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Living with Celiac disease

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Please add the profiles of those with Celiac disease or a Gluten sensitivity.

Coeliac disease, also spelled celiac disease, is a long-term autoimmune reaction to eating gluten found in wheat, barley & rye that primarily affects the small intestine. Over time, this reaction damages the small intestine’s lining & prevents absorption of some nutrients (malabsorption). Classic symptoms include gastrointestinal problems such as chronic diarrhea, abdominal distention, malabsorption, loss of appetite and among children failure to grow normally.

Celiac disease is a genetic disease and the only known cure is a gluten-free diet for life. It affects approximately 1 in 100 people worldwide. Two and one-half million Americans are undiagnosed and are at risk for long term health complications. While most people with celiac disease experience a relief from symptoms while on a gluten free diet, studies are showing an increased mortality rate in patients with the disease compared to the general population.

When people with celiac disease eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body.

Celiac disease is hereditary, meaning that it runs in families. People with a first-degree relative with celiac disease (parent, child, sibling) have a 1 in 10 risk of developing celiac disease. It often begins between six months and two years of age, however, it may develop at any age.

Symptoms:

The signs and symptoms of celiac disease can vary greatly and are different in children and adults. The most common signs for adults are diarrhea, fatigue and weight loss. Adults may also experience bloating and gas, abdominal pain, nausea, constipation, and vomiting.

However, more than half of adults with celiac disease have signs and symptoms that are not related to the digestive system, including:

  • Anemia, usually resulting from iron deficiency
  • Loss of bone density (osteoporosis) or softening of bone (osteomalacia)
  • Itchy, blistery skin rash (dermatitis herpetiformis)
  • Damage to dental enamel
  • Mouth ulcers
  • Headaches and fatigue
  • Nervous system injury, including numbness and tingling in the feet and hands, possible problems with balance, and cognitive impairment
  • Joint pain
  • Reduced functioning of the spleen (hyposplenism)
  • Acid reflux and heartburn

Children under 2 years old, typical signs and symptoms of celiac disease include:

  • Vomiting
  • Chronic diarrhea
  • Swollen belly
  • Failure to thrive
  • Poor appetite
  • Muscle wasting

Older children may experience:

  • Diarrhea
  • Constipation
  • Weight loss
  • Irritability
  • Short stature
  • Delayed puberty
  • Neurological symptoms, including attention-deficit/hyperactivity disorder (ADHD), learning disabilities, headaches, lack of muscle coordination and seizures

Diagnosis It is often very difficult to diagnose, but diagnosis of celiac disease requires a celiac disease panel blood test and an endoscopic biopsy of your small intestine. You MUST be eating gluten in order for the celiac disease panel test to be accurate as it measures your body’s reaction to gluten. A proper diagnosis can only be made by a physician.

Long Term Health Effects

Celiac disease can develop at any age after people start eating foods or medicines that contain gluten. Left untreated, celiac disease can lead to additional serious health problems. These include the development of other autoimmune disorders like Type I diabetes and multiple sclerosis (MS), dermatitis herpetiformis (an itchy skin rash), anemia (esp. iron deficiency anemia), osteoporosis, infertility and miscarriage, neurological conditions like epilepsy and migraines, short stature, intestinal cancers, lactose intolerance, vitamin & mineral deficiencies, pancreatic insufficiency, and gall bladder malfunction to name a few.

Causes:

Celiac disease occurs from an interaction between genes, eating foods with gluten and other environmental factors, but the precise cause isn't known. Infant feeding practices, gastrointestinal infections and gut bacteria might contribute to developing celiac disease.
Sometimes celiac disease is triggered — or becomes active for the first time — after surgery, pregnancy, childbirth, viral infection or severe emotional stress.

When the body's immune system overreacts to gluten in food, the reaction damages the tiny, hair-like projections (villi) that line the small intestine. Villi absorb vitamins, minerals and other nutrients from the food you eat. If your villi are damaged, you can't get enough nutrients, no matter how much you eat.

Some gene variations appear to increase the risk of developing the disease. But having those gene variants doesn't mean you'll get celiac disease, which suggests that additional factors must be involved.

Treatment:

There is NO cure for celiac disease, but currently, the only treatment for celiac disease is lifelong adherence to a strict gluten-free diet, which can help manage the symptoms and promote intestinal healing.

  • People living gluten-free must avoid foods with wheat, rye and barley, such as bread and beer.
    • In addition to wheat, rye & barley, foods that contain gluten include: bulgur, durum, farina, graham flour, malt, semolina, spelt (a form of wheat), and triticale.
  • Hidden gluten can be present in foods, medications and nonfood products, such as:
  • If there are severe nutritional deficiencies, the doctor or dietitian may recommend taking gluten-free vitamin & mineral supplements that include calcium, folate, iron, vitamin B-12, vitamin D, vitamin K and zinc.
  • Reading labels on packaged foods is VERY important, because ingesting even trace or small amounts of gluten, like crumbs from a cutting board or toaster, can trigger small intestine damage. Packaged and other foods that may contain gluten or gluten-containing ingredients include obvious foods such as: cereals, pastas & baked goods, breads, cakes, pies & cookies. Other packaged foods that may contain gluten include: beer, candies, gravies, imitation meats or seafood, processed luncheon meats, salad dressing & sauces, soy sauce, self-basting poultry and soups.
  • Certain grains, such as oats, can be contaminated with wheat during growing and processing. Pure oats are not harmful for most people with celiac disease. In the United States, doctors generally recommend avoiding oats unless they have been specifically labeled gluten-free. Outside of the United States, different labeling laws for oats apply. Occasionally, even pure oats can be a problem for people with celiac disease
  • Foods Allowed:
    • Fresh meats, fish & poultry (NOT breaded, batter-coated or marinated)
    • Fruits
    • Most dairy products
    • Potatoes
    • Vegetables
    • Wine & distilled liquors, ciders & spirits
    • Grains & starches such as: amaranth, arrowroot, buckwheat, corn, cornmeal, gluten-free flours (rice, soy, corn, potato, bean), pure corn tortillas, quinoa, rice & tapioca.
    • Carob is a potential substitute for gluten, but more research is needed about its effect.

Intestinal damage begins to heal within weeks of gluten being removed from the diet, and antibody levels decline over months.

History:

Humans first started to cultivate grains in the Neolithic period (beginning about 9500 BCE) in the Fertile Crescent in Western Asia, and it is likely that coeliac disease did not occur before this time. Aretaeus of Cappadocia, living in the second century in the same area, recorded a malabsorpttive syndrome with chronic diarrhea, causing a debilitation of the whole body. His "Cœliac Affection" (coeliac from Greek κοιλιακός koiliakos, "abdominal") gained the attention of Western medicine when Francis Adams presented a translation of Aretaeus's work at the Sydenham Society in 1856. The patient described in Aretaeus' work had stomach pain and was atrophied, pale, feeble and incapable of work. The diarrhoea manifested as loose stools that were white, malodorous and flatulent, and the disease was intractable and liable to periodic return. The problem, Aretaeus believed, was a lack of heat in the stomach necessary to digest the food and a reduced ability to distribute the digestive products throughout the body, this incomplete digestion resulting in the diarrhoea. He regarded this as an affliction of the old and more commonly affecting women, explicitly excluding children. The cause, according to Aretaeus, was sometimes either another chronic disease or even consuming "a copious draught of cold water."

The pediatrician Samuel Gee gave the first modern-day description of the condition in children in a lecture at the Hospital for Sick Children, Great Ormond Street, London, in 1887. Gee acknowledged earlier descriptions and terms for the disease and adopted the same term as Aretaeus (coeliac disease). He perceptively stated: "If the patient can be cured at all, it must be by means of diet." Gee recognized that milk intolerance is a problem with coeliac children and that highly starched foods should be avoided.

Christian Archibald Herter, an American physician, wrote a book in 1908 on children with coeliac disease, which he called "intestinal infantilism." He noted their growth was retarded and that fat was better tolerated than carbohydrate. The eponym Gee-Herter disease was sometimes used to acknowledge both contributions. Sidney V. Haas, an American pediatrician, reported positive effects of a diet of bananas in 1924. This diet remained in vogue until the actual cause of coeliac disease was determined.

Statistics & Mortality:

  1. Very Well Health - Can Celiac Disease Cause Death? By: Jane Anderson, Reviewed by Emmy Ludwig, MD. Updated 23 Feb 2018
  2. Celiac.com - Increased Mortality Rates for Celiacs. By Destiny Stone. 22 Feb 2010
  3. Celiac Disease Facts & Figures

The rate of celiac disease in Western countries is estimated at about 1 percent of the population. Celiac disease is most common in Caucasians; however, it is now being diagnosed among many ethnic groups and is being found globally.

In the vast majority of cases, celiac disease is not fatal in the way we normally think of fatal diseases—it won't progress and ultimately kill you. However, the news when it comes to celiac disease and death rates is a bit mixed: some studies, but not all, show people are at risk of dying early from other causes when they have celiac.

Still, there's some good news, too: at least one study indicates that people who are more careful in following the gluten-free diet may have a lower risk for early death. That shows you there's something proactive you may be able to do to improve your health and your longevity.

Out of the 21 papers that have been published over the last 25 years addressing the issue of celiac and mortality rates, the studies show conflicting results, ranging from a 0.52% (decrease) to 3.9% (increase) in mortality rates for patients with celiac compared to the general population. The reasons for the conflicting results are based on the fact that the papers vary vastly from each other, and while some studies are location based or population based, others are cohort based. So for the sake of this particular study, celiac patient's have been categorized into four different groups: symptomatic celiac disease, dermatitis herpetiformis, unrecognized celiac disease and refractory celiac disease. Because these groups of celiac patients differ greatly, it is necessary to analyze their mortality rates individually.

Ten papers in five different countries studied mortality in patients with symptomatic celiac, or celiac symptoms that indicate the presence of celiac disease in a patient. All ten papers on the subject came to the same conclusion, patients with symptomatic celiac disease have been shown to have a increased mortality rate. The primary reason for increased mortality in these particular patients was found to be caused by complications from celiac disease like gastrointestinal malignancies such as, non-Hodgkin lymphoma and small bowel cancer. Other conditions that led to increased mortality for these patients included, autoimmune conditions, ischemic heart disease and violence (including suicide and accidents).

Notables with Celiac disease:

  1. Wikipedia - List of people diagnosed with Celiac disease
  2. Probiotics.org - Celebrities suffer from Gluten Allergies - You’re not alone! (20 listed)
  3. IMDB - Celebrities with Celiac Disease & Gluten Intolerance (28 listed) (updated 2 Aug 2014)
  4. Celebrities with Celiac Disease (updated Jan 2012) (23 listed with Celiac disease; 13 listed tied to Gluten-Free Diet)
  • Gordon Banks (1955) - British politician
  • Alyssa Baumann (1998) - American artistic gymnast
  • Amy Yoder Begley (1978) - American middle-distance runner
  • Cedric Benson (1982) - American football player
  • Sarah Joy Brown (1975) - American actress
  • Joe C. (aka Joseph Calleja)(1974-2000) - American rapper; died of complications from Celiac disease
  • Meg Cabot (1967) - American author
  • Jon Christos (aka John Christodoulou)(1976) - English singer
  • Heidi Collins (1967) - American news anchor
  • Jennifer Esposito (1973) - American actress
  • Dennis Hallman (1975) - American mixed martial artist
  • Elisabeth Hasselbeck (1977) - American TV talk show hose
  • Bob Holness (1928-2012) - British radio & TV presenter; died in sleep
  • Claudia Koll (1965) - Italian actress & missionary
  • Tomas R Laughlin Jr (1931-2013) - American actor; died of complications from pneumonia
  • Lisa Kennedy Montgomery ( ) - American political satirist
  • Eve Muirhead (1990) - Scottish curler
  • Michael Oblora (1986) - English actor
  • Adrianne Palicki (1983) - American actress
  • Caroline Quentin (1960) - English actress
  • Mickey Redmond (1947) - Canadian former professional hockey player
  • Emmy Rossum (1986) - American actress
  • Ivete Sangalo (1972) - Brazilian singer
  • Deborah Ann Woll (1985) - American actress

Resources & Additional Reading:
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