Many of us hear the term “gluten free” and scratch our heads. Grocery store shelves are filled with “gluten free” products. And, while for some going “gluten free” is a simple diet choice, for others with Celiac disease it is a dire health concern.
Celiac disease affects about one percent of the US population. It is rare and there is no cure, so treating the disease with dietary changes is critical to overall health.
Bridget Shea, RD, a registered dietician at the University of Vermont Medical Center, offers information, tips, and shares a very personal experience with us.
What is celiac disease?
Celiac disease is an autoimmune disease that causes an abnormal immune reaction to gluten, a protein found in wheat, rye, and barley.
An autoimmune disease is one in which the body’s immune system malfunctions and attacks its own tissues. In the case of Celiac disease, the immune reaction takes place in the small intestine, and leads to damage to the nutrient-absorbingvilli, which are part of the lining of the small intestine.When this damage occurs, nutrients are not absorbed normally, and both macro and micro nutrient deficiencies can occur.
Although damage by the immune response occurs in the intestines, it can affect the whole body and lead to a wide range of symptoms.
Celiac disease is not a food allergy with an immediate immune response. Instead, it’s a disease where a certain type of antibodies are created in response to gluten. Through a cascade of reactions, immune cells are activated and create chemicals called cytokines, a group of proteins involved in cell signaling. In Celiac disease, cytokinescause damage to the intestines and promote inflammation. That’s the basis of the damage caused by Celiac disease.
Who is at risk for Celiac disease?
Celiac disease is an inherited condition. People with a first degree relative who has Celiac disease are more likely to have it. They have about a one in 10 chance of developing Celiac disease versus the general population where the odds are one in 100.
When you have Celiac disease, you’re at increased risk for developing other autoimmune conditions, and vice versa. Someone with rheumatoid arthritis, or type I diabetes is more likely to have Celiac disease. Also, if someone is older, when they’re diagnosed with Celiac disease, they’re more likely to develop another autoimmune condition.
What is the difference between Celiac disease, being “gluten free,” and having gluten intolerance?
Celiac disease is the autoimmune condition with no cure. The only treatment is the gluten-free diet.
Gluten intolerance or gluten sensitivity is not an autoimmune disease. We’re still learning about what gluten sensitivity is, and what is going on when there is a reaction to gluten that’s not caused by Celiac disease. What we do know is that people who seem to have gluten sensitivity, have similar symptoms, but do not have that classic damage to the small intestine, or characteristic abnormalities in their lab values when they’re checked.
There are people who choose to follow a gluten free diet by choice. There’s a lot of information online and in the media about different reasons you might do that — for inflammation, or to control different conditions — but, there really isn’t a lot of solid evidence yet that any of those conditions improve by removing gluten from the diet. That being said, elimination diets with the guidance of a dietitian can be a great way to figure out how any food, including those with gluten, affects your body or specific symptoms.
What are the signs and symptoms of Celiac disease?
The signs range from mild to severe, and are different in children and adults. They vary wildly from person to person.
In adults, the most common symptoms are diarrhea, fatigue, and weight loss. Other GI symptoms include bloating and gas, abdominal pain, vomiting, constipation. In more than half of adults who are diagnosed with Celiac disease, they present with symptoms that are not digestive at all. These symptoms could include anemia caused by iron deficiency, osteoporosis, infertility, joint pain, mouth ulcers, damaged teeth, enamel, headaches, skin problems, and nervous system problems. That’s what makes Celiac disease hard to diagnosis. There are so many symptoms and they can present in a lot of different ways.
In children, malabsorption due to damage to the intestine can impact growth and development, which can lead to additional symptoms not seen in adults. Typical symptoms include vomiting, chronic diarrhea, abdominal distension, poor appetite and muscle wasting, and irritability, diarrhea, constipation, short stature, and neurological conditions.
Nutritionally, vitamin and mineral deficiencies can occur due to the reduced absorption in the gut, and the nutrients of primary concern are calcium, iron, zinc, B-12, vitamin D, and vitamin K. Chronic diarrhea, depending on how severe it is, may cause issues with electrolytes, and mineral deficiencies.
How do you get a diagnosis?
The first step is a blood test. A doctor will try to rule out other diagnoses and they might suggest a referral to a dietitian to see if there are other dietary things happening that might be the more likely cause for the symptoms.
You recently had a personal experience with Celiac disease. Could you tell us more about that?
My father was diagnosed with Celiac disease about 25 years ago, long before most people had ever heard of it. Later, my older brother was also diagnosed with it. So, I had a fairly good handle on the gluten-free diet and Celiac disease before I became a dietitian.
More recently, my son was diagnosed with Celiac disease. Henry had a lot of the classic symptoms, but they came on very gradually, so it was really difficult for us to pinpoint their cause. He appeared to be holding bowel movements to the point of constipation, which is common in children. That was his main symptom. Then came lethargy, complaints of joint pain, worsening abdominal distension, decreased appetite, and weight loss.
He experienced a lot of symptoms that could be explained by chronic constipation. But then he became increasingly withdrawn, which was concerning to me, and irritable, really clingy at daycare drop off, which he had never been before, and just disinterested in playing because he was tired.
Along the way I questioned Celiac disease because of my family history. When he started vomiting, I pushed for the blood test and it came back positive and that showed that he was also anemic.
Unfortunately, the disease had progressed pretty far at that point. About a week after being diagnosed, he was admitted to the UVM Children’s Hospital with a pseudo bowel obstruction caused by the undiagnosed Celiac disease. That is a very rare, and very severe presentation of Celiac disease. It doesn’t happen often, but it does illustrate how the disease can manifest itself when it’s not treated properly.
After being in the hospital and figuring out what was going on, he has been on a gluten-free diet and a reduced lactose diet, which is most likely temporary. He’s doing great; it’s almost as if it never happened.
How do we treat Celiac disease?
At this point the only treatment is a gluten-free diet. That means avoiding wheat, rye, and barley. Gluten is in so many foods that we wouldn’t think about, like sauces, marinades, candy, ice cream, beverages, and deli meat. Also medications, supplements, and even beauty and personal hygiene products like lipstick, toothpaste, and lotions. Supplementation or infusions may also be prescribed. My son had iron infusions.
Other treatments might be based on symptoms like diarrhea, or reflux. Those can be treated with medications as well.
Some people develop transient lactose intolerance because of the damage to their intestine, and need to be on a lactose-free diet while their gut heals. Usually, it’s only indicated for the short-term and they can eventually start eating lactose again.
Some people diagnosed with Celiac disease who start a gluten-free diet see results rapidly, like within 48 hours. Over half will feel better within a month. Typically, it takes up to a year to achieve clinical remission.
Resources for People With Celiac Disease
- Central Vermont Medical Center holds a support group on the second Wednesday of the month from 4-5 pm in Montpelier.
- org and National Celiac Association (nationalceliac.org) provide information about everything from hidden sources of gluten to label-reading tips to information about support group meetings and national conferences.
- The University of Chicago Celiac Disease Center sends an Educational Essentials Kit to people who have been diagnosed via a biopsy within the past 12 months.
- Beth Israel Deaconess Medical Center’s Celiac Center and The Center for Celiac Research and Treatment at Massachusetts General Hospital both have many free resources ranging from sample GF meal plans to fact sheets about the GF diet including cost saving tips and adding fiber to a GF diet .
- The Gluten-free Scanner is helpful when shopping or trying to determine if a food with a package and barcode has gluten. Find Me Gluten Free is an app that helps locate restaurants with GF options.
- Magazines like Gluten Free Living and Gluten Free and More are helpful for recipes and tips.