not have any symptoms -- silent celiac. One study showed that 60% of diagnosed children and 41% of diagnosed adults do not have any symptoms. They most likely found out that they had celiac disease only when a blood relative have the disease and the doctor requests that other family members get tested.

This is because there is a large genetic component with Celiac disease. Celiac disease occurs in 5% to 15% of the offspring and siblings of a person with celiac disease.

How strong is the genetic component? It is strong. Looking at identical twins (with identical genes), 70% of the time, if one have the disease, the other will too. However, this also shows that it can happen that one twin can get the disease while the other twin does not (even though their genes are identical).

Gluten sensitivity can cause damage in other organs beside the gut resulting in many different types of autoimmune diseases including rheumatoid arthritis, hypothyroidism, hyperthyroidism, multiple sclerosis, lupus, type 1 diabetes, etc. In fact, the organ that gluten affects the most is the brain.

The book The Inside Tract writes ...

"even if you haven't been diagnosed with celiac disease, gluten may still be a problem for you. The tricky thing with gluten is that it can do its damage covertly and you might not even realize the harm it's doing until you eliminate it. This is why sensitivity to gluten is sometimes referred to as the "gluten syndrome or spectrum' ... "

Antibody Test for Celiac

If a first degree relative has Celiac disease (or any autoimmune disease of that matter), it is a good idea to get tested for gluten sensitivity. Gluten sensitivity and celiac disease are not the same. Gluten sensitivity is the boarder category and can affect 60% to 70% of the population. This gluten sensitivity can affect any part of the body, joint, brain, bones, etc. Celiac disease is when it affect the small intestines.

Dr. Green writes in bold on page 185 ...

"Children and first-degree relatives of patients positively diagnosed with celiac disease should have blood tests for the condition whether or not they have symptoms."

You do not have to have any symptoms to be gluten sensitivity. If you are gluten sensitive and you continue to consume gluten, then you risk your immune system attacking your own organs.

Usually, the first step is a blood test or a series of blood tests to test for presence of antibodies. See and talk with your doctor. For some older tests method, false negative are quite common. Some source say that blood test is no more than 30% accurate.[7]

Conventional lab tests may not be very accurate and many people who have gluten sensitivity do not get detected. If you get tested positive for gluten sensitivity or celiac, then you know that you have it. However, if you are tested negative, then you do not know anything.[2] You may or may not have an sensitivity to gluten. Even if tested negative, a person can still develop Celiac later in life.

In the Perfect Health Diet, authors writes that ...

"Anti-endomysial antibodies are by no means a foolproof test for celiac disease. Severe damage can be done to the gut without such antibodies."

The antibodies tests only test for certain types of antibodies triggered by certain types of gluten proteins. But there are many different types of gluten and different people may be sensitive to different types.

Some lab tests is only looking for one antibody (such as IgG) that is produced against one gluten protein (typically gliadin). The body can make 5 different antibodies: IgG, IgE, IgA, IgM, IgD. So many other gluten sensitivity will fall through the cracks.

Chris Kresser says in his podcast ...

"it used to be thought that it was just pretty much gluten that caused problems and now we know that the repertoire of gluten peptides that are involved in disease is a lot bigger than we previously thought".

Better Tests for Celiac

Newer antibody tests may be more accurate.

Nora Gedgaudas writes in her book Primal Body, Primal Mind ...

"As of January 2011, a new standard of excellence in testing for gluten sensitivity through affordable salivary panels covering not one but all fractions of gliadin -- with an unprecedented accuracy rate -- is available via Cyrex Labs"[7]

Tom O'Bryan also mentions Cyrex Labs in Dr. Lauren Noel's podcast where he talked about how gluten and other food sensitivity can cause autoimmune diseases.

While it is a good idea for anyone to get tested for gluten sensitivity, it is especially true for anyone with any autoimmune condition to get test because gluten can be a trigger for autoimmune diseases.

Sean Croxton of Underground Wellness explains why in this YouTube Video why Cyrex Labs is the best test for gluten sensitivity...

Learn more about ...

If one is tested positive for gluten, one should also test for cross-reactive foods because the body can react to other foods as if they are gluten. Some of the cross reactive foods include casein, dairy, eggs, soy, yeast, coffee, corn, rice, potato, etc.

EnteroLab has a stool test that anyone can order to test for gluten, casein, soy, egg, and other sensitivities.

This is from the chapter 3 titled "Grains: Are They Really a Health Food?" and contain some of the most excellent information about gluten sensitivity and Celiac disease and is a must read for anyone interested in this subject.

She does not believe in consuming grains -- especially grains containing gluten. Although not all autoimmune diseases are caused by gluten, many of them are. Some believe that autism is a form of autoimmune disease of the brain.

Anyone with autoimmune or autism issues should consider eliminating gluten. Gedgaudas writes ...

"In my opinion, it is always safest to simply assume the presence of gluten sensitivity in these populations, or, frankly, wherever significantly compromised health is an issue."[7]

Dr. Susan Blum writes in The Immune System Recovery Plan ...

"If you have a positive anti-gliadin or anti-deamidated gliadin antibody test, this should tell you to stop eating gluten. Now, the majority of my autoimmune patients are not positive for this test, but that doesn't prevent me from recommending that everyone with an autoimmune disease stop eating gluten. Just because modern medicine hasn't discovered the right laboratory test for you doesn't mean that gluten isn't wreaking havoc with your immune system" [page 51]

Stool Testing

With stool testing of antibodies against gluten, EnteroLab is able to detect gluten sensitivity even earlier. Because there can be antibodies in the intestinal tract (and hence stool) even when there are not antibodies in the blood yet.

Dr. Kenneth Fine's transcript of his talk will give you more info about this.

Intestinal Biopsy Testing for Celiac

Another phase of testing which may or may not be needed as determined by your doctor is the "intestinal biopsy" to see if the vilia are worn down. This only can detect Celiac only when the damage has already been done. As Dr. Osborne mentioned in the previous video, it is not an accurate test. If you sample a small region and find no damage, that does not mean there is no damage in other regions of the small intestine. Furthermore, an individual can be gluten sensitive and be affected in other parts of the body besides the small intestines.

A positive intestinal biopsy is positive only when there is already damage in the intestinal villi detected. But one can be at an earlier stage where this has not happened yet, during which time gluten is still affecting health negatively in other ways. In her talk at Hawthorn University webinar, Marjie Andrejciw say that a saliva or stool test may catch the disease in it earlier stage than in a blood test.

Genetic testing might be considered. Not having a certain gene combination can rule out the disease. Persons with Celiac will have either the HLA DQ2 and/or the DQ8 gene. While the DQ1 and DQ3 genes are more often associated with gluten intolerance.

These genes are quite common. The book Why Do I Still Have Thyroid Symptoms? When My Lab Tests are Normal says ...

"All combined, it's estimated 43 percent of Americans are genetically predisposed to celiac disease, and 81 percent are predisposed to gluten intolerance". [page 31]

But having those genes does not mean that one will get celiac disease. It just means that one is genetically possible for being gluten sensitive or having celiac.

Gluten Sensitivity Versus Full-Blown Celiac

Dr. Mark Hyman writes ...

"you don't have to have full-blown celiac disease with a positive intestinal biopsy (which is what conventional thinking tells us) to have serious health problems and complications--even death--from eating gluten."[3]

He talks about the problem of gluten in the video on the right and mentions that 99% of the people who have problems with gluten may not know it because they attribute their symptoms to something else.

The book Digestive Wellness writes ...

"In the mouse that was exposed [to gluten], there was a buildup of intraepithelial lymphocytes (IELs) at the inside of the gut lumen. IELs are white blood cells that immediately release cytokines to get rid of molecules that don't belong there ... Dr. Fasano states that this happens in all of us when we eat gluten-containing grains." [page 273]

Nora Gedgaudas presentation slides at the Ancestral Health Symposium also mentions that It is estimated that only 1% of gluten sensitivity or celiac disease is ever diagnosed.

On HuffingtonPost, Dr. Mark Hyman says that ...

"people can be gluten-sensitive without having celiac disease or gluten antibodies and still have inflammation and many other symptoms."

Gluten Intolerance and Celiac

The reason it is important to know if you have Celiac disease is that if you test positive for it, then you must not eat gluten. The earlier you know and the earlier you stop eating gluten, the better the outcome.

Gluten is a protein composite that appears in foods processed from wheat, barley, and rye. Durum, semonlia, spelt, kamut, einkorn, and faro are forms of wheat and need to be avoided. For example, typical bread and pasta contains gluten. Some packaged food will say near the ingredients label whether it contains gluten. But just because it does not say that it contain gluten, you can not automatically assume that it does not.

Others say that one should avoid all grains completely just to be safe. Remember that cross reactivity means that some individuals can react to other grains as if they contained gluten. Casein is a common protein in dairy that can have this cross reactivity. Hence some may elect to do a gluten-free, casein-free diet.

People with Celiac disease will have this life-long diet restriction. There is no cure for Celiac disease. But usually they do not need medication and can lead long and healthy lives as long as they do not ingest gluten -- not even a drop.

It is not enough to be "mostly" gluten free. Your body can detect even a drop and can still trigger an immune response. Nora Gedgaudas presentation slides at the Ancestral Health Symposium writes more strongly ...

"ONLY total and permanent abstinence from gluten can lead to restored health in a person that is gluten sensitive"[4]

Celiac disease is not a "food allergy". Food allergy is something that can come and go. Celiac is permanent once it occurs. However, it is possible for a person to not have clinical Celiac disease but still be sensitive to gluten.

After eliminating gluten, one then must take protocol to heal the damaged gut.

What Causes Celiac Disease?

Celiac disease or gluten sensitivity can occur anytime in life. Gluten intolerance is 4 times higher in 2000 than back in 1950s.[5]

Why does Celiac disease occur? No one really knows. Some anecdotal writings suggests that it may be triggered for the first time after severe emotional stress, surgery, and viral infection.

A possible contributing factor to the rise of gluten intolerance may be due to genetically modified foods.[5] In addition, the wheat (and therefore bread) in the United States have been hybridized to have even higher amounts of gluten in than in the past.[5]

Gedgaudas writes ...

"Changes made to American strains of wheat, giving them much higher gluten content, are likely a significant part of the problem. Increased genetic susceptibility due to a variety of causes is likely another. ... chronic stress issues, leading to cortisol-related breakdown of immune barriers ..."[7]

The Immune System Recovery Plan writes that ...

"It is entirely possible that impaired digestion and a leaky gut due to a lack of beneficial gut flora are the reasons some people develop gluten issues in the first place."

Prevalence and symptoms of Celiac Disease

In the United States, more than 2 million people have Celiac disease. It affects 1 in 133 people. Some say it is 1 in 100.[3] Many more have a milder form of gluten intolerance - perhaps 15% to as much as 30% of the population have problem with gluten and do not even know it.[1][3]

The symptoms for Celiac disease is diverse and ambiguous. It really should be diagnosed by a specialist in Celiac disease. The symptoms can be gastrointestinal symptoms that includes bloating, gas, flatulence, foul-smelling stool, irritable bowel, and abdominal pain. Constipation can be a symptom, but so can diarrhea. Loss of appetite or large appetite can both be symptoms. Celiac disease can cause nutrient deficiencies which can cause a whole range of other symptoms. Or there can be no outward symptoms at all. So now you see how difficult it is to diagnosis.

Gluten Intolerance

In addition, to those people with full-blown Celiac disease, there are a significant portion of the population that have a milder form of gluten sensitivity, or "non-celiac gluten sensitivity".

The book Why Do I Still Have Thyroid Symptoms? When My Lab Tests are Normal writes ...

"Celiac disease affect sup to one in 100 Americans, although only 1 in 8 are estimated to be aware of their condition, as symptoms are often silent. Gluten intolerance, however, affects about 35 percent of Amercians based on Fine's research, with that number jumping to more than 50 percent if they are at high risk or show symptoms." [page 29]

As much as 99% of the people with gluten sensitivity may not even know they have it. They attribute their symptoms and feelings of non-well-being to something else. We now know that one does not have to have Celiac disease or be tested positive with a biopsy to experience negative health effects from gluten.

Gluten sensitivity has been implicated in many diseases including most autoimmune diseases. Gluten have been linked to irritable bowel diseases, rheumatoid arthritis, osteoporosis, anemia, cancer, fatigue, anxiety, depression, schizophrenia, dementia, and even autism and many others.

The reason why gluten causes such wide ranging disease is because the gliadin in wheat gluten causes intestinal permeability (known as "leaky gut syndrome"). Having a leaky gut is the first step in an autoimmune disease. And many autoimmune diseases is associated with a leaky gut. When the gut is "leaky", partially digested food proteins, bacteria, and toxins can leak into the bloodstream. The body's immune system see these as foreign materials and initiates a systemic inflammation response. This causes chronic systemic inflammation throughout the body.

More About Celiac and Gluten

Dr. Mark Hyman's article "Gluten: What You Don't Know Might Kill You" says that to see if one is sensitive to gluten, one can try eliminating gluten completely (including any hidden gluten in many processed foods) for two to four weeks and then re-introducing it and see how one feels.[3]

Some people suggest that everyone is sensitivity to gluten to some extent. It is just a matter of degree. A characteristic of the paleolithic diet for example is to avoid wheat, legumes, and dairy. Legumes and dairy are other category of foods that some people have sensitivity to.

People who are sensitivity to gluten is often also sensitive to the casein protein in dairy due to cross-reactivity. So if you have Celiac Disease, you may want to also cut out dairy or get tested to see if you are intolerance to it.

Gluten and Intestinal Permeability

Paul Jaminet also wrote about wheat and its role in causing leaky gut and autoimmune diseases. He calls wheat the most toxic food.

Mat Lalonde spoke at a Chris Kresser podcast saying that ...

"there are peptides derived from the digestion of gliadin, which is a part of gluten, that increase intestinal permeability. And that increase in intestinal permeability can lead to a wide, a very wide variety of problems."

This is known as a "leaky gut" which can then lead to other food intolerances. Because foreign or partially digested particles are leaking from the intestines to the bloodstream when it shouldn't be, this triggers an immune response and may even eventually lead to autoimmune diseases -- and of course, celiac disease being one.

A "leaky gut" often would mean also a "leaky blood-brain barrier" and hence mental health can be affected. Nora Gedgaudas talk at the Ancestral Health Symposium mentions that gluten sensitivity can affect mental health and is linked to depression, anxiety, ADHD, etc.[2]

Chances of developing an autoimmune condition goes up from the average 3.5% to 34% if one is diagnosed with Celiac after the age of 20.[5]

To learn more about how gluten is associated with autoimmune diseases, watch Dr. Thomas O'Bryan's lecture. His website has a page where you can find Certified Gluten Practitioners.

Why Don't They Just Call it Wheat Sauce?

There are some soy sauce whose first three ingredients are: water, wheat, soybeans. Since ingredients are listed with the most abundant first, that means that there is more wheat that soybeans in the soy sauce. That's is crazy. Why don't they just call it wheat sauce, instead.

Gluten in Products

If you have Celiac Disease, you really have to study which products have gluten and which do not. Watch the YouTube video of a Hawthorn University webinar on the right, Marjie Andrejciw presents very useful tips and information of people with gluten sensitivity. She herself is very sensitive to gluten. She explains hidden gluten and cross contamination. It may surprise you that shampoo, cosmetic, lipstick, hairspray, stamps and envelope glue may contain gluten.

Sometimes it is confusing. For example, soy sauce, teriyaki sauces, corn products, corn starch, and many dressings and sauces contains gluten. But buckwheat and glutenous rice does not. Most grains (such as wheat, barley, rye, spelt, kamat, couscous) contain gluten. But rice and quinoa (technically a seed) in its raw form does not.

Note that although quinoa, corn, millet, rice, and buckwheat may sometimes be called gluten-free by some. Others, in the new school of thought, believes that all grains contain some form of gluten -- some to a more greater extent than others. Many who have a gluten sensitivity will elect to eliminate all grains -- including corn, oats, quinoa, buckwheat, etc. And that might be a good idea.

Furthermore, it is common that grains have cross-contamination with gluten due to shared processing equipment, storage, or from winds blown from adjacent field with gluten-containing crops. Whether oats are gluten-free or not is debatable. Pure oats that are grown in dedicated fields without any cross contamination from other grains may be gluten-free if they are labeled as such. But many commercial oats are often contaminated with wheat during growing or processing. In addition, some individuals can have a reaction to oat protein known as avenin. And since we cannot tell who are susceptible, most authority would advise celiac patients to avoid oats.[6]

At the time of this writing in June 2012, the United States only requires labeling of food products that contains wheat. But there are many other package products that contain gluten which does not have wheat. Products with the words flour, rye, or barley, or other ingredient that is derived from flour would also contain gluten (unless it specifically says gluten-free).

Any ingredient listed as vegetable protein, hydrolyzed vegetable protein, seitan, food starch, artificial food coloring, food stabilizers, malt extract, dextrins, and food emulsifiers, etc may possibly contain gluten.

Even if a product does not contain gluten-based ingredients, it may have been manufactured in equipment along with other products that contain gluten. Sensitive people may react to this kind of cross-contamination.

The United States should do what Canada does and label products that contain gluten and not just products that contain wheat. It is also from Canada that established the standard that products labelled "gluten free" must not have more than 20 parts per million of gluten.

Peter Osborne explains gluten and leaky gut

Gluten Free May Not Be Enough

There are many forms of gluten and many individuals may react to other grains as if they contained gluten. That is why some people are going "grain-free". Grain is the seed of and reproductive element of a grass.

As Peter Osborne says in the video on the right, many of celiacs who go on a gluten-free diet don't get better. Some of them have reduced symptoms, but still have markers of gut inflammation. This is because they may be reacting to other so called "gluten-free" grains.

That is why processed food in boxes that are labelled "gluten-free" may still have gluten-like effects in some people.

Although quinoa is gluten-free. For some few individuals, quinoa can have the same effect as if it was gluten. Nora Gedgaudas is one as mentioned in this podcast.

This is known as cross-reactivity. Similar molecules such as casein can have the same effect as gluten in some individuals.

Dr. Karl Johnson writes that if one has gluten sensitivity, they should also be tested for cross reaction foods. Cyrex Labs is one that can tests for this. He also mentions the possible use of GlutenFlam(K-52) from Apex Energetics which are gluten and casein digestion enzymes (DPP IV enzymes) that may help with inadvertent consumption of trace amount of gluten.

Below is a YouTube with Ameer Rosic and a gluten panel consisting of Tom O'Bryan, Nora Gedgaudas, and Steve Wright. Some in the panel goes as far as to say that everyone should avoid gluten because gluten is not fully digested by anyone. Listen to the debate. They also talk about celiac and gluten sensitivity testing. The consensus is that they like the Cyrex Lab gluten sensitivity testing. If you don't have access to Cyrex, do an gluten-elimination diet and see.

  • [7] Primal Body, Primal Mind by Nora Gedgaudas


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    • BlissfulWriter profile imageAUTHOR


      5 years ago

      Thanks. If you like my article, click the follow button on my profile to get notified when new Hubs come out.

    • just helen profile image

      just helen 

      5 years ago from Dartmoor UK

      This is one of the best and most informative hubs I have ever read! I tested negative for celiac but am extremely intolerant of gluten. This is very helpful. Thank you so much for posting it!

    • BlissfulWriter profile imageAUTHOR


      5 years ago

      I'm glad there is growing awareness of gluten sensitivity. Some doctors and vets are still unfamiliar with the effects of gluten. Thanks for voting up.

    • mary615 profile image

      Mary Hyatt 

      5 years ago from Florida

      I am very interested in articles about gluten now that I've discovered my dog is sensitive to gluten. Even her vet prescribed diet had barley in it! I wrote a Hub about her problem with gluten if you would care to read it.

      Voted this Hub UP, etc.


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