Affliction from Within: Celiac Disease in the Jewish Community

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Gluten-Free

Part one in a two part series. Next week’s feature article will include The Kosher Celiac, Safety in the Kitchen, Cooking Gluten-Free, Gluten-Free Recipes and additional useful websites

Please note: Shira Galston is a freelance kosher food writer. The Orthodox Union makes no endorsements or representations regarding kashrut certification of various products/vendors referred to in her articles, blog, or web site.

Jewish Genetic Disorders

For many, affliction comes from within – from the most basic blueprints of our physical selves. Jewish genetic diseases are widespread and well-known among the population; they can cause extreme long-term hardship, pain and suffering for patients and their families. Breakthroughs in medical technology and genetic analysis have significantly altered the healthcare landscape in terms of diagnosis and treatment options. Today, there are more than 1600 genetic tests available and that number will only continue to increase.

About 15-20 diseases are known to be highly prevalent in the Ashkenazi population, including Cystic Fibrosis – affecting the lungs and digestive system (1), and Tay-Sachs – affecting the brain and nervous system (2). There are also a small handful of Sephardic genetic diseases, including Beta Thalassemia (a blood disorder), and Familial Mediterranean Fever (a condition resulting in dangerous inflammation affecting the kidneys). In an effort to prevent these diseases in subsequent generations, organizations like Dor Yesharim conduct anonymous genetic testing for Jewish men and women of dating age to screen for couples who may have a high likelihood of producing children with resultant anomalies.

While genetic disorders can target all systems of the body, many aspects of Jewish genetic conditions affect digestion. Gastrointestinal dysfunction usually requires major dietary restrictions, and can lead to malnutrition, severe illness, and death if not diagnosed and treated correctly. Some examples of Ashkenazi genetic disorders with gastrointestinal effects are Cystic Fibrosis, Glycogen Storage Disease Type 1a, and MSUD, among others.

Celiac Disease – Overview

For those who didn’t know, May is Celiac Awareness Month; Celiac Disease is one of the most well-known gastrointestinal genetic diseases. One in 133 Americans have this condition, with 95% of these individuals undiagnosed (3). This means that almost three million Americans have celiac and only about 100,000 are aware of it (4). While celiac does not specifically target the Jewish population, it is more common in Caucasians of European ancestry which overlaps with Ashkenazim. Thus, a high percentage of Ashkenazi Jews are afflicted with this disease (5).

Celiac prevents the body from digesting gluten, which is a protein found in wheat, barley, and many varieties of oats. In any autoimmune disorder, the body’s immune system will attack itself instead of defending against dangerous pathogens. In celiac, gluten will trigger the immune system to damage the lining of the small intestine so that nutrients cannot be absorbed and food is unable to be digested, resulting in serious health effects. Left untreated, celiac can cause malnutrition and further complications such as osteoporosis, thyroid disease, and cancer (3).

Symptoms & Diagnosis

Symptoms of celiac can develop at any point in life. Common symptoms include: abdominal pain or indigestion, constipation, decreased appetite, diarrhea, lactose intolerance, nausea, vomiting, and unexplained weight loss (6). Less well-known is the fact that symptoms can also be neurological, mimicking Multiple Sclerosis: numbness, tingling, headaches, dizziness, etc…(7)

Because symptoms of celiac can be mistaken for other illnesses, people often suffer from long-term misdiagnosis. Ben Friedman*, a 24 year old yeshiva student, was finally diagnosed with celiac four years ago after six months of misdiagnoses, wrongly prescribed antibiotics, and two endoscopies. When Ben eats gluten, “my symptoms vary,” he says, “but I will often vomit and in subsequent weeks I develop various spots and rashes. I’ve once been hospitalized for dehydration simply because my body couldn’t keep anything down.”

Definitive testing for celiac is performed by taking a blood sample and a small tissue sample from the first part of the small intestine through upper endoscopy; surgery is not required. Genetic testing can also determine who is at risk, and can help solidify a diagnosis.

A Restrictive Diet

For someone newly diagnosed with celiac, eating is like entering a battleground. One must be constantly aware of each food ingredient, and others must be careful when cooking for and serving someone with celiac. While celiac cannot be cured, the symptoms can subside and the intestines can heal if the patient follows a lifelong diet of no wheat, barley, rye, and most oats. Doctors may also prescribe vitamins and minerals to correct nutritional deficiencies.

Gluten-free eaters must carefully read each food label, speak frankly with each waiter or chef, and examine medications and other hidden sources of gluten. As the general public and medical profession become more aware of the disease, companies and restaurants are improving at monitoring and labeling their foods.

Federal Standards

As of yet, no federal standard exists for the “gluten-free” label. The FDA has “…not objected to the use of the term “gluten-free” in the labeling of foods, provided that when such a claim is made, it is truthful and not misleading” (8). Many are wary of this ambiguity since food companies may be more interested in profit than gluten vigilance. Also, oats will not be on the list of prohibited grains in the FDA’s proposed definition of “gluten-free”, because there is no consensus among experts that oats need be excluded from a gluten-free diet. celiac consumers must be aware of the possibility of shared factories, hidden glutinous ingredients such as licorice, soy sauce, and dairy substitutes, and companies that do not know or care about their plight.

For part 2 click here.

*Names have been changed

References

  1. http://www.jewishgeneticdisordersuk.org
  2. http://www.jewishgenetics.org
  3. http://www.celiaccentral.org
  4. http://www.shabtai-gourmet.com/?page=education
  5. http://www.barnesjewish.org
  6. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001280/
  7. http://whatisceliacdisease.com/neurological-symptoms-of-celiac-disease
  8. http://www.fda.gov/Food/LabelingNutrition/FoodAllergensLabeling/GuidanceComplianceRegulatoryInformation/ucm111487.htm

Shira Galston is a contributing writer for GourmetKosherCooking.com, a popular Kosher recipes website and blog. She is currently studying in Jerusalem with her husband.

The Orthodox Union endorses many gluten-free products. To read other OU articles on the subject of Celiac’s and gluten-free, please visit Behind the Union Symbol Summer 2008 where you can download copies of “Good News for Gluten- Free Consumers: Now You Can Have Your Cake & Eat it Too!”, “Gluten-Free Flour Power: Celiac Sufferer helps Others by Helping Herself”

The words of this author reflect his/her own opinions and do not necessarily represent the official position of the Orthodox Union.