By Michael Burkholz, DO

How common is celiac disease? What causes celiac disease?

It may surprise you to learn that one out of every 100 people is affected by celiac disease, many of whom are unknowingly living with the disease. That is a fact worth considering as we approach Celiac Awareness Day Sept. 13.

Celiac disease can develop at any point in life. For those with the condition, it results from an immune reaction to eating gluten – a protein found in wheat, barley and rye – that leads to inflammation and damage to the intestines. Celiac disease impacts numerous other systems and functions within the body and may increase the risk for certain long-term health conditions, including cancers of the gastrointestinal tract and intestinal lymphomas, particularly if the condition is left untreated. Early diagnosis can greatly improve your long-term health results.

So how do you know if celiac disease is something you need to check into?

That is a question I had to ask myself three years ago when I decided to get tested and discovered that I was living with celiac’s disease. For me, it was worth checking into because I was experiencing some of the gastrointestinal (GI) symptoms that are common with celiac disease, as well as some of the symptoms people don’t always associate with the condition.

Common symptoms and risk factors of celiac disease

If you have diarrhea or digestive discomfort that lasts for several weeks or more, it is likely worth requesting the simple blood test that can rule out celiac disease. That discomfort could include: changes in bowel movements; diarrhea or constipation; weight loss; bloating and gas; abdominal pain; and nausea or vomiting.

Other common symptoms that are not related to the digestive system can include: headache and fatigue; joint pain; tingling in the hands and feet; itchy, blistering skin; loss of bone density; gum disease; enamel decay and cavities; mouth ulcers; anemia; and other manifestations of vitamin deficiencies. Even neurological and psychiatric problems and complications may be associated with celiac disease.

If you have a relative with celiac disease or type 1 diabetes, you might also be at a higher risk for developing the condition.

You can request the blood test for celiac disease through your physician. To ensure an accurate test result, it’s important to take the test before making changes to your diet. If you have questions or are experiencing complicated symptoms, you may also want to schedule an appointment with a gastroenterologist, a physician specially trained in the function of the GI tract and liver, so that you can benefit from their detailed knowledge of celiac disease and other GI disorders. If you receive a positive test result, you will definitely want to work with a gastroenterologist to confirm your diagnosis and learn how to manage the disease and any potential complications.

Being diagnosed and living with celiac disease

Having been diagnosed with celiac disease myself, I have come to appreciate the implications of this disease first-hand, and I understand how challenging it can be to live with a GI disease. It has made me more of an advocate for my patients as I help them along their journey, working through their symptoms and helping them to eliminate their pain and discomfort and improve their quality of life.

While there are still misconceptions about celiac disease, public awareness of the seriousness of celiac disease has steadily increased in recent years. Celiac disease is a serious condition that causes serious medical complications and has far-reaching effects on the body.

It’s important for anyone who has been recently diagnosed with celiac disease to recognize that it takes time to completely clear their system of the effects of gluten. That is true even for those who are able to strictly follow the dietary modifications that are key to managing celiac disease, namely eliminating any consumption of gluten. It is also important to work with a provider you trust who understands the disease and can provide you with the information and support you need to manage the condition.

Hope for patients with celiac disease

Unfortunately, many patients with celiac disease try to ‘go it alone’ once they feel like they have a handle on their diet. Because celiac disease has such far-reaching effects on the whole body, and on so many different organ systems, it’s important to stay connected to good care. A gastroenterologist can provide support and oversight and can monitor for the secondary issues that even a well-managed case of celiac disease can cause, such as the effects of micronutrient deficiencies. At a minimum, a patient with celiac disease should be seen by a GI specialist annually or semi-annually.

If you are struggling with celiac disease, remember: You’re not alone. As someone who regularly treats celiac disease, and lives with the disease every day of my life, I can assure you that with the right support and diet, it is possible to live a very normal lifestyle. There are also many resources that your physician can connect you with that offer support and insight into how to optimize your health and quality of life. With early diagnosis and continued treatment, you can live well with celiac disease, and you can thrive.