Celiac.com 04/16/2019 (originally published 04/24/2008) - Genetic tests for celiac disease and gluten sensitivity are readily available. Testing can be performed on either blood and mouth swab samples. Tests can be done at home and mailed to the lab for analysis.

A good testing laboratory will provide an accurate prediction of celiac disease risk, and will also provide information about the statistical risk to your children, your likelihood of developing more severe celiac disease, whether one or both of your parents had the risk gene, and for some laboratories, you may determine your risk of gluten sensitivity without celiac disease.

DQ2 & DQ8 Not the Whole Story

About 95% of celiacs carry HLA-DQ2; while about 25% carry HLA-DQ8. If any part of the high risk gene patterns DQ2 and DQ8 is missing, then the likelihood of that person getting celiac disease is 99.9% AGAINST. 

Negative Genetic Test Only Part of the Story

However, "negative celiac genetic testing” is not sufficient for entirely ruling out celiac disease. To definitively declare negative celiac genetic tests requires the laboratory to test for the presence or absence of the entire HLA DQ genetic pattern, including both alpha and beta subunits.

The DQ genetic patterns DQ2 and DQ8 have two subunits, but many laboratories only test for the beta subunit. Few labs test for both. This DQ typing is complicated and difficult to understand even by physicians and scientists. I have written an updated detailed review that appears in the Spring 2008 issue of Scott-Free newsletter published by celiac.com.

No DQ2 & DQ8 Can Still Mean Gluten Problems

Data collected by Dr. Ken Fine of Enterolab supports the fact that the absence of DQ2 and DQ8 does not exclude the risk of being gluten intolerance or sensitive, though it is now looks likely that one or both of those genetic white blood cell patterns are required for celiac disease or celiac sprue to develop. 

However, there is a new study that reports that being negative for DQ2 and DQ8 does not completely exclude the possibility of celiac disease, especially in men. 

Previous studies have documented blood test negative celiac sprue, which is also more common in elderly men with long-standing severe disease. 

Since DQ2 or DQ8 is almost universally present where tissue transglutaminase and anti-endomysial antibodies are present it is not surprising that individuals without DQ2 or DQ8 with negative blood tests are being reported that meet criteria for celiac disease.

These new studies are also providing further information that the genetics of celiac is gender specific. If you are a man, your risk of celiac disease may be higher than a woman if you don't have the classic genetic patterns. Again, in this situation your blood tests may be negative. If you are a woman, the risk for Celiac disease is generally higher than a man, especially if you have received the at risk gene from your father instead of your mother.

Celiac disease is arguably the most common autoimmune disease. It is very common. It is easily treated. It affects 1/100 people worldwide. However, most people with celiac disease (~90%) are unaware, undiagnosed or misdiagnosed. 

Most adults finally diagnosed with celiac disease have suffered at least 10-11 years, and have seen 3 or more doctors. Genetic testing can be extremely helpful in determining your risk for celiac disease, potential severity, and risk for family members. Don't be one of those whose diagnosis is missed or needlessly delayed for over a decade. Get tested! Learn about the genetic tests for celiac disease and if necessary educate your doctor about this testing.

Important Facts About Celiac Disease:

Genetic Testing Can Determine Celiac Risk

Celiac genetic tests can be done on blood or a mouth swab sample but your doctor may be unaware of the tests, not know how to order them, or know how to interpret the results.

Diet Will Not Change Genetic Test Results

Genetic testing is not affected by diet. You can be eating gluten or on a gluten-free diet. Unlike blood tests for celiac disease antibodies, which require a patient to be eating gluten, genetic tests can be done whether or not the person being tested is eating wheat or gluten. 

Diagnostic Codes Can Help Secure Insurance Approval

Many insurance companies pay for celiac genetic testing. Most that pay require pre-authorization. The following diagnostic codes are helpful when requesting insurance coverage: 579.0 (celiac disease); V18.59 (family history of GI disease); and/or V84.89 (genetic susceptibility to disease).

Some Genetic Labs Perform Limited Tests

Many laboratories do not perform the all of the necessary components of the test to completely exclude the possible genetic risk of celiac disease and most don't test for or report the other gluten sensitive DQ patterns. Before you accept that have a negative test you need to know if your test included both the alpha and beta subunits of HLA DQ or did they just perform the beta typing.

Negative Results Can Still Mean Celiac in Rare Cases

In rare cases, some people, especially men, may have a negative genetic test and still have celiac disease. As with blood tests, men more commonly have negative genetic tests, especially older men with long-standing severe disease.

DQ Type Can Influence Celiac Risk and Severity

Both the DQ type, and number of copies you have, matter when determining not only your risk, but also the possible severity of celiac disease. Two copies of DQ2 carries more risk than one copy of DQ8 or only partial DQ2. Even a single copy of DQ2 alpha subunit ("half DQ2 positive") carries risk for celiac disease, but most of the commonly used laboratories for Celiac genetics do not test for or report the presence of this component of the celiac genes.

Negative DQ2 and DQ8 Can Still Mean Gluten Intolerance

The absence of at risk genes DQ2 and/or DQ8 does not exclude the possibility of being gluten intolerant or sensitive. You may respond to a gluten free diet, even if you don't have DQ2 or DQ8, or true autoimmune celiac disease.

No Prescription Needed for Genetic Celiac Testing

You can get genetic testing without a doctor's order and the tests can be done without having blood drawn or insurance authorization if you are willing to pay between $99-300 (www.enterolab.com).

Genetic Testing Labs for Celiac Disease

Laboratories in the U.S. that are known to offer complete alpha and beta subunit genetic testing include Kimball Genetics, Prometheus, and LabCorp. Bonfils, Quest and Enterolab only test for the beta subunit portions and therefore their test can miss part of a minor alpha subunit that carries a risk of celiac disease. A negative DQ2 and DQ8 report from these labs may not necessarily be truly negative for the risk of celiac disease.

Celiac Genetic Testing References and Resources:

• HLA-DQ and Susceptibility to Celiac Disease: Evidence for Gender Differences and Parent-of-Origin Effects. Megiorni F et al. Am Journal Gastroenterol. 2008;103:997-1003.
• Celiac Genetics. Dr. Scot Lewey. Scott-Free, Spring 2008.

Celiac.com 04/05/2019 (Originally published on 10/19/2009) - Gluten intolerance caused by celiac disease, or non-celiac gluten sensitivity, may affect virtually any part of the body. A culprit in multiple health disorders, gluten intolerance is a major driver of health care delivery and associated costs.  While this may seem to be an outrageous claim, a review of the many ways in which gluten intolerance can adversely affect the body will illustrate this point. So, let’s work our way down from head to toe.

Celiac Disease Can Cause Hair Loss

Normal, healthy hair is usually glossy and thick.  An autoimmune disorder known as alopecia areata results in abnormal loss of hair, either in patches, or totally, and is one of many autoimmune disorders associated with celiac disease. Malabsorption severe enough to cause malnutrition can also result in thin, sparse, fragile hair. One of the outward signs of hypothyroidism is thinning hair and a loss of the outer third of the eyebrow; hypothyroidism is strongly associated with celiac disease.

How Celiac Disease Affects the Brain

Now let’s look at the brain.  There are, unfortunately, a large number of neurological disorders associated with gluten intolerance and celiac disease, including narcolepsy, depression, ADD/ADHD, Autism Spectrum Disorders, and schizophrenia. There are also movement and balance disorders associated with gluten intolerance, including ataxia - the inability to coordinate movements and balance (gluten ataxia, celiac ataxia, some cases of sporadic idiopathic ataxia). In some cases, when symptoms are severe, this disorder mimics other disorders such as Parkinson’s, Normal Pressure Hydrocephalus, and even Alzheimer’s disease.

Headaches Common in Celiac Disease

Headaches are a very common symptom of wheat allergy, as well as gluten intolerance.  Migraines are common in those with celiac disease and gluten intolerance, as are sinus headaches.  These symptoms often decline dramatically after excluding gluten grains from the diet. Sinus problems are common in those with celiac disease, gluten intolerance, and sensitivity to dairy products as well, and are often reversible by making dietary changes. Some people with celiac disease seem to have an altered, highly acute sense of smell – for unknown reasons.

Night Blindness from Vitamin A Deficiency

Night blindness associated with vitamin A deficiency is reversible when malabsorption is resolved and with the addition of a vitamin A supplement. Xeropthalmia, or chronic, often severe, dry eyes, is also related to severe vitamin A deficiency.  It is rare in developed countries, but can be found in some people with malnutrition due to celiac disease.

Canker Sores Common in Celiac Disease

Apthous stomatitis is the name for the mouth ulcers associated with food allergies and intolerances, and is strongly associated with celiac disease and gluten intolerance. Even people who do not have gluten sensitivity get these once in a while but in those with gluten intolerance they are more frequent and especially long-lasting.  

Dental Enamel Defects Can Indicate Celiac Disease

While they are usually identified in childhood, they can continue to cause problems throughout life, because they often lead to more frequent dental cavities.  Halitosis, or bad breath, is a reflection of our internal environment and gastrointestinal health, and is often present in those with untreated celiac disease, gluten sensitivity, or gut dysbiosis – an upset in the balance of our internal microorganisms caused by poor diet and other factors. And, one of the autoimmune disorders strongly associated with celiac disease, and one of the most prevalent is Sjogren’s syndrome, which impairs the normal production of body fluids like tears, saliva, and vaginal secretions.

Strong Link Between Celiac Disease & Eosinophilic Esophagitis

Following the path our food takes to the stomach, we can look for effects in the esophagus too.  Eosinophilic esophagitis is a rarely encountered inflammation in the tissue of the esophagus which makes swallowing painful and difficult and can result in bleeding ulcerations.  When doctors do see it, they sometimes test for celiac disease, since there is a strong correlation.  Fortunately, in cases where this condition is caused by gluten intolerance, this painful chronic disorder clears up on a gluten free diet, too.

GI Complaints Common in Celiac Patients

Now we’re getting to the area most people associate with gluten intolerance – the gastro-intestinal system. In the past, celiac disease was usually described as causing gas, diarrhea, bloating, discomfort, cramping, and malabsorption.  But as you’ve already seen above, there is a whole lot more to this disorder, and we’re only halfway to the toes.

Celiac Can Be Misdiagnosed as IBS

In addition to the above symptoms, the body’s reaction to gluten can cause inflammation anywhere, but a common location is in the illeo-cecal junction and the cecum. This can sometimes be confused with appendicitis, or ovarian pain or an ovarian cyst in women experiencing right-sided lower abdominal discomfort.  Irritable bowel syndrome is suspected to affect at least 10-15% of adults (estimates vary). It is differentiated from IBD, or inflammatory bowel disorders (which include Crohn’s disease and ulcerative colitis). But, taken together, there are an awful lot of people out there with uncomfortable gut issues.  One fact to consider is that many of those with celiac disease were previously, and wrongly, misdiagnosed with IBS before discovering they actually had celiac disease.

Kidney & Urinary Problems

Let’s take a look at the urological system.  Even though gluten from the food we eat isn’t directly processed here, can it still be affected?  The answer is yes. Kidney problems in association with celiac disease are well documented, including oxalate kidney stones. Bladder problems are increasingly shown to be responsive to a gluten-free diet. This is kind of my specialty and I would estimate that about a quarter of those with interstitial cystitis, and many people with recurrent urinary tract infections, have a sensitivity to gluten. Even prostate inflammation in some men can be triggered by eating gluten grains.

Adrenal Fatigue in Celiac Disease

Sitting just atop the kidneys are our adrenal glands.  They have a difficult job, helping to direct our stress response system, our immune system, and our hormone output, and controlling inflammation in the body. Every time we experience a reaction to gluten, and our adrenals respond by sending out a surge of cortisol to help control inflammation, we are depleting our adrenal reserve.  When this happens chronically, over time, our adrenal system cannot keep up and becomes fatigued.  Symptoms of adrenal fatigue have far-reaching consequences throughout the body, including, of course, feeling fatigued and run down. But, adrenal fatigue can also affect our hormones, our blood sugar regulation, our mental acuity, our temperature regulation, and our ability to cope with food allergies, environmental allergies, and infections.

Celiac Disease Common in Hepatitis Patients

Can the liver, the body’s largest internal organ, be affected by gluten intolerance too?  One example is autoimmune hepatitis, in which can be untreated celiac disease can be found in large numbers. Early screening testing for celiac disease is now strongly recommended for patients diagnosed with autoimmune hepatitis.

Gluten Intolerance, Pancreas and Blood Sugar

The pancreas, which is key in blood sugar regulation, is highly affected by gluten intolerance.  Autoimmune disease triggers the development of Type I Diabetes, and is becoming more closely associated with celiac disease.  Testing for celiac disease is now becoming a routine part of examination when a child develops Type I Diabetes, and now that physicians are looking for celiac disease in juvenile diabetes, they’re finding it with greater frequency. Blood sugar regulation problems are also associated with non-diabetic hypoglycemia in those with gluten intolerance, and appear to resolve with a low-glycemic gluten free diet.

Celiac Disease Can Affects Limbs and Extremities

So, we’ve covered most of the body’s major internal systems. Now, let’s look at the extremities, our upper and lower limbs, where gluten-associated problems are also found. Ehlers-Danlos Syndrome, a collagen disorder resulting in shoulder, elbow, and wrist joints that dislocate easily (and other characteristics) is a genetic disorder that may also be associated with celiac disease.  I had mild symptoms of this disorder as a child, but never knew it had a name until I ran across it recently.  With a child who has this disorder, a simple game of swinging a child by the arms, or swinging a child between two sets of their parent’s arms, can result in a trip to the emergency to put their joints back into proper alignment. This is not to say that a reaction to gluten causes this genetic disorder, but that if you have a personal or family history of Ehlers-Danlos Syndrome, and symptoms that may be related to celiac disease, you should consider being tested.

Arthritis Associated with Celiac Disease

Rheumatoid arthritis is another of the autoimmune disorders associated with celiac disease, and often affects the fingers with crippling joint deformation. Other joints in the body can also be affected. Scleroderma is another terribly disfiguring and sometimes fatal autoimmune disorder affecting every part of the body. It is often first identified in the extremities, particularly the fingers. In scleroderma, normal tissue loses it’s flexibility as the body’s autoimmune response produces inflammation and an overproduction of collagen.  Collagen is the tough fibrous protein that helps form connective tissues including tendons, bones, and ligaments. Excess collagen is deposited in the skin and body organs, eventually causing loss of function.  Scleroderma can be associated with celiac disease.

Skin Conditions Common in Celiac Patients

The arms and legs are also common spots for yet another autoimmune disorder, psoriasis, to develop.  Some patients with psoriasis are responsive to a gluten-free diet, but unfortunately, not everyone. Another skin condition that often shows up on the arms is dermatitis herpetiformis (DH), although this itchy blistering skin rash can occur in other places as well.  Common sites are the backs of the elbows and the backs of the knees, or on the lower legs.

Peripheral Neuropathy Common in Celiac Disease

Peripheral neuropathy is a disorder that results in numbness, tingling, and sometimes severe nerve pain in the extremities.  Finger, hands, toes, feet, and lower legs may all be affected. Although usually associated with diabetes, peripheral neuropathy shows up fairly frequently in those with celiac disease, and is fortunately reversible on a gluten free diet supplemented by B-vitamins and some specific amino acids.  Peripheral neuropathy is usually associated with older people, but some of the cases I’ve observed recently have been in very young children who had severe malabsorption issues.  Fortunately they healed quickly and their neuropathy symptoms resolved completely.

Malabsorption and Vitamin Deficiency

There a few last symptoms related to malabsorption that tend to show up in those with celiac disease or gluten intolerance.  Easy bruising and bleeding, either due to a deficiency of Vitamin K, or to an autoimmune platelet disorder, is one. Rickets, or osteomalacia – a softening of the bones in the legs related to vitamin D deficiency – is another. As we said before, inflammation goes along with celiac disease and gluten intolerance, and a common site for inflammation is the lower extremities.  Sometimes this can be profound, and trigger doctors to think heart disease, but it’s often unresponsive to Lasix and other diuretics. This condition, too, may also clear up on a gluten-free diet.

As for me, I’ll be happy to be gluten-free, from head to toe.

Celiac.com 03/29/2019 (Originally published 06/26/2007) - Celiac disease is one of the most common chronic health disorders in western countries. It is also one of the most under-diagnosed. Up until the late 90s, medical schools taught that celiac disease was rare, and only affected about 1 in 2,500 people. They also taught that celiac disease mainly affected children and young people. 

Recent studies and advances in diagnosis show that at least 3 million Americans, or about 1 in 133 people have celiac disease, but less than 1 in 5 of those are ever diagnosed. 

Also, more and more patients are being diagnosed as adults. Moreover, more and more patients are being diagnosed with few symptoms, atypical symptoms, or no symptoms at all. Also, more and more patients are being diagnosed as adults. Moreover, more and more patients are being diagnosed with few symptoms, atypical symptoms, or no symptoms at all.
 

Celiac Disease is More Common than Crohn’s or Multiple Sclerosis (MS)

The National Institutes of Health shows the prevalence of celiac disease to other well-known conditions as follows:

• Celiac Disease affects at least 3.2 million Americans
• Epilepsy affects at least 3.4 million Americans
• Crohn’s Disease affects 1.6 million Americans
• Ulcerative Colitis affects just under 1 million Americans
• Multiple Sclerosis affects nearly 1 million Americans
• Cystic Fibrosis affects 30,000 Americans

Black, Hispanic and Asian Populations Affected

While celiac disease mostly affects people of European, especially Northern European, descent, recent studies show that it also affects portions of the Hispanic, Black and Asian populations as well. Celiac disease presents a broad range of symptoms, from mild weakness and bone pain, to chronic diarrhea, abdominal bloating, and progressive weight loss. In most cases, treatment with a gluten-free diet leads to a full recovery from celiac disease. It is therefore imperative that the disease is quickly and properly diagnosed so it can be treated as soon as possible.

High Cancer Risk for Non-Gluten-Free Patients

If people with the disease continue to eat gluten, studies show that their risk of gastrointestinal cancer is 40 to 100 times that of the normal population. In addition to increased cancer risk, untreated celiac disease is associated with osteoporosis, and a two-fold increase in the risk of fractures, including first-time hip fractures. Moreover, an unusually high percentage of people with the disease suffer from the following related conditions (% in parenthesis):

• Anemia (3-6%)
• Arthritis (20%)
• Ataxia (40%)
• Cancer—Non-Hodgkins Lymphoma (39%)
• Cows Milk Intolerance (24%)
• Dermatitis (5%)
• Diabetes-Type 1 (12%)
• Irritable Bowel Syndrome (20%)
• Liver Disease (42%)
• Migraine Headaches (4%)
• Nerve Disease and/or Peripheral Neuropathy (51%)
• Obesity (30-40%)
• Osteoporosis (4.5%)
• Osteomalacia/Low Bone Density (70%)
• Pancreatic & Thyroid Disorders (5-14%)

Screening Common for Related Conditions

In fact, untreated celiac disease can actually cause or worsen some of these conditions, and medical guidelines now recommend celiac screening for all people with these conditions.

The vast majority of people see doctors who have been in practice for more than ten years, for whom celiac disease is still seen as a rare condition, and often not considered when handling patient complaints. Make sure your doctor is up to date on celiac disease.

Seniors Suffer More Celiac-Related Issues

Seniors are also more likely than the general population to suffer from conditions associated (Arthritis, Diabetes, Liver Disease, Osteoporosis, etc). Without awareness and screening, they are at greater risk for developing disorders resulting from celiac disease--many of which are avoidable with diagnosis and treatment. Awareness of celiac disease and related issues offers seniors and easy way to improve their health and well-being.

Celiac.com 03/05/2019 - Doctors commonly suggest celiac screening for anyone with a family history of celiac disease, or of disorders such as thyroid disease, anemia of unknown cause, type I diabetes or other immune disorders or Downs syndrome. Otherwise, patients are generally screened on a case by case basis according to individual symptoms.

Blood Testing - Antibodies Point to Celiac Disease

Screening for celiac disease usually begins with a blood test.

People with celiac disease have abnormally high levels of associated antibodies, including one or more of the following: anti-gliadin, anti-endomysium and anti-tissue transglutaminase, and damage to the villi (shortening and villous flattening) in the lamina propria and crypt regions of their intestines when they eat specific food-grain antigens (toxic amino acid sequences) that are found in wheat, rye, and barley. Antibodies are the specialized proteins the immune system uses to break down and eliminate foreign substances from the body. In people with celiac disease, the immune system treats gluten as a foreign invader and produces elevated levels of antibodies to get rid of it, causing symptoms and associated discomfort.

Testing for Celiac Antibodies

A blood test, such as anti-tissue transglutaminase and anti-endomysial antibodies, can detect abnormally high antibody levels, and is often used in the initial detection of celiac in people who are most likely to have the disease, and for those who may need further evaluation. Since the immune system of a person with celiac treats gluten as a foreign substance and increases the number of antibodies, elevated levels of these antibodies are a sign of celiac disease.

Genetic Testing

Celiac disease is influenced, but not determined, by genetics. That means that susceptibility to celiac disease can be inherited, but the disease itself is not inherited. At least two genes, HLA-DQ2, HLA-DQ8, play a major role in celiac disease susceptibility. About 95% of people with celiac disease have the HLA-DQ2 gene and most of the remaining 5% have the HLA-DQ8 gene. A number of genetic testing services can tell you whether you have these genes. Some will test specifically for celiac genetics, others will test for celiac genetics as part of a general test. Genetic testing can help to indicate whether you might have a greater risk for celiac disease.

Clinical Celiac Testing

Typically, initial blood screening for celiac disease is done at a doctor’s office or at a clinic. Typically, such tests are ordered by a physician for patients who show symptoms, and/or a family history of celiac disease. If the results are positive, doctors will usually seek to confirm the diagnosis with a biopsy.

Home Test Kits for Celiac Disease

In the last several years, a number of accurate, reliable home test kits for celiac disease have come onto the market. Some of these kits deliver quick results in the home, while others require the consumer to mail the sample to a lab and receive the results later. Some mail-in kits use the same tests and labs as clinics do.
 
Home test kits can offer convenience, confidentiality, and savings to consumers. They can also provide confidence for people, with or without symptoms, who believe they may have celiac disease. It’s not a good idea to use home test kits to diagnose celiac disease. As with clinical test results, positive results from home test kits should be confirmed by a doctor, and proper diagnosis and care should be initiated. 

Confirming Celiac Diagnosis

To confirm a diagnosis of celiac disease, your doctor will likely want to do a biopsy. That’s where they visually examine a the small intestine to check for celiac-related damage. To do this, your doctor inserts an endoscope, a thin flexible tube, through your mouth, esophagus and stomach into your small intestine. The doctor then takes a sample of intestinal tissue to look for damage to the villi, the tiny, hair-like projections in the walls of the small intestine that absorb vitamins, minerals and other nutrients. If the biopsy shows celiac-associated damage, the doctor will confirm the diagnosis and encourage you to adopt a gluten-free diet.

Celiac.com 07/04/2018 - For the vast majority of people, gluten is nothing to worry about. However, for people with celiac disease, gluten triggers an immune reaction that can be uncomfortable and lead to damage of the intestinal lining, and, left untreated, other conditions, including certain types of deadly cancers. Actually, the real offender is a protein in gluten called gliadin. It's the gliadin that triggers the immune reaction in people with celiac disease. For our purposes today, I will talk about gluten, even though it's really gliadin that's the culprit. Still, avoiding gliadin means avoiding gluten, so let's just keep it simple, if a bit unscientific, for now.

There are some people who are sensitive to gluten, but who don’t have celiac disease, a condition know as Non-Celiac Gluten Sensitivity (NCGS). When people with NCGS eat gluten, they often experience symptoms similar to those with celiac disease, yet they lack the same antibodies to gluten, as well as the intestinal damage seen in celiac disease.

People with celiac disease and gluten sensitivity need to follow a gluten-free diet that excludes all products containing wheat, barley and rye ingredients. These people can still enjoy a healthy diet filled with fruits, vegetables, meats, poultry, fish, beans, legumes and most dairy products. Many delicious foods are naturally gluten-free, and safe for people with celiac disease.

That said, gluten is found in a wide variety of foods, even those you wouldn’t expect, such as soy sauce and even some french fries. Foods containing wheat, barley or rye contain gluten, but the protein can also be hidden in many foods as an additive, especially processed foods. Gluten can also sometimes be found in certain medications, personal hygiene products and more.

For people with celiac disease, even tiny amounts of gluten can cause damage to the small intestine and prevent nutrients from being absorbed into the bloodstream. The safest bet is to purchase naturally gluten-free grains, flours and starches labeled gluten-free and, when possible, certified gluten-free by a third party.

For a more complete list, see Celiac.com’s gluten-free Safe Foods List  and the non-gluten free Unsafe Foods List.

What Foods and Products Contain Gluten?
Gluten is found in any products with ingredients derived from wheat, barley and rye. This includes:

1) Wheat products (Triticum), including: All species of wheat contain gluten, including durum, semolina, spelt, kamut, einkorn, faro and triticale, which is a hybrid of wheat and rye.

2) Barley Products (Hordeum vulgare)

3) Rye Products (Secale)

4) Any bakery item, beer, breads, candy (not all), cereal, flour, pastas, non-dairy milk (not all), sauces (not all), soups (not all), or other product made with wheat, rye, barley, including the following ingredients:

• Abyssinian Hard (Wheat triticum durum)
• Alcohol (Spirits - Specific Types)
• Atta Flour
• Barley Grass (can contain seeds)
• Barley Hordeum vulgare
• Barley Malt
• Beer (most contain barley or wheat)
• Bleached Flour
• Bran
• Bread Flour
• Brewer's Yeast
• Brown Flour
• Bulgur (Bulgar Wheat/Nuts)
• Bulgur Wheat
• Cereal Binding
• Chilton
• Club Wheat (Triticum aestivum subspecies compactum)
• Common Wheat (Triticum aestivum)
• Cookie Crumbs
• Cookie Dough
• Cookie Dough Pieces
• Couscous
• Criped Rice
• Dinkle (Spelt)
• Disodium Wheatgermamido Peg-2 Sulfosuccinate
• Durum wheat (Triticum durum)
• Edible Coatings
• Edible Films
• Edible Starch
• Einkorn (Triticum monococcum)
• Emmer (Triticum dicoccon)
• Enriched Bleached Flour
• Enriched Bleached Wheat Flour
• Enriched Flour
• Farik
• Farina
• Farina Graham
• Farro
• Filler
• Flour (normally this is wheat)
• Freekeh
• Frikeh
• Fu (dried wheat gluten)
• Germ
• Graham Flour
• Granary Flour
• Groats (barley, wheat)
• Hard Wheat
• Heeng
• Hing
• Hordeum Vulgare Extract
• Hydroxypropyltrimonium Hydrolyzed Wheat Protein
• Kamut (Pasta wheat)
• Kecap Manis (Soy Sauce)
• Ketjap Manis (Soy Sauce)
• Kluski Pasta
• Maida (Indian wheat flour)
• Malt
• Malted Barley Flour
• Malted Milk
• Malt Extract
• Malt Syrup
• Malt Flavoring
• Malt Vinegar
• Macha Wheat (Triticum aestivum)
• Matza
• Matzah
• Matzo
• Matzo Semolina
• Meripro 711
• Mir
• Nishasta
• Oriental Wheat (Triticum turanicum)
• Orzo Pasta
• Pasta
• Pearl Barley
• Persian Wheat (Triticum carthlicum)
• Perungayam
• Poulard Wheat (Triticum turgidum)
• Polish Wheat (Triticum polonicum)
• Rice Malt (if barley or Koji are used)
• Roux
• Rusk
• Rye
• Seitan
• Semolina
• Semolina Triticum
• Shot Wheat (Triticum aestivum)
• Small Spelt
• Spirits (Specific Types)
• Spelt (Triticum spelta)
• Sprouted Wheat or Barley
• Stearyldimoniumhydroxypropyl Hydrolyzed Wheat Protein
• Strong Flour
• Suet in Packets
• Tabbouleh
• Tabouli
• Teriyaki Sauce
• Timopheevi Wheat (Triticum timopheevii)
• Triticale X triticosecale
• Triticum Vulgare (Wheat) Flour Lipids
• Triticum Vulgare (Wheat) Germ Extract
• Triticum Vulgare (Wheat) Germ Oil
• Udon (wheat noodles)
• Unbleached Flour
• Vavilovi Wheat (Triticum aestivum)
• Vital Wheat Gluten
• Wheat, Abyssinian Hard triticum durum
• Wheat Amino Acids
• Wheat Bran Extract
• Wheat, Bulgur
• Wheat Durum Triticum
• Wheat Germ Extract
• Wheat Germ Glycerides
• Wheat Germ Oil
• Wheat Germamidopropyldimonium Hydroxypropyl Hydrolyzed Wheat Protein
• Wheat Grass (can contain seeds)
• Wheat Nuts
• Wheat Protein
• Wheat Triticum aestivum
• Wheat Triticum Monococcum
• Wheat (Triticum Vulgare) Bran Extract
• Whole-Meal Flour
• Wild Einkorn (Triticum boeotictim)
• Wild Emmer (Triticum dicoccoides)
   

Celiac.com 05/02/2018 - Celiac disease is an autoimmune disorder, not an allergy. Celiac disease affects abut 1 in 100 people, and requires professional diagnosis and treatment with a gluten-free diet. There is a good deal of confusion and inaccurate information about celiac disease and a gluten-free diet. Here are some important things to know about celiac disease:

1) Celiac Disease Doesn’t Always Have Obvious Symptoms
People with celiac disease may have few or no symptoms. In fact, these days, most people diagnosed with celiac disease, report few or no symptoms.

Classic gastrointestinal symptoms include bloating, diarrhea, gas, constipation, and gut pain after consuming wheat, barley or rye. Other prominent symptoms can include fatigue, headache, poor weight gain, and depression. 

Less classic, but still common celiac symptoms include one or more of the following: anemia, anxiety, skin rashes, infertility, irritability, joint pain, pale mouth sores, thin bones, tingling and/or numbness in hands and feet.

2) No Symptoms Doesn't Mean No Damage
The level of celiac-related symptoms or complaints a person has does not equate to the level of gut damage. Few or no symptoms does not mean little or no gut damage. People can have severe celiac symptoms, yet relatively light gut damage on biopsy, or conversely, they can have light symptoms and still have serious gut damage on biopsy.

3) A Simple Antibody Test Can Point the Way
If you suspect celiac disease, be sure to talk with your doctor. A simple antibody test or two is usually sufficient to rule celiac disease in or out. If the test is positive, then a doctor will likely recommend a biopsy for confirmation. Recent studies show that a combination of two antibody tests may be better than biopsy. Usually, patients need to be eating wheat when they are tested for celiac disease, but that is changing. There are also some promising new approaches to blood testing for celiac disease.

4) Early Diagnosis is Key
The longer you go without treatment, the higher the risk of gut damage, and the greater the likelihood of developing associated conditions. Early diagnosis is especially important in the elderly, as they have a greater risk of developing associated conditions and complications from untreated celiac disease. Still diagnosing celiac disease can be tricky and can take time, partly because the symptoms can be vague, seem unrelated, and can mimic other conditions.

5) No Cure
Currently, there is no cure for celiac disease. Several companies are working to develop a vaccine, or other immune therapy for celiac disease, but until we see a major scientific breakthrough, there is no cure for celiac disease. 

6) Gluten-Free Diet is Mandatory
A gluten-free diet is the only treatment for celiac disease. For people with celiac disease, a gluten-free diet is mandatory, not optional. If people with celiac disease consume wheat, rye or barley proteins they risk causing serious damage to their health, including gut damage and potential cancer, especially in the long term.

7) Full Gut Healing Can Take Time
Recent studies show that most people with celiac disease begin to see gut healing in the first year or year and a half. The vast majority of celiacs on a gluten-free diet heal within two to three years. Gut healing usually corresponds to healing in other affected parts of the body, such as improvements in bone microarchitecture, neuropathy, and other areas of celiac-associated damage.

8) Gluten Sensitivity Can Increase
The longer you go without gluten, the more sensitive you may become to accidental gluten ingestion. It’s not uncommon for people with celiac disease to see their sensitivity to gluten increase in the weeks and even years after they give up gluten. That can mean that accidental gluten ingestion can bring on symptoms that are more severe than their original complaints. For many people, this sensitivity may slowly taper off and decrease over time. For others, sensitivity remains high and requires extra vigilance about to make sure food is gluten-free.

Remember, increased gluten sensitivity does not equal increased gut damage. For some, a fully healed gut may be more sensitive to gluten than a damaged one, and vice versa. 

Among people on a gluten-free diet due to celiac disease, sensitivity can vary.

9) Non-Celiac Gluten Sensitivity (NCGS) is a Thing
You can be sensitive to gluten and not have celiac disease. Researchers have recently confirmed a condition called non-gluten sensitivity. People with this condition experience celiac-like symptoms when they consume gluten. However, they typically do not test positive for antibodies to gliadin, and they typically have a clean biopsy, so no gut damage. Some studies have cast doubt on the existence of non-gluten-celiac sensitivity. Other studies have shown that many people with NCGS react to gluten. Still other studies show that Fructan has emerged as one possible culprit. 

10) You Can Still Live a Healthy Life and Eat Delicious Food
Having celiac disease means making some important adjustments to your diet, but it’s still possible to live a healthy life and eat tasty food. Read more about the best gluten-free breads, burgers, pizzas, and all your favorite gluten-free treats.

Here is a list of SAFE and UNSAFE foods for people with celiac disease. 

Here is a list of easy, list of easy, delicious gluten-free recipes.

Here is a list of great gluten-free sandwich breads.

Here is a list of great gluten-free Mexican Fast Food Chains.

Here's a recipe for a delicious gluten-free No-Bake Cheesecake.

Knowledge is Power
Use Celiac.com, and the Celiac.com Forums to get important information and to share your experience with others like you. Other great celiac disease resources include:

• The Mayo Clinic
• Celiac Disease Center at Columbia University
• Gluten Intolerance Group of North America

WHAT IS CELIAC DISEASE?
Celiac disease is an autoimmune condition that affects around 1.4% of the population (91.2 million people worldwide, and 3.9 million in the U.S.A.). People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.

Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.

Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 

CLASSIC CELIAC DISEASE SYMPTOMS
Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.

LESS OBVIOUS SYMPTOMS
Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.

NO SYMPTOMS
Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

CELIAC DISEASE VS. GLUTEN INTOLERANCE
Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 

CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

There are four main differences between celiac disease and non-celiac gluten sensitivity:

1. No Hereditary Link in NCGS
   Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary.
2. No Connection with Celiac-related Disorders
   Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies.
3. No Immunological or Serological Markers
   People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS.
4. Absence of Celiac Disease or Wheat Allergy
   Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption.

WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 

Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  

Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.

• Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome?
• Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten
• Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity
• Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise

CELIAC DISEASE DIAGNOSIS
Diagnosis of celiac disease can be difficult. 

Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 

But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 

• Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult. 
• Celiac disease is commonly misdiagnosed by doctors.
• Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com

Currently, testing and biopsy still form the cornerstone of celiac diagnosis.

TESTING
There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.

Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

BIOPSY
Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

WHY A GLUTEN-FREE DIET?
Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 

A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.

For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.

WHAT ABOUT ENZYMES, VACCINES, ETC.?
There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.

There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

ASSOCIATED DISEASES
The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:

• Type 1 Diabetes Mellitus: 2.4-16.4%
• Multiple Sclerosis (MS): 11%
• Hashimoto’s thyroiditis: 4-6%
• Autoimmune hepatitis: 6-15%
• Addison disease: 6%
• Arthritis: 1.5-7.5%
• Sjögren’s syndrome: 2-15%
• Idiopathic dilated cardiomyopathy: 5.7%
• IgA Nephropathy (Berger’s Disease): 3.6%

Other celiac co-morditities include:

• Crohn’s Disease; Inflammatory Bowel Disease
• Chronic Pancreatitis
• Down Syndrome
• Irritable Bowel Syndrome (IBS)
• Lupus
• Multiple Sclerosis
• Primary Biliary Cirrhosis
• Primary Sclerosing Cholangitis
• Psoriasis
• Rheumatoid Arthritis
• Scleroderma
• Turner Syndrome
• Ulcerative Colitis; Inflammatory Bowel Disease
• Williams Syndrome

Cancers:

• Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types)
• Small intestinal adenocarcinoma
• Esophageal carcinoma
• Papillary thyroid cancer
• Melanoma

CELIAC DISEASE REFERENCES:

• Global Prevalence of Celiac Disease: Systematic Review and Meta-analysis. Clinical Gastroenterology and Hepatology 2018;16:823–836
• Celiac Disease Center, Columbia University
• Gluten Intolerance Group
• National Institutes of Health
• U.S. National Library of Medicine
• Mayo Clinic
• University of Chicago Celiac Disease Center

Celiac.com 12/05/2017 - It's not uncommon for people with celiac disease to have other medical conditions, including liver disease, glossitis, pancreatitis, Down syndrome, and autism.

By the same token, people with one or more of these associated disorders can be at greater risk for having or developing celiac disease. Until recently, though researchers didn't have much good data on the numbers behind those risk levels. A new database study of more than 35 million people changes that.

The study found that, for example, people with autism have celiac disease at rates that are 20 times higher than those without autism. You read that right. People with autism are 20 times more likely to have celiac disease than people from the general population.

Reporting on his team's findings at the World Congress of Gastroenterology 2017, lead investigator Daniel Karb, MD, a second-year resident at University Hospitals Case Medical Center in Cleveland, says that doctors who treat autistic patients may want to keep an eye out for celiac-like symptoms. "If you have a patient who is autistic and they have all these unusual symptoms, you might want to screen them for celiac disease," said Karb.

Researchers have long known that people with celiac disease can present with unusual symptoms that fall outside the classic celiac symptoms of malabsorption, steatorrhea, malnutrition, abdominal pain, and cramping after eating, "but this is putting numbers to it," said Dr Karb.

For their study, Dr. Karb and his colleagues searched the Explorys database, which aggregates electronic health record data from 26 major integrated healthcare systems in the United States. Combing through the records of 35,854,260 people in the database from 2012 to 2017, they found 83,090 celiac disease diagnoses.

The investigators uncovered significant connections between celiac disease and 13 other autoimmune disorders, such as type 1 diabetes, Crohn's disease, and ulcerative colitis. In fact, the team found that, except for a condition called primary biliary cholangitis, "[e]very autoimmune disease [they] looked at is associated with celiac disease," Dr. Karb reported.

The study indicates that "there is a large undiagnosed burden of celiac disease," he explained. "And a lot of it is probably because of these atypical presentations."
As research continues, look for more connections between celiac disease and other inflammatory conditions to be more fully detailed.

For more on the World Congress of Gastroenterology 2017.

Source:

• Medscape.com

Celiac.com 08/28/2012 - What's In A Name and When Does Celiac Predisposition Become A Disease?

No doubt that global awareness about celiac disease and its possible involvement in a myriad of other (mostly autoimmune response related) conditions is growing. Growing, unfortunately, is confusion about terminologies and medical implications.

The “Common” Understanding

"Celiac disease" has become a generic blanket term not unlike how "Kleenex" today signifies no more than a box of tissue paper of any brand. So, in the public mind, "celiac disease" today stands for everything connected to a reaction to gluten.[1]

Such an approach is highly imprecise and misses

1. the need for distinction between non-celiac and/or celiac gluten sensitivity and
2. the fact that a predisposition does not necessarily constitute disease.

The 2012 Internationally Accepted Definition

In an attempt to bring some clarity to the medical community, the world’s leading celiac minds earlier in 2012 met for an international convention in Oslo, Norway.[2]  During that convention, and after considering many of the most commonly used terms, they recognized

and called for a

Let us be clear: This terminology refers solely to the underlying toxic effect of gluten rather than the possibly resulting disorders that may be based on other, additional triggers as well.

Genotyping Tells Non-Celiac from Celiac Gluten Sensitivity

Along with ever mounting genotype-related research, detailed HLA-DQ2/DQ8 human leukocyte antigen genotyping[4] today allows us to distinguish between predispositions to non-celiac and/or celiac gluten sensitivity (NCCGS) predisposition.

Increasingly, research results link gluten issues to a considerable list of specific conditions and, therefore, allow for and promote a “natural” approach (i.e. gluten free diet and lifestyle) to resolve a complex panel of non-obvious signs and symptoms.

Accordingly, "Celiac" is not (yet) a disease but a metabolic predisposition, i.e. the body’s inability to digest certain grain proteins, prolamines, etc.—much like a gasoline fueled car will sputter and eventually corrode on diesel fuel.

Predisposition vs. Disease

A genetic predisposition to celiac only becomes a disease (e.g. celiac disease or one of the non-celiac gluten sensitivity enabled conditions)[5] if the body’s inability to digest gluten and certain other grain proteins is ignored at the expense of the immune system.[6]

In other words, an individual genetic predisposition to celiac only develops into full blown disease if that particular individual does not adhere to a gluten-free diet and lifestyle.

An European Union et al commissioned research paper concluded:

Big Business: Catering to a Gluten Free Diet

The facts are everywhere and are illustrated further by these research abstract numbers posted on PubMed:

• 18,565 on “celiac disease” (607 alone in 2012 – Jan. to Jly.)
• 9,689 on “gluten” (385 in 2012 – Jan. to Jly.)
• 3,447 on “glutenfree” (192 in 2012 – Jan. to Jly.)

In addition, 38,878 abstracts deal with wheat research, whereof 1,862 in 2011, and 1,384 in 2012 to date (Jan. to Jly.).

Clearly: $6.1bn spent 2011 on gluten-free foods in the USA—and a 30% growth from 2006 to 2010 in Canada to $2.64bn—indicate “Big Business” complete with the risk of missed, omitted, and mis-information for the goal of promoting greater consumption of gluten-free processed foods.

The Challenge

Our present naming confusion, therefore, may end up fuelling potential manipulation and mismanagement of the patient and consumer from the part of medical, pharmaceutical, supplement, and food industries.

Even the above mentioned latest attempt at coordinating nomenclature and distinction between non-celiac and/or celiac gluten sensitivity brings with it several major flaws and challenges:

• It may take years for new naming conventions to become accepted throughout the international medical and dietary community.
• Recognizing a term such as "gluten-related disorders" or “non-celiac gluten sensitivity” calls for a total revamping of our medical and diagnostic systems in order for the large number (so far about 160) of autoimmune and other disorders to be recognized as gluten-related.  

In addition, future questions will arise as research identifies and confirms more genetic links:

• Already, clinic practice shows that some of the "celiac" patients, previously diagnosed by positive intestinal biopsy[8] and serological findings now, on genotyping[9], turn out to carry "non-celiac" and not “celiac” gluten sensitivity alleles.

Where does this leave such individuals on the traditionally used "celiac disease" versus "gluten-related disorder" specter?

Clearly, despite good intention for a more precise naming distinction, it appears that additional work is needed in order to entrench new medical terminology and disease pictures.

Conclusion

Until then, whenever one of my patients receives a positive HLA gene test, I will adhere for clarity’s sake to the terms of “non-celiac” and/or “celiac gluten sensitivity” (NCCGS).

This terminology refers solely to the underlying toxic effect of gluten and prevents a wrong implication of predisposition=disease diagnosis. Instead, “non-celiac and/or celiac gluten sensitivity” will simply point to the inherited underlying predisposition to specific additional triggers and complications if exposed to gluten.

Most importantly, I will make sure to instill in my patients that disease is not the inevitable outcome of their genetic predisposition, and that a 100% gluten-free diet and lifestyle allows for avoidance, control, and perhaps even reversal of a complex web of interrelated autoimmune-based conditions and disorders, both for non-celiac and for celiac gluten sensitivity related disorders.

Of course, rule number one for all of us is to stay gluten free.  But, focusing on avoidance alone, can get depressing.  Instead, I like to focus on what I can do to strengthen my digestive system.  That way, all the good gluten free food I am consuming can actually benefit my body.  What good is eating healthy if you are unable to absorb the nutrients?  Pouring healthy food into a compromised gut would be as wasteful as pouring dollar bills over an ATM machine and hoping in vain to strengthen your bank account balance.

Research shows that those of us with celiac disease/gluten intolerance often have decreased absorption despite following a strict gluten free diet.  Scott Adams summarized one of these articles on the celiac.com website back in 2003.  The article by Lee SK, et al. entitled “Duodenal Histology in Patients with Celiac Disease after Treatment with a Gluten-free Diet” implied that even though patients may feel better on a gluten-free diet, there may still be damaged intestinal areas that are incapable of optimal nutrient absorption.  Since specific nutrients are absorbed along specific locations in the small intestine, this can have long-term ramifications.  For instance, the proximal portion of the intestine is the site for absorption of vitamin B6 (pyroxidine).  If that portion is damaged, there will be decreased absorption, and your body will be deficient in B6.  You may then experience a range of neurological symptoms such as nervousness, irritability, and shakiness.  And, as happened in my case, you may see a doctor, only to be told you are having anxiety attacks and be handed a prescription for a mild tranquilizer.  Thankfully, I discovered that a good B6 supplement (Solgar “Magnesium with B6”) was all I needed and threw away the offending prescription, but this serves as an excellent—albeit oversimplified—example as to why we have to focus on improving the health of our intestines.

Before I go on, I do want to say that the products listed below do not benefit me financially in the least.  Additionally, these are the products that work best for my body.  You may find a different brand works better for you, but as long as our focus is on getting those intestines healthy, we are all heading in the right direction!

So, read on about what I personally consider the top four intestinal healing supplements…

The first and best all-round product I have found that truly aids in restoring the intestinal lining is a glutamine supplement put out by a company called Metagenics.  The supplement, called “Glutagenics”, contains glutamine, licorice root, and aloe vera.  While studying for my masters in nutrition at Texas A&M University, we learned that glutamine is a key amino acid that aids in restoring the intestinal lining in patients that are transitioning from being tube-fed to a normal diet.   So, when my own chiropractor suggested this supplement and mentioned it contained glutamine, I purchased it and have been taking it on and off for three years.  

Glutagenics is available online through various websites that carry the Metagenics brand. The supplement is unfortunately a bit cost prohibitive, but you can shop around for other brands that contain a similar blend, or buy the three active ingredients separately. Unfortunately, this did not work for me (I have an expensive gut), but it may for you.

The next product is a good omega-3 fatty acid. Omega-3 fatty acids have so many benefits that even if you weren’t working on building up your intestines, they would still be beneficial. During my graduate research, I was fortunate to be part of an ongoing study on the mechanism whereby omega-3 fatty acids reduce the inflammatory response. Obviously, when our intestines are damaged, there is plenty of inflammation. So, including omega-3 fatty acids in our diet is vital.

Thankfully, omega-3 fatty acids are getting easier and easier to come by. My family eats the high omega-3 brand eggs and the Smart Balance peanut butter and butter spreads. You can also purchase wonderful oil blends by Nordic Naturals. My favorite is the lemon-flavored Omega-3 liquid. The lemon flavor truly masks the fishy taste and even my children swallow the oil with minimal grumbling. Nordic Naturals is quite expensive (around $20.00 for 8 oz) but if you compare the amount of DHA you are getting per serving, it is definitely the most DHA for your dollar!

Another great healing nutrient is zinc. Zinc is wonderful for wound healing- you’ll see it in many topical creams, but it also helps restore the intestines. Metagenics puts out a great supplement and their products are great for sensitive individuals. I find that 10mg works best for me. I don’t take it every day – too much will give you a bad taste in your mouth. Once I get that bad taste, I know I need to go off it for awhile.

Finally (for now), find a great probiotic. The one that everyone recommends, by Garden of Life, contains wheat grass, so we have to avoid it. I do extremely well, however, on a product called Lacidophil by Xymogen. My energy levels actually improve on this brand. Xymogen has their own website where you can purchase products directly. Taking a good probiotic restores a healthy balance to your gut flora, which aids in overall health and digestion. I have just recently ordered one from Emerson Ecologics through a natural doctor and it’s supposed to be even better. It has many more strains of the good bacteria so I’m going to try it as soon as it comes in.

Of the four products listed above, the two that I take daily are the probiotic and omega-3 oil. The other two I take on an ‘as-I-need-it’ basis.

Unfortunately, our bodies don’t tolerate a lot of extra supplements, so go slowly and only add one at a time. Keep track of how you feel. You may never tolerate the mass quantities that some companies will try to sell you. But, since you are your own best manager, work with yourself slowly and patiently and you will find your health improves over time.

May God bless you with the wisdom and discernment you need to live a healthy and vibrant life!

Celiac.com 08/17/2008 - Are you confused about genetic testing for celiac disease? Do you want to know what tests you should request and which laboratory to use?  Have you already had celiac DQ genetic testing but are not sure what the results mean or what your risk is of developing celiac disease or gluten sensitivity? These are the questions I will answer in the next few pages. 

What is HLA DQ celiac genetic testing?
To understand celiac DQ genetics and the risk estimates you must also understand how the DQ types are determined and some basic terminology.  Each of us has 46 chromosomes, 23 pairs received from our parents.  We all have two copies of chromosome 6, one from each parent.  Homozygous is when a person has two copies of the same gene, one from each parent.  Our white blood cells (leukocytes) have proteins called human leukocyte antigens or HLA proteins that are inherited from our parents.  The genetic code that determines our HLA patterns resides on chromosome 6.  We all have two DQ patterns, one from each of parents, such that we are all DQx/DQx, where x is a number between 1 and 9.  I am DQ2/DQ7 and my wife is DQ2/DQ5.  We are both therefore heterozygous for DQ2.  That is, we have only one copy of DQ2.  Scott Adams, the founder of celiac.com is DQ8/DQ8.  He is homozygous for DQ8.  There are several HLA patterns.  Some are proteins that reside within cells and others are on the outer surface of cells, and are called class II.  The class II HLA proteins have very important immune functions.  There are several class II HLA protein types but DQ have been found to be important in celiac disease, specifically DQ2 and DQ8. 

What does it mean to be homozygous or heterozygous for celiac genes?
Homozygous means that you have two copies e.g.  DQ2/DQ2, DQ8/DQ8 whereas heterozygous means you have one copy of DQ2 or DQ8.  Some people have one copy of DQ2 and one of DQ8 (DQ2/DQ8) and they have a greater risk for celiac disease than someone with only one copy of either DQ2 or DQ8 but not as great a risk as someone with two copies of DQ2 (DQ2/DQ2).  Since DQ2 is associated with a greater risk of celiac disease than DQ8, then one copy of DQ2 plus a DQ8 (DQ2/DQ8) indicates a higher risk than having two copies of DQ8 (DQ8/DQ8).  Hopefully, I have not lost you yet but if I have please continue to read on because the information that follows will still be helpful to you.

What is this alpha and beta subunit typing and why is it important?
HLA DQ typing consists of two subunits of the DQ molecule, an alpha and beta subunit.  So, both DQ types that indicate a risk of celiac disease, DQ2 and DQ8, are made up of two protein subunits designated alpha and beta.  They determine the complex letter and number combinations reported.  For example, the full DQ2 molecule is typically HLA DQA1*05xx DQB1*02xx.  The A1 is the alpha unit and the B1 is the beta subunit. 

The beta subunit is the most important component of the DQ molecule, but the alpha subunit has also been shown to carry an increased risk for celiac disease.  Unfortunately, since testing for both is more complicated and expensive it is not always done. 

Also, some think that since the beta subunit carries most of the risk and the alpha unit only minor risk, testing for only the beta subunit is adequate.  Several clinical laboratories have chosen this approach.  They only test for, and report on, DQ2 and DQ8 based on beta subunit types, so their results typically look like this: HLA DQB1*02 detected, DQ2 positive, etc.  This is the policy of the laboratory at Bonfils, who also does testing for Quest Diagnostics and Enterolab as well as many hospitals.  However, the alpha subunit of DQ2 also carries some risk for celiac disease. 

What if you are positive for the beta subunit of DQ2 or DQ8 by testing from Bonfils, Enterolab or Quest?
If the beta subunit is present then Bonfils, Enterolab and Quest tests will report DQ2 and/or DQ8 positive.  Sometimes the report will just report DQ2 negative and DQ8 negative, especially when a hospital is reporting the results obtained from Bonfils.  However, when the beta subunit is not present and they report DQ2 negative and/or DQ8 negative, it is still possible that an alpha subunit could be present.  Results reported in this manner are, in my opinion, potentially misleading.  I believe they can lead a doctor to assume that an individual is not at increased risk for, or cannot have celiac disease, when this may or may not be true.  Unfortunately, the patient in such circumstances may be told that they can not have celiac disease, yet they may not only be at risk for the disease, they may well have it while being told it is impossible or extremely improbable. 

What does Prometheus do and how do they report their results?
Prometheus, like Kimball and LabCorp, includes alpha and beta subunit typing.  In the past they did not indicate whether there was one or two copies of DQ2 or DQ8 if someone was positive.  If a patient was DQ2 and DQ8 positive then these labs reported their full genetic DQ type.  However, if one or the other was negative, their exact genotype was not reported.  Recently, not only has Prometheus started reporting the full DQ2 and DQ8 genotype, but they are now reporting whether someone is homozygous or heterozygous as well.  They are also reporting the relative risk for celiac disease based on the pattern shown by testing.  However, they are still not reporting the other DQ types. 

What is the advantage of the new Prometheus reporting?
Since Prometheus results now include a calculation of the individual’s risk of celiac disease, compared with the general population, the patient can see how high their risk of celiac disease is, as well as being able to estimate the risk for their parents and their children. 

As you can see, the risk of celiac disease has a wide range of possibilities, which depend on the individual’s DQ results.  This risk can be below 0.1% if you do not have any portion of the high-risk genes DQ2 and DQ8.  On the other hand, the risk may be very high (more than 31 times the risk of the general population) if you have two copies of the full complement of DQ2 molecule.  Again, I would like to point out that if you have DQ2/DQ2, DQ2/DQ8, or DQ8/DQ8, then both of your parents and all of your children have to have at least one copy of an at-risk celiac gene.  Your child’s complete type will depend on the DQ contribution from their other parent. 

What other laboratories do both alpha and beta subunit testing?
Kimball Genetics and LabCorp also report both alpha and beta subunit results but the advantage of their testing is that they report the other specific DQ types detected.  Gluten sensitivity is found in all DQ types except DQ4.  Other DQ types, particularly DQ1, DQ5, are associated with a risk of gluten related neurological and skin problems.  Microscopic colitis, food allergies and oral allergy syndrome reactions are also found in association with other DQ types.  Though Enterolab does report other DQ types, including these markers of risk for gluten sensitivity, they do not test for, or report, alpha subunits since their DQ testing is done by Bonfils.  Based on the limited data I have accumulated so far, DQ2 and DQ8 also seem to carry a risk of mastocytic enterocolitis. 

What if you do not have DQ2 or DQ8?
According to data accumulated, but as of February 2008, not yet published by Dr. Ken Fine, unless you are DQ4/DQ4 you are still at risk for being sensitive to or intolerant of gluten.  According to Fine’s fecal gliadin antibody data all DQ types except for DQ4 carry a risk of gluten sensitivity.  My clinical experience supports this claim.  The presence of one copy of DQ1, DQ3, DQ5, DQ6, DQ7, or DQ9, even with one DQ4, is associated with a risk for elevated stool gliadin antibody and symptoms of gluten sensitivity that responds to a gluten free diet. 

What if your genetic testing was done by Enterolab, Quest, Bonfils or a hospital that utilized Bonfils, and it indicated that you were DQ2 and DQ8 negative? 
Since Bonfils does not test for the alpha subunit and they perform the testing for Enerolab and Quest, you may not be completely negative for DQ2 or DQ8.  You do not have the beta subunits associated with the highest risk for celiac disease.  For example, you could be “half-DQ2” positive and still be genetically at risk for the autoimmune form of gluten sensitivity that we know as celiac disease, along with all of its risks. 

What if you have not yet had celiac DQ genetic testing? 
I recommend that everyone have the testing.  I realize that most insurance companies and doctors, including some celiac experts, would disagree with me.  However, the value of DQ testing is that it can provide a great deal of information about your risk, especially if you have testing done for both alpha and beta subunits.  I recommend that you have testing done by Kimball Genetics, LabCorp or Prometheus if you have not yet had genetic testing done.  If your insurance or budget does not allow for this more expensive testing, but does cover testing by Quest or Bonfils or you can afford the $159 that Enterolab charges, then I still recommend that you get DQ testing using one of these laboratories.  You just need to be aware of the limitations of the results as I have reviewed them here.

What are the advantages of DQ testing through Kimball Genetics?
Kimball can perform testing on either blood or mouth swab samples.  The tests can be ordered without a doctor’s order.  You can purchase testing on mouth swab sample for $345.  The advantages of Kimball’s tests include alpha and beta subunit testing and full DQ typing to determine if you carry the other gluten sensitive DQ patterns besides DQ2 and DQ8.

What about LabCorp?
LabCorp also provides both alpha and beta subunit testing and they report the other DQ types.  They only provide testing on blood samples, a doctor must order the testing, and preauthorization is required. 

Do health insurance companies cover celiac DQ genetic testing?
Many but not all health insurance companies cover HLA DQ testing and almost all require preauthorization.  The ICD9 diagnostic codes that typically are honored are V18.5 genetic predisposition for gastrointestinal disease; V84.8, genetic predisposition for other diseases; and 579.0, celiac disease. 

Why are the genetics so difficult to understand and why are so many doctors either unaware of the testing or reluctant to order the tests?
I write and speak about DQ genetic testing frequently, and try to get testing for as many of my patients as possible.  However, many insurance companies will not cover the cost of these tests.  Most primary care doctors and even some GI doctors are completely unaware of the existence of a genetic test for celiac disease.  The testing is difficult to understand and the reporting by some labs is very confusing and even misleading. 

I realize that understanding the DQ genetics is difficult for the average layperson.  Most scientists and doctors don’t understand this information, so don’t despair if you are having difficulty following this or understanding your results, and don’t be surprised if your doctor does not understand them either.  However, you do not need to completely understand the complexities of HLA typing to locate your DQ types and determine your risk of celiac disease, non-celiac gluten sensitivity, etc. 

Then what do you need to know or remember about celiac DQ genetics?
Hopefully, you now understand enough to know that you should consider having celiac DQ testing, if possible, especially if you have symptoms, laboratory tests, or an intestinal biopsy that is suggestive of celiac disease.  You should also know that the testing can be done on blood or mouth swabs, and many insurance companies will cover the testing but most require pre-authorization.  You should also be aware that the testing is available without a doctor’s order, if you are willing to pay for it, and that some tests are better than others.  I also hope you understand that the tests can help you determine your risk for celiac disease or if you are at risk for non-celiac gluten sensitivity.  You should also know that your results, especially when combined with those of one or more family members, may help you determine, to some degree, the risks for your parents and your children.  You should also know what laboratories offer testing, what test codes your doctor should use to order the tests, and that the absence of DQ2 or DQ8 does not exclude risk of gluten sensitivity or intolerance.  Depending on what laboratory conducts your DQ testing, your results also may fail to exclude your risk of celiac disease. 

What if I am still confused or I don’t know how to interpret my genetic results or my previous evaluation for celiac disease?
If you are still confused by your test results or want more a personalized review of your results, symptoms or diagnostic tests I recommend that you see a physician who is an expert in celiac disease and understands these tests.  I also offer on-line consultation for a reasonable fee through a secure consultation site, Open Original Shared Link.  You simply register (registration is free) for secure on-line communication and request a consultation.  The consultation fee is $50, and some insurance companies will cover on-line communication.  I also see many patients from outside of Colorado Springs for consultation if you are willing to travel here. 

In genetically susceptible people, the ingestion of wheat gluten protein triggers an inflammatory reaction in the small bowel that causes a collapse of the villi, the small finger-like projections responsible for nutrient absorption. This greatly reduces the amount of surface area available for nutrient, fluid and electrolyte absorption. The extent of this intestinal damage generally correlates to the severity of the symptoms.

Celiac generally presents gastrointestinal and other symptoms including: abdominal cramps; gas and bloating; diarrhea; fatigue or general weakness; foul-smelling or grayish stools that are often fatty or oily; Osteoporosis; stunted growth in children; weight loss, however many individuals have little or no symptoms at all.

Celiac disease can also occur in asymptomatic individuals who have associated conditions. Recent studies show the prevalence of celiac in children under 15 years in the general population to be 3 to 13 per 1,000 children, or approximately 1:300 to 1:80 children. A figure of 1 in 133 people is commonly used as an average for rates of celiac disease in the general population.

Celiac Disease Diagnosis

Celiac disease can be challenging to diagnose, because its symptoms are often similar to those of other diseases. Celiac disease is easily taken for other diseases such as Crohns disease, chronic fatigue syndrome, diverticulitis, various intestinal infections, irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss. Thus, celiac disease is often misdiagnosed, and greatly under-diagnosed.

Celiac practice guidelines call for routine screening of anyone with a family history of celiac disease or of disorders such as thyroid disease, anemia of unknown cause, type 1 diabetes or other immune disorders or Downs syndrome. Otherwise, patients are generally screened case by case according to individual symptoms.

Considerations for Celiac Disease

As a general practice, celiac disease should be considered in the earliest stages of differential diagnosis of children with persistent diarrhea, especially with failure to thrive. Celiac disease should also be considered in the differential diagnosis of children with persistent GI symptoms, including recurrent abdominal pain, constipation and vomiting, and any other GI issues commonly associated with celiac disease.

Testing is recommended for children with celiac-associated non-gastrointestinal symptoms, such as delayed puberty, dental enamel hypoplasia of permanent teeth, dermatitis herpetiformis, iron-deficient anemia resistant to oral iron, osteoporosis, and short stature. Testing is also recommended for asymptomatic children whose relatives have celiac, and those who have celiac-associated conditions, such as autoimmune thyroiditis, Down syndrome, selective IgA deficiency, Turner syndrome, type 1 diabetes mellitus, or Williams syndrome.

Celiac practice guidelines call for testing asymptomatic children who belong to at-risk groups at around 3 years of age, as long as they have eaten gluten regularly for at least 1 year before testing.

First-degree relatives of individuals with celiac disease may or may not manifest symptoms of the disease.

Predisposition to gluten sensitivity has been mapped to the major histocompatibility (MHC) D region on chromosome 6. The most important HLA haplotype is DQw2, which is often in linkage with DR3. Other important HLA haplotypes identified are DR7 and DPB 1, 3, 4.1 and 4.2.

The sites on these MHC class 2 expressed proteins responsible for interacting with gliadin and host T cell receptors thereby sensitizing the intestine to gluten have not been identified.

Therefore, guidelines call for regular testing of asymptomatic individuals with negative serological tests, and who belong to at-risk groups. Treatment guidelines do not presently call for routinely testing autistic children for celiac disease, as there is no evidence that celiac is more in autistic children than in the general population.

Celiac Disease Testing

There is currently no test for diagnosing celiac disease with 100% certainty. For most people, the disappearance of symptoms, and/or the appearance of a "normal" biopsy following the adoption of a gluten-free diet provide the strongest evidence for celiac disease or gluten intolerance.

A blood test, such as anti-tissue transglutaminase and anti-endomysial antibodies, can detect abnormally levels of antibodies, and is often used in the initial detection of celiac in people who are most likely to have the disease, and for those who may need further testing.

Based on the current evidence and practical considerations, including accuracy, reliability, and cost, measurement of IgA antibody to human recombinant tissue transglutaminase (TTG) is recommended for initial testing for celiac disease. Although as accurate as TTG, measurement of IgA antibody to endomysium (EMA) is observer dependent and therefore more subject to interpretation error and added cost. Because of the inferior accuracy of the antigliadin antibody tests (AGA), the use of AGA IgA and AGA IgG tests alone is no longer recommended for detecting celiac disease.

Several serological markers are useful in diagnosing celiac disease. The first of these is IgG class antigliadin antibody (AGA). This antibody is sensitive to gluten, but it is also found in other diseases and thus is not a good a specific indicator of celiac.

Generally, IgA class AGA is more specific, but about 2% of celiac patients show selective IgA deficiency, and thus show negative results, even though they have celiac.

A positive IgG and IgA AGA gives a reported sensitivity of 96% to100% and specificity of 96% to 97%. Recent studies show Anti-reticulin antibodies (ARA) in people with celiac disease, but these appear to be nonspecific. In fact, taken alone, IgG ARA is largely ineffective. However, IgA ARA has sensitivity of 97% and a specificity of 98% in adults. These figures are much lower in children.

IgA class anti-endomysial antibody (EMA) and human jejunal antibody (JAB) have recently been identified as both sensitive and specific for celiac disease.

The antibody EMA, which reacts against endomysium reticulin fibers, has been found only in people with active celiac and not other diseases. As EMAs are associated with other diseases in children, they are a less accurate indicator of celiac in children than in adults.

Studies in children less than 2 years old with celiac disease have shown a steep fall in EMA sensitivity, so EMA appears even less useful than in children over 2 years of age.

Finally, since the EMA and JAB antibody tests may be negative in adults with celiac disease and IgA deficiency, they cannot be considered definitive for diagnosis of celiac disease.

A complete panel of antibody tests seems to be most accurate method of diagnosing celiac disease.

Taken together, a positive panel of IgG AGA, IgA AGA and EMA can predict the presence of celiac disease in 99.3% of patients. A negative panel of IgG AGA, IgA AGA and EMA can predict the absence of celiac in 99.6% of patients.

These antibodies tend to diminish or disappear when individuals maintain a gluten-free diet.

More than 90% of patients with celiac disease have genetic markers HLA DQalpha *0501, and HLA DQbeta *0201. Negative tests for these markers in conjunction with negative serum antibody tests suggest an absence of celiac disease. However, positive tests for the genetic markers do not necessarily mean that the patient has celiac disease. In conclusion, genetic markers can be used as a test to exclude celiac disease as a diagnosis.

Celiac Disease Biopsy

A diagnosis of celiac disease is generally confirmed through a biopsy, by looking for celiac associated damage to the small intestine.

One important fact is that intestinal biopsies are regularly obtained endoscopically from the duodenum and therefore provide no information regarding the extent of disease along the jejunum.

Flattening of the villi usually occurs first, and most severely, in the duodenum, as it the duodenum is the first part of the intestine to be exposed to gluten. Conversely, the villi of the jejunum, which receives much less exposure, are often asymptomatic, and nearly normal.

In most of these individuals, treatment with a gluten-free diet results in the return of all villous and crypt structures to normal or near normal.

Certain conditions, especially infection, can yield intestinal biopsy results that are similar to those of celiac disease, and it is important to consider and/or exclude these conditions when celiac disease is suspected.

Practice Guidelines for Treatment of Celiac Disease with an Aggressive Life-long Gluten-free Diet

As there is presently no cure for celiac disease, avoiding gluten is crucial. Practice guidelines call for a life-long gluten-free diet as the standard treatment for celiac disease. To manage the disease and prevent complications, its essential that patients avoid all foods that contain gluten. That means it is crucial for the patient to avoid all foods made with wheat, rye, or barley. This includes types of wheat like durum, farina, graham flour, and semolina. Also, bulgur, kamut, kasha, matzo meal, spelt and triticale. Examples of products that commonly contain these include breads, breading, batter, cereals, cooking and baking mixes, pasta, crackers, cookies, cakes, pies and gravies, among others.

It is also good practice for patients to avoid oats, at least during initial treatment stages, as the effects of oats on celiac patients are not fully understood, and contamination with wheat in processing is common. So, its a good practice when first adopting a gluten-free diet to eliminate oats, at least until symptoms subside, and their reintroduction into the diet can be fairly monitored and evaluated.

Another good practice is coaching celiac patients to avoid processed foods that may contain hidden gluten. Wheat flour is commonly used in many processed foods that one might never suspect. A few examples include candy bars, canned soup, canned meat, energy bars, ketchup, ice cream, instant coffee, lunchmeat, mustard, pastas, processed meat, sausages, and yogurt.

Also, gluten is also commonly found in many vitamins and cosmetics, such as lipstick, and in the production of many capsules and tablets, where wheat starch is a commonly used binding agent.

Obviously, patients must avoid beer made with barley or wheat (there are gluten-free beers), though wine, brandy, whiskey and other non-wheat or non-barley alcohols are okay.

Encourage patients to eat a diet rich in fish, fresh meats, rice, corn, soybean, potato, poultry, fruits and vegetables. Patients should also avoid milk and other dairy products, as it is common for patients with celiac disease to be lactose intolerant. Dairy products can often be slowly reintroduced into the diet over time with successful treatment.

It is also important for patients to learn to identify gluten-free foods. Because a gluten-free diet needs to be strictly followed, and because food ingredients may vary from place to place and even over time for a given product, it is important to always read the label.

For lists of gluten-free foods and products, and for specific advice on adopting, shaping and maintaining the gluten-free diet that is right for them, patients may wish to consult a registered dietitian who is experienced in teaching the gluten-free diet.

Most patients who remove gluten from their diets find that their symptoms improve as inflammation of the small intestine begins to subside, usually within several weeks. Many patients who adopt a gluten-free diet report an improvement within 48 hours.

Results of a gluten-free diet can be especially dramatic in children with celiac disease. Not only does their diarrhea and abdominal distress usually subside but, frequently, their behavior and growth rate are often markedly improved.

A reappearance of intestinal villi nearly always follows an improvement in symptoms.

In younger people, the villi may complete healing and re-growth in several months, while in older people, the process may take as long as two to three years.

In cases where nutritional deficiencies are severe, celiac patients may require vitamin and mineral supplements to help bring about a healthier vitamin profile: folic acid and B12 for patients with anemia due to folate or B12 deficiency; vitamin K for patients with an abnormal ProTime; calcium and vitamin D supplements for patients with low blood calcium levels or with osteoporosis. For all such cases, individuals should consult their health professional.

Skin lesions common in patients with dermatitis herpetiformis often improve with adherence to a gluten-free diet.

The Importance of Follow-up Testing for Celiac Patients on a Gluten-free Diet

Research indicates that only half of those patients who have had celiac disease for at least 20 years were following a strict gluten-free diet. Up to 30% of those patients showed evidence of bone loss and iron deficiency. These are but a few of the long-term consequences for celiac patients failing to follow a gluten-free diet.

Thus, it is important to conduct follow-up testing of celiac patients to determine the success of their gluten-free diets, and the progress of their treatment, and to make any necessary adjustments to each. Even done properly, with no accidental consumption of gluten, the elimination of gluten antibodies from the blood takes months. To estimate the treatments effectiveness, current guidelines call for a single serological testing after 3-6 months on a gluten-free diet.

For patients who are free of antibodies, and actively following a gluten-free diet, it is wise to consult a doctor if there is any recurrence of celiac-associated symptoms. First-degree relatives of celiac patients should have a repeat blood test every 2-3 years.

health writer who lives in San Francisco and is a frequent author of articles for Celiac.com.