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Celiac Disease: Symptoms, Tips, and More

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Celiac Disease: Symptoms, Tips, and More

Resolutions are often made in the cold winter months, but there isn’t really a specific time of year that we should commit to better wellness habits. Change can occur each day, and it can in fact be the small decisions we make on a daily basis that truly change the course of our health. In my case, it was an innocent inquiry at an endocrinology visit four years ago that resulted in a new diagnosis of celiac disease.

I didn’t have the classic symptoms, but merely a family history of celiac. My endocrinologist at the time wasn’t sure insurance would cover the test based on my lack of reported symptoms, but I insisted on having it. I’m not sure what really prompted me to inquire at that particular visit, but had I not, I would have gone months or longer with continued damage to my small intestines.

As my story illustrates, it is important for all of us to ask questions at our visits with health care providers and to advocate for ourselves. The daily changes we make and the questions we ask matter. There is really no need for big New Year’s resolutions — a commitment to wake up each day and make decisions in the present moment to take better care of ourselves can have an even greater impact.

This column reviews some of the most common questions I get from clients about celiac disease, and Pam Cureton, RDN, LDN, who has specialized in treating clients with celiac for much of her career, provides some great resources and tips.

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What is celiac disease, and am I at higher risk if I have diabetes?

Celiac is a genetic, autoimmune condition in which eating gluten, a protein found in wheat, barley, rye, and triticale (a hybrid of wheat and rye) causes damage to the small intestine. In the United States, about 1% of the population (roughly 3 million people) is affected by celiac disease, but 97% are undiagnosed. People with type 1 diabetes have a higher prevalence of celiac disease, with about 6% of those with type 1 estimated to also have celiac. According to the Celiac Disease Foundation, many people with both conditions may have asymptomatic celiac disease, or their symptoms may mistakenly be attributed to diabetes. Celiac disease screening is recommended soon after a diagnosis of type 1 diabetes. There is currently no established link between celiac and type 2 diabetes.

What is asymptomatic celiac disease?

Celiac affects different people in different ways. According to the Celiac Disease Foundation, there are more than 200 symptoms of celiac disease that impact the digestive system as well as other parts of the body. The World Gastroenterology Organisation divides the condition into two types, classical and non-classical.

Classical

People with this variety will often present with signs and symptoms of malabsorption, including diarrhea, steatorrhea (fatty stool), iron-deficiency anemia, weight loss, or growth failure. Interestingly, infants and children are more likely to have digestive symptoms such as abdominal bloating and pain, chronic diarrhea, vomiting, constipation, growth failure, and weight loss, while adults are less likely to experience digestive symptoms.

Adults: Common signs and symptoms

  • Chronic diarrhea
  • Weight loss
  • Iron-deficiency anemia
  • Abdominal distension due to bloating
  • Malaise and fatigue
  • Edema (swelling)
  • Osteoporosis (weak and brittle bones)

Children: Common signs and symptoms

  • Failure to thrive, weight loss, growth failure
  • Vomiting
  • Chronic diarrhea
  • Abdominal distension due to bloating
  • Iron-deficiency anemia
  • Muscle wasting
  • Edema
  • Irritability/unhappiness

Nonclassical

People with this variety often present with non-specific gastrointestinal symptoms without signs of malabsorption.

Possible signs and symptoms include

  • Abdominal distension
  • Abdominal pain
  • Chronic fatigue
  • Chronic constipation, in children
  • Chronic migraine
  • Dermatological (skin) manifestations
  • Peripheral neuropathy (nerve damage)
  • Folic acid deficiency
  • Reduced bone density
  • Unexplained infertility
  • Dental enamel defects
  • Depression, anxiety, moodiness, and irritability
  • Vitamin B12 deficiency

Eating a gluten-free diet is the treatment for celiac disease regardless of whether someone has the classical or nonclassical variety of the condition. Research has suggested that even those who have asymptomatic celiac disease typically experience an improvement in their quality of life from following a gluten-free diet.

Top tips for navigating celiac

Pam Cureton, RDN, LDN, is a clinical and research dietitian who has spent much of her career working in the area of gluten-related disorders. She is the author of many articles and patient education resources on celiac disease and the gluten-free diet. Here, she provides some of her top tips on navigating celiac disease and the gluten-free diet.

Do not start on a gluten-free diet until tested.

The biggest mistake Cureton wants people to avoid is adopting a gluten-free diet before diagnosis. Starting a gluten-free diet prior to testing can prevent receiving a correct diagnosis and accurate test results. Typically, celiac disease testing starts with a blood test, followed (if positive) by an upper endoscopy and biopsy of the lining of the small intestine. Avoiding gluten prior to this testing can prevent antibodies from showing up in the blood test and eliminate the signs needed for diagnosis in the endoscopy and biopsy.

Work with a registered dietitian to manage both diabetes and celiac.

Cureton notes that many clinics do not have a lot of resources available for adults newly diagnosed with celiac disease, which is why it is so important to find a registered dietitian (RD) in your area. If you don’t already have an RD working with you on your diabetes management, she suggests finding one who is willing to help you with both diabetes and celiac management. An RD can be an invaluable resource who provides evidenced-based information, answers questions, and gives you personalized guidance to meet your specific needs. You can find one in your area through the Academy of Nutrition and Dietetics website at eatright.org.

Use trusted and reliable resources.

Cureton suggests focusing on getting your information from trusted organizations versus simply Googling gluten-free eating, which could bring up a variety of sources that may or may not provide accurate information. Some of her favorite trusted resources include:

Websites:

Books:

  • “The How Can It Be Gluten-Free Cookbook,” by America’s Test Kitchen
  • “Gluten Free: The Definitive Resource Guide,” by Shelley Case
  • “Gluten-Free Diet Guide for Families,” by GI Kids (A free downloadable e-book)
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Gluten-containing ingredients

Make sure you are aware of gluten-containing ingredients. Memorize this list of six common gluten-containing ingredients to help you navigate gluten-free eating. (Please note this is not a comprehensive list of ingredients that contain gluten.)

  1. Wheat
  2. Rye
  3. Barley
  4. Malt
  5. Brewer’s yeast
  6. Oats (Oats are naturally gluten free, but cross-contamination is a big concern with this grain. If you will be eating oats, look for a variety that is specifically labeled gluten free.)

Want to learn more about the gluten-free diet? Read “Type 1 Diabetes and Celiac Disease” and “Myths and Facts About the Gluten-Free Diet” and visit our sister site, glutenfreeliving.com.

Alison Massey, MS, RDN, LDN, CDCES

Alison Massey, MS, RDN, LDN, CDCES

Alison Massey, MS, RDN, LDN, CDCES on social media

A Registered Dietitian and Certified Diabetes Care and Education Specialist with over a decade of experience in various community and clinical settings, Massey is currently owner of Flourish Nutrition Therapy & Wellness, a private practice focusing on providing nutrition and diabetes education. Working with the media is Massey’s favorite way to share her wealth of nutrition and diabetes knowledge with the general public and she is often featured in various Maryland media outlets. She received her Bachelor of Science in Nutrition Science from the Pennsylvania State University and Master of Science in Health Promotion from the University of Delaware.

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