Celiac disease

Advance For Nurses Magazine
Vol. 9 •Issue 11 • Page 21

Making the Connection

Underdiagnosed in the U.S., celiac disease can be identified and treated if the condition is understood

By Cleo Libonati, RN, BSN

Celiac disease is a common food sensitivity that can be the underlying source of hundreds of health problems mistakenly attributed to other causes. This insidious disorder has the potential to disfigure, disable and destroy lives at any age. Yet, of the 3 million affected Americans, only 3 percent are diagnosed and treated.1 Prevalence rates are higher in certain populations, such as blood relatives of a person with celiac disease and those with autoimmune disorders.

Unfortunately, people in the U.S. with this condition actively seeking help for their symptoms can go a lifetime without diagnosis and proper treatment. Typically, worldwide diagnosis is faster.
Genetic Susceptibility & Gluten

Celiac disease is also called celiac sprue, nontropical sprue, gluten-sensitive enteropathy or simply celiac by the public.

This immune-mediated disorder stems from an inherited lifelong intolerance to the gluten protein found in wheat, barley, rye and oats. When ingested, gluten resists the breakdown action of normal digestive enzymes into harmless amino acids. Undigested peptides precipitate hyperpermeability of the small intestinal lining (so-called “leaky gut”) to breach the intestinal barrier defense system. In this way, gluten unnaturally gains entrance to the lamina propria.

Within the lamina propria, gluten peptides encounter the enzyme transglutaminase and the local immune system. Transglutaminase deamidates, or breaks off, the rich glutamine residues in gluten. This deamidation creates the toxic molecular compounds, or epitopes, the immune system identifies as foreign.

These epitopes trigger autoimmune antibodies in genetically susceptible individuals. Ensuing inflammation swells affected portions of the small intestinal lining and damages its delicate structures, interfering with its function to finish digestion and absorb nutrients.

While gluten itself is the environmental cause for antibody development, some stressors that can trigger active disease include gluten overload, pregnancy, viral gastrointestinal infection, surgery and severe stress.
Recognizing Celiac Disease

Despite dramatic advancements in knowledge and testing procedures, recognition of this multifaceted disorder is lacking.1Celiac disease often is undiagnosed due to ignorance of the following:

Pathophysiology — The traditional description of celiac disease as an intestinal disorder with malabsorption as the primary defect is a shadow of the real condition.

Prevalence — In contrast to the historic belief celiac disease affected just one in 5,000 individuals, antibody testing demonstrated prevalence of one in 100.

Diagnostic tests — Healthcare providers are unfamiliar with new and improved testing methods.

Manifestations — Many patients do not have diarrhea and wasting symptoms of classic celiac disease. Extraintestinal symptoms predominate in people with atypical symptoms.
How It’s Diagnosed

Diagnosis of celiac disease is made by a positive serologic antibody study and confirmed by histological findings of small-bowel biopsy specimens obtained by endoscopy and improved clinical response following a gluten-free diet.

The single most important step in diagnosing celiac disease is to recognize its myriad clinical features. No single test can definitively diagnose or exclude celiac disease in every individual; there also is a continuum of laboratory and histopathologic results.1

Positive anti-endomysium antibodies and positive anti-tissue transglutaminase antibodies show celiac disease. Positive antigliadin antibodies demonstrate sensitivity to gliadin itself, the gluten in wheat.

Not all patients have positive antibodies at presentation. When symptoms are present but test results are negative, further testing is warranted, including selective immunoglobin A deficiency. In the event the patient started a gluten-free diet prior to testing, suggest a gluten challenge of 3 months or longer in the expectation of antibody development.

Positive small intestinal biopsy shows the degree of villous atrophy, yet this is not foolproof either. The gastroenterologist must be skilled in taking accurate specimens from multiple sites, and the pathologist must be skilled in examining them properly. In addition, damage may be submicroscopic, returning a level not yet detectable by histological examination.

Additional studies include sonogram and genetic testing. Sonogram shows edema and abnormal appearance of the bowel wall. This is especially helpful for children or those who cannot undergo an endoscopy.

More than 97 percent of people with celiac disease share the same genetic human leukocyte antigen (HLA) haplotype markers, HLA-DQ2 and HLA-DQ8. While HLA genotyping is not specific for celiac disease, it has a very high negative predictive value. If the markers are not present, genetic testing essentially rules out the disease.

Annual follow-up testing is warranted for patients with negative test results who continue to show symptoms.
Recognizing Symptoms

There are no typical symptoms of celiac disease, although the most common clinical presentation is unexplained iron-deficiency anemia with or without gastrointestinal symptoms.

Celiac disease, by way of malnutrition, immunity or the direct toxic effect of gluten on cellular structures, has the potential to produce a broad range of symptoms, associated disorders and complications that may affect any organ or body system. Manifestations vary and may appear at any age.

Nutrient deficits are responsible for many seemingly unrelated conditions, such as depression, inability to concentrate, anxiety, insomnia, defective tooth enamel, coagulopathies, hypertension, obesity, anorexia and excessive thirst.

Associated autoimmune disorders may affect any body tissue, including type I diabetes mellitus, hypothyroidism and Grave’s disease, to name a few. Further, severe complications include various cancers such as B-cell non-Hodgkin lymphoma, cryptic intestinal T cell lymphoma and enteropathy-associated T cell lymphoma.

Chronic diarrhea in childhood should provoke screening. Pediatric presentation for celiac disease could involve hypotonia, failure to thrive, growth retardation, short stature, convulsions, poor bone and tooth development, thymic atrophy and delayed puberty.
Treatment

Treatment is a gluten-free diet. Excluding gluten usually results in rapid healing of the small intestinal mucosa, resolution or improvement of nutritional deficiencies, and disappearance of many manifestations of celiac disease.

The gluten-free diet is challenging due to the plethora of gluten-containing foods in the standard American diet. To succeed, patients need detailed diet instruction, including how to read food labels and identify hidden sources of gluten, such as in medications and supplements. Refer patients to a qualified dietitian if possible; otherwise, nurses can teach appropriate information.

Inform patients about community help such as celiac support groups, which offer practical advice on how to shop and cook, and where to dine. Many support groups hold their meetings at local hospitals.
Prognosis

Clinical outcome depends on duration of exposure to gluten. The longer gluten is consumed, the more the body is damaged, and the greater the likelihood of health disorders and complications developing.

Intestinal permeability improves within 2 months of starting a gluten-free diet. Despite a good clinical response, abnormal endoscopic and histologic appearances persist in the majority of patients.2Patients who receive adequate education about celiac disease and treatment with the gluten-free diet are better able to prevent intestinal damage and improve their health by dietary self-management. Clearly, nursing intervention that uncovers hidden celiac disease, provides nutritional education and promotes regular follow-up will considerably improve prognosis. n
References for this article can be accessed at www.advanceweb.com/nurses. Click on Education, then References.
Cleo Libonati is author of Recognizing Celiac Disease, and co-founder, president and CEO of Gluten Free Works Inc., Ambler, PA.
This article copyrighted to Advance For Nurses and can be accessed online at their website at http://nursing.advanceweb.com/Editorial/Search/AViewer.aspx?AN=NW_08may12_n4p21.html&AD=05-12-2008

This year Passover is from sundown on March 25 through April 1, which is great news for those who eat gluten free because a number of gluten-free products have started arriving on store shelves that are only available during Passover. Crackers, bars, macaroons, and cereal are the newest addition to the Manischewitz line of gluten-free products. Read More »

If you are looking for gluten-free restaurants, bakeries, grocery stores and more in the San Francisco Bay Area, look no further. Now there’s a map! This handy guide gives locations from Mendocino to Monterey and as far east as South Lake Tahoe.

GF Business NorCal

Read More »

September 13th marks Celiac Sprue Association’s (CSA) Celiac Awareness Day. This provides a great time for people suffering with Celiac Disease to spread awareness to their friends, family, and doctors. The CSA has an awareness packet that is available for download from their website.

Several possible ideas to promote awareness is to take brochures to your doctor and health/fitness clubs. Host a luncheon with gluten free food to your friends and co-workers. Work with a restaurant to develop a gluten free menu.

This provides an ideal opportunity to teach others about the gluten free diet.

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Author Information: Cara Goedecke

Cara Goedecke – Oklahoma City Gluten free Examiner
http://www.examiner.com/x-22374-Oklahoma-City-Gluten-Free-Examiner
Oklahoma City Celiac Blog http://www.okceliac.com/blog/
e-mail: caralg520@gmail.com
Facebook OKC Celiac: www.okceliac.com

Celiac disease awareness is desperately needed – now more than ever. 

While the gluten-free diet has exploded in popularity, celiac disease remains massively under-diagnosed.

Why? Two Reasons: 

1. The public has shifted its focus to the gluten-free diet and away from celiac disease due to the media. The media likes diets. Diets sell. Oddly named diseases that are difficult to describe in catchy sound bites don’t sell.

2. Doctors do not have the information they need to recognize, diagnose and treat this common disorder. The information exists but there is no authority that actively ensures Read More »

(Editor’s Note: The author of the article reprinted below may have meant celiac disease when he wrote “gluten allergies.”)

Mayo research suggests gluten allergies more common
by Sea Stachura, Minnesota Public Radio
July 1, 2009

Rochester, Minn. — Celiac disease — an allergic reaction to gluten – is four times more common today than it was 50 years ago, according to research conducted at the Mayo Clinic.

Mayo gastroenterologist Joseph Murray says one in 100 people now have the disease.

He says doctors had thought the marked increase was a result of better screening, but the research suggests that celiac disease is truly becoming more common, paralleling other diseases like type one diabetes or allergies.

Murray says that suggests this could be an autoimmune response, or it could be that something has changed about gluten.

“When it’s not busy fighting infections in our environment it’s up to no good and turns on ourselves or create autoimmunity. That’s one theory,” he said. “Celiac disease is unusual in that we know the environmental trigger for the disease. You have to eat gluten, the protein from wheat, barley or rye to get the disease. So another possibility is that something changed about gluten.”

People with untreated celiac disease are also four times more likely to die earlier than people without the disease. Murray says people of all ages can develop the disease.

Source: http://minnesota.publicradio.org/display/web/2009/06/30/mayo_gluten_allergies/

There is no cure for celiac disease. But, there may soon be a new therapy to go along with a gluten-free diet.

A Phase II medical research study to test a potential therapy for people with celiac disease is underway and signing up participants at CeliacTrial.com.

Alessio Fasano, MD. Co-founder of Alba Therapeutics

The investigational drug, Larazotide Acetate, was developed by Alba Therapeutics. It passed Phase I trials and is now being studied to determine how effective it is in different doses and whether side effects develop. Alba Therapeutics was co-founded by celiac disease researcher, Dr. Alessio Fasano, director of the Celiac Disease Center at the University of Maryland.¹

The therapy is based on Dr. Fasano’s discovery that tight junctions between cells in the intestine can be opened or closed and that gluten relaxes these junctions. It is this process that leads to gluten improperly crossing into the body, thereby eliciting an immune reaction that leads to inflammation and damage characteristic of celiac disease.

“The reality is that the paracellular space is a gate, not a wall or fence. And if material gets through that space – even if it is only 1 to 5% of what normally travels through the cell – it could be associated with disease.”
-Alessio Fasano, MD¹

Dr. Fasano discovered the potentially therapeutic utility of down-regulating intestinal permeability of celiac disease.¹ In other words, he discovered that Read More »

Editor’s note:

In the following medical research study, healthy participants were enrolled to examine the effects of vitamin D on insulin production and use in the body. This research shows that:

1) Vitamin D plays an important role in insulin sensitivity in the body, and deficiency of vitamin D hampers production of insulin hormone by beta cells in the pancreas.

2) People with vitamin D deficiency are at risk for developing type 2 diabetes mellitus. Type 2 diabetes mellitus is characterized by lack of insulin sensitivity in body tissues and inadequate production of insulin hormone in the pancreas. Read More »

Editor’s note: Promising research published January 8, 2007 shows that adequate levels of vitamin D in the elderly are important to maintain cognitive function or thinking skills that include use of language, awareness, social skills, math ability, memory, reasoning, judgment, intellect, learning, and imagination. This study is called a retrospective review because the researchers did not actually examine anyone. Instead they reviewed data from records of 32 older adults who had been examined for memory Read More »

Editor’s note: In this case report of infants with severe malabsorption from celiac disease, the treating physicians found copper deficiencies based on blood studies that showed severe low copper levels and white blood cell count.  Treatment required copper supplementation in addition to the gluten-free diet.  Normally, in the last few months of gestation, an infant  stores a large amount of copper in their liver.  This storage must last about 6 months because infants must derive their nourishment from copper-poor milk.  This case report shows dramatically the terrible effect of malabsorption coupled with a naturally occurring huge demand for copper that could not be satisfied through digestion. Read More »