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Understanding Celiac Disease: The Serious Condition Behind the Gluten-Free Craze

“Gluten-Free!” has become the marketing rally cry, from grocery store shelves to restaurant menus, and it seems that everyone has jumped on the bandwagon. You’ll see the gluten-free sign on everything from rice cakes (which are naturally gluten-free) to toothpaste, hand lotion, and shampoo. Many people want to eat a gluten-free diet, even though they aren’t gluten intolerant. But for those with celiac disease, gluten is a huge problem that can make them very sick and possibly lead to further medical complications. In recognition of Celiac Disease Awareness Month, we’ll examine exactly what celiac disease is, how to know if you have it, the health dangers, and how to treat it.


What is Celiac Disease?

Celiac disease, also called gluten-sensitive enteropathy or celiac sprue, is a serious genetic autoimmune disorder. When people with celiac disease consume gluten, a protein found in various foods, they may develop digestive disorders as well as other symptoms. Additionally, gluten will cause damage to the small intestine.

In celiac disease sufferers, the body’s immune system overreacts to the gluten in the food, and this damages the hair-like projections called villi that line the small intestine. Villi perform a critical function in the body by absorbing nutrients. People with celiac disease who have damaged small intestines are not able to absorb important nutrients such as vitamins, protein, carbohydrates, fats, and calcium. No matter how much they eat, their body will be starved of vital nutrition. They are gluten intolerant and must avoid all foods that contain wheat, barley, and rye to heal intestinal damage and remain symptom-free.


Celiac Disease Causes and Statistics

According to Beyond Celiac, an estimated 1% of the U.S. population has celiac disease, and it’s believed that as many as 83% of those who are afflicted with the disease are undiagnosed or have been misdiagnosed with other conditions.  While the precise cause of celiac disease isn’t known, it is thought that genetic predisposition, eating foods with gluten and other environmental factors all play a part. Gastrointestinal infections, bacteria in the gut, and early feeding practices may also be involved in the development of a celiac disorder.

It’s possible for a person with celiac disease to not even know that they have it, until an event in their life triggers it. This can happen after pregnancy, childbirth, a viral infection, surgery, or severe emotional stress.


Who is at Risk for Celiac Disease?

Celiac disorders can affect people of all ages and all races. However, the disease is more commonly found in Caucasians and is most often diagnosed in women. An individual is more likely to develop celiac disease if someone in their family has it, or if they have dermatitis herpetiformis (DH), which is a blistering, itchy skin rash that’s a manifestation of celiac disease. The disorder is also more frequently seen in those with other diseases such as type 1 diabetes, Down syndrome, Turner syndrome, rheumatoid arthritis, Addison’s disease, autoimmune thyroid disease, or microscopic colitis.


What Are the Symptoms of Celiac Disease?

Determining if you have celiac disease can be a tricky thing, since there may be other causes of digestive disorders. However, some of the most common celiac disease symptoms are as follows:

Infants and Young Children: (digestive) Abdominal pain, bloating, constipation, diarrhea, vomiting; (behavioral) feeling fretful, irritable, excessively dependent, or emotionally withdrawn. Also, failure to gain weight and tooth enamel damage.

Teenagers: Digestive symptoms, slowed growth and short height, delayed puberty, and hair loss.

Adults: digestive symptoms (though less than in children), fatigue, bone or joint pain, headaches, feelings of poor health, irritability, anxiety, depression, missed menstrual periods, osteoporosis, and iron deficiency anemia.

Other symptoms may include DH (itchy skin rash), canker sores in mouth, and lactose intolerance.


Complications from Celiac Disease

Although celiac disease is due to a problem in the small intestine, the effects go far beyond a digestive disorder. If left untreated, this immune disease may cause serious complications. What occurs with untreated celiac disease is that the condition produces a reaction in which the body’s immune system mistakenly attacks healthy cells elsewhere in the body.

Other complications from celiac disease are due to poor absorption of nutrients. Therefore, it’s very important to see your doctor and obtain a definitive diagnosis if you suspect that you (or your child) might have celiac disease. The chance of developing a related autoimmune disorder increases as time goes by. Type 1 diabetes and thyroid disease are the most common.


Are Celiac Disease Symptoms the Same for Everyone?

Celiac disease is a potentially far-reaching disorder, with symptoms varying from person to person. There are various factors that can determine how your celiac disorder manifests itself. This includes the length of breastfeeding as a baby, how old you were when you started eating gluten and how much you consume, the level of damage to your small intestine, and age. Even if you don’t have symptoms at first, you might still develop complications in the future.


Diagnosing Celiac Disease

Since digestive disorders can be caused by other conditions, celiac disease may be difficult to diagnose from symptoms alone. Gluten sensitivity may cause similar medical problems, such as abdominal discomfort and fatigue, but it doesn’t damage the small intestine. An allergy to wheat will cause symptoms such as itchy eyes or difficulty breathing, but it also won’t damage the small intestine.

Fortunately, there are two blood tests that can indicate if you have celiac disease. Serologic tests look for certain blood antibodies and genetic testing can determine if the person has human leukocyte antigens (HLA), specifically HLA-DQ2 and HLA-DQ8 genes, which rules out celiac disease. This genetic test can also be done with saliva or a cheek swab. If a test comes back positive, your doctor will likely recommend an endoscopy to insert a thin, flexible scope with a camera into the intestinal tract. An endoscopy only takes about 15 minutes. A small piece of tissue may also be taken from the small intestine’s lining (a biopsy) and examined for villi, since damaged villi indicate celiac disease.

In cases of suspected dermatitis herpetiformis, your doctor may recommend a skin biopsy, where small pieces of skin tissue are examined.

If you don’t have celiac disease but do have the same symptoms, you might have non-celiac gluten sensitivity, and the recommendations for managing symptoms will be the same.


Preventing, Treating, and Curing Celiac Disease

Simply put, there’s no way to prevent or cure celiac disease. However, symptoms can be managed by eating a gluten-free diet. Staying away from gluten can also reverse the damage done to the small intestine and will prevent further damage from occurring. If you’ve been diagnosed with celiac disease, prepare to become a label reader! If you eat out often, you might have to question servers at restaurants to ensure that the dish you’re ordering is indeed gluten-free. There are many foods and other products that contain gluten, and any of these can cause problems for those with the condition. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) provides valuable information about adhering to a gluten-free diet.


The Gluten-Free Diet

“No wheat, rye, or barley” may sound simple enough, but these ingredients can be found in many places where you don’t expect them. Additionally, many grains are varieties of wheat, such as spelt, durum, farro, kamut, graham flour, and products like semolina and bulgur. It’s estimated that one in five people with celiac disease have a reaction to oats, which are gluten-free (when not contaminated with wheat) but contain avenin protein, which can be problematic. And barley isn’t just an ingredient found in barley cakes—unfortunately, it’s also in beer.

So, what shouldn’t you eat on a gluten-free diet? WebMD provides an extensive list, but here’s a sampling.

Don’t Eat (or at least, know the ingredients):

  • Most cereals, grains, and pastas
  • Bread, crackers, and pastries
  • Noodles
  • Canned soups
  • Processed or canned meats; luncheon meats
  • Salad dressings, sauces, and gravies
  • Candy bars
  • Instant coffee
  • Soy sauce

There are also foods and other items that surprisingly contain gluten, which you’ll need to be aware of. This can be everything that will or might be licked or swallowed, from Play-Doh to communion wafers. Carefully read labels on medications (gluten may be used as a binder), lip balm and lipstick (may contain a small amount of gluten), toothpaste, mouthwash, vitamins, and supplements. Even shampoo or skin lotion might be a problem. While gluten can’t be absorbed through the skin, a trace amount on one’s fingers can be problematic, since you can then use your fingers to eat something. For celiac babies and young children, this is obviously a concern (which is why Play-Doh is on this list).


Do Eat (but beware of seasonings and additives):

  • Beef, poultry, and eggs
  • Fish and seafood
  • Beans, nuts, and legumes
  • Fruits and vegetables
  • Rice
  • Potatoes
  • Gluten-free grains, such as amaranth, buckwheat (and kasha), chia, corn, flax, millet, potato, quinoa, rice, soy, sorghum, tapioca, teff, and yucca.
  • Foods that are labeled “gluten-free”

If you carefully follow these important guidelines, you should feel better within a few weeks, and maybe even sooner. After you’ve started your new diet, your doctor may recommend certain supplements if you’re deficient in iron, calcium, fiber, zinc, vitamin D, niacin, magnesium, or folate. These are the most common deficiencies for those with celiac disease.


Living with Celiac Disease

While it can be a challenge, keeping oneself free of celiac disease symptoms isn’t impossible. The most important practices are to read food labels, speak up at family gatherings and in restaurants, and find delicious gluten-free recipes to take the place of favorites you must give up. There are many gluten-free resources and celiac disease support groups that can help.
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