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Gluten-free, Wheat-free living

What Is It?

by Gerald N. Callahan, Ph.D.

Celiac disease (CD) is an hereditary autoimmune disorder – not an allergy – triggered in some people (children and adults) when they ingest a group of proteins called glutens. These proteins are found in certain grains, including wheat, barley, rye, spelt, and kamut. If you have CD and you ingest gluten (from these offending grains), your own immune system begins to flatten the nutrient-absorbing, finger-like villi in your small intestine, interfering with your body’s ability to absorb nutrients.

About 1 in 100 people worldwide (3 million Americans) – have celiac disease, also known as celiac sprue and gluten-sensitive enteropathy. It’s possible to be gluten-sensitive without having celiac disease, and it’s possible to be wheat-sensitive without being gluten-sensitive (able to tolerate other gluten-containing grains, such as barley or rye). 

Symptoms of Celiac Disease

There are dozens of symptoms related to celiac disease, but because most of us have a unique mix of symptoms, it is often very difficult to pinpoint celiac disease as the culprit. For this reason, it can take many years to accurately diagnose celiac disease. Many of us with celiac disease have experienced one or more of the symptoms below (and some people report no symptoms at all). This is not meant to be a complete list:

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Bloating/abdominal cramping

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Constipation

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Depression

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Diarrhea

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Dry skin

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Endometriosis

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Fatigue

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Fibromyalgia/joint pain

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Flatulence (excessive gas)

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Headache

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Hypothyroidism (low thyroid)

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Infertility

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Late puberty

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Mood swings

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Mouth sores

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Muscle cramping in legs and hands

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Osteoporosis/osteopenia

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Poor concentration/poor memory

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Respiratory problems (sinus infection, sore throat, etc.)

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Small stature (especially in children)

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Unexplained weight loss

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Unusual stools (hard, small/large, floating, loose)

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Vomiting


When Gluten Affects the Skin and Brain

For some people, gluten sensitivity manifests in other ways. Instead of affecting the gastrointestinal tract, the skin or brain can be affected by ingesting gluten.

When some people eat gluten, they experience a painful skin condition called dermatitis herpetiformis (DH) – tiny, itchy blisters that often form in clusters. Although DH sufferers may not have celiac disease per se, adherence to a gluten-free diet along with medications helps to relieve this condition.

Likewise, some people experience an alarming loss of coordination when they eat gluten. This neurological disorder is called gluten ataxia, and many neurologists believe that anyone diagnosed with Parkinson’s disease ought to be evaluated for gluten ataxia. As with DH, people who suffer with gluten ataxia may not have celiac disease, but adherence to a gluten-free diet helps to relieve gluten ataxia.

Testing for Celiac Disease

There are a number of tests for celiac disease, including blood tests and endoscopic biopsies of the small intestine.

The blood tests –

All of the available blood tests are designed to detect the aftermath of a war, a war waged by the immune system against gluten proteins and pieces of the small intestine. Like the shell casings that still litter many battlefields, after a skirmish with gluten, the immune system leaves behind proteins called antibodies or immunoglobulins (Igs). 

Especially important are antibodies against gliadin (a component of gluten) and antibodies against the small intestine, including antibodies against endomysium and reticulin (two components of the villi, important finger-like projections of the small intestine).  Also important are antibodies against another protein called tissue transglutaminase or tTG (an enzyme that changes the characteristics of some gluten proteins). 

Antibodies come in five different forms: IgA, IgD, IgE, IgG, and IgM.  According to Peter H.R. Green, M.D. – a widely recognized authority on celiac disease – the most useful tests for celiac disease focus on the levels of IgA antibodies against gliadin, endomysium, reticulin, and tTG. 

According to Dr. Green, the most useful of these at the outset are the anti-tTG and antiendomysial IgA tests.  Both of these are more than 90 percent specific.  However, the cheaper of the two is the anti-tTG test.  If the anti-tTG test is negative, but the patient continues to experience celiac-like symptoms, Dr. Green suggests proceeding to other tests up to and including endoscopy and biopsy of the villi.

Throughout this process, both physicians and patients should remember that about one in four celiac patients have deficiencies in IgA antibodies. That means that in spite of ongoing celiac disease, about 25 percent of celiac patients will not exhibit anti-tTG or antiendomysial antibodies. So when CD symptoms are present, but these tests are negative, the physician should also measure total IgA levels to see if the patient is generally deficient in IgA.  If there is an IgA deficiency, then a blood test for the IgG-class of anti-tTG antibodies should be performed. 

The endoscopic biopsy –

Of all the celiac-disease tests, Dr. Green feels that the duodenal (upper small intestine) biopsy is the most revealing. Dr. Green recommends at least 4 to 6 endoscopic biopsy specimens be taken from the duodenum, since villous atrophy (flattened villi) can be patchy. And because of the patchy distribution of destruction in the small intestine, a negative biopsy does not conclusively rule out celiac disease.

HLA testing –

One other test that may add useful information is HLA testing. HLA proteins are found on the surface of nearly all human cells. But in the general human population there are hundreds of different HLA molecules. So, the type of HLA molecules usually varies considerably from person to person. Ninety to ninety-five percent of people with celiac disease have a particular HLA molecule called HLA-DQ2, and the other 5 to 10 percent have HLA-DQ8.

 However, many people in the general population (most of whom do not have celiac disease) also have HLA-DQ2 or HLA-DQ8. Because of this, a positive test result for either of these molecules is not a diagnosis of celiac disease. If a patient has celiac-disease symptoms AND a positive test for either molecule, the likelihood of celiac disease is greater.

Only a small amount of blood is needed for HLA testing, and the presence of HLA-DQ2 or HLA-DQ8 can add one more useful bit of information. This testing may also be useful in considering family members' risk of celiac disease. Of the tests mentioned here, this is the only one that can be performed with equal accuracy on a person who is or is not consuming gluten.

A complex diagnosis process –

As you can see, diagnosis can be a long and complex procedure, and negative results don’t necessarily rule out celiac disease. In addition, to maximize the value of such testing, patients must be regularly ingesting gluten for some time before testing. Otherwise the antibodies may disappear, allowing the villi to return to normal. 

Some people who have experienced regression of their symptoms after going gluten-free may not feel it is worth returning to a gluten-rich diet for an unequivocal diagnosis.

Treating Celiac Disease

Although there are many ongoing celiac-disease studies, currently there is no cure for celiac disease. Lifelong adherence to a gluten-free diet usually eliminates symptoms.

Although this sounds difficult and can be challenging at first, if one has to have an autoimmune disorder, celiac disease is the one to have! No other autoimmune disorder is so easily managed.

Living the Gluten-Free Life

Learning where gluten hides in our food supply (especially in processed foods such as canned soups, salad dressings, etc.), medications, cosmetics, etc., takes time. It’s the first step (of many) in beginning the gluten-free life. There are several excellent resources available to help master the learning curve. Check out our celiac links for more information.

Joining a support group such as the Celiac Sprue Association (CSA) can be enormously helpful. The CSA is dedicated to helping people with celiac disease and dermatitis herpetiformis worldwide. Most newly diagnosed people find the camaraderie, information, and life experiences that CSA members provide very comforting.

Educating yourself by enrolling in gluten-free cooking classes is not only fun but delicious. You’ll learn how to cook with gluten-free grains/products, and you’ll discover that the gluten-free life is more diverse than the wheatful life.

It’s Getting Easier

Living the gluten-free life is much easier than it used to be. Commercial awareness has increased exponentially in the last few years, and it’s only going to get better.

The information on this website is fully copyrighted and trademark-protected. This information is provided strictly for educational purposes and is in no way intended as a substitute for the advice or counsel of licensed health-care providers. The material featured here is not compiled by medical practitioners. No claims or guarantees are intended or implied. Visitors to this website are urged to discuss medical concerns/information with the health-care professional(s) of their choice.