Celiac Disease
Celiac disease is an inherited autoimmune disorder in which the body reacts to the protein gluten. Ingestion of gluten causes the body to produce antibodies against it. The antibodies in turn cause damage to the mucosal lining of the small intestine leading to nutritional deficiencies.
Important facts to know:
Celiac disease runs in families and is an inherited autoimmune disease where the presence of the protein gluten triggers an immune response (Celiac disease…, 2022). About 97% of people with this autoimmune disease have an associated recognizable gene mutation and people with a first degree relative with Celiac disease have a 1 in 10 risk of developing celiac disease (Celiac disease…, 2022). The disease itself can develop at any age after individuals start consuming gluten, but it is most commonly developed between 8 and 12 months or in mid-life between 40 and 60 years of age (Celiac disease…, 2022). Additionally, it has been found to develop after periods of significant physical or emotional stress (Celiac disease…, 2022).
What is gluten?
Gluten is a protein found in wheat, rye, barley, triticale. Oats often contain gluten as well due to being grown next to wheat and barley in fields and should be avoided unless labeled as gluten-free oats. Gluten is a sticky protein that helps food maintain its shape, acting as a glue, and is found in many products one would not consider wheat being in. This is also why it is always important to double-check labels. It is also crucial to note that only a small amount of gluten is needed to trigger a response in the body, so it is important to avoid cross-contact. An example might be using a cutting board where there was contact with gluten, as this can still trigger intestinal damage.
Symptoms to be mindful of:
Can range from very mild vague symptoms of nutritional deficiencies, like anemia, once intestinal damage has been done to significant gastrointestinal (GI) symptoms (Celiac disease…, 2022).
GI symptoms can include: stomach pain, bloating, gas, constipation, diarrhea, and/or fatty stools (Celiac disease…, 2022).
Iron-deficiency anemia symptoms can include: weakness, fatigue, paleness, cold hands, brittle nails, headaches, and/or mouth sores (Celiac disease…, 2022).
Malnutrition symptoms can include: unintended weight loss, growth delays or failure to thrive in children, muscle wasting/low muscle tone, dental defects, abnormal periods, difficulty getting pregnant, mood changes such as irritability in children, and mood changes such as depression in adults (Celiac disease…, 2022).
Skin symptoms may manifest as Dermatitis herpetiformis, seen in about 15% of those living with this autoimmune disease. Often they will develop clusters of bumps or blisters that are very itchy, typically found on elbows, knees, buttocks, and/or scalp (Celiac disease…, 2022).
When left untreated/undiagnosed it can lead to:
Early-onset osteoporosis or osteopenia
Gall bladder malfunction
Heart disease
Infertility and miscarriage
Iron deficiency anemia
Lactose intolerance
Liver failure
Malnutrition
Neurological symptoms including: ADHD, headaches, lack of muscle coordination, seizures, ataxia, dementia, neuropathy, myopathy and multifocal leukocephalopathy
Pancreatic insufficiency
Small intestine cancer and non-Hodgkin lymphoma
Vitamin and mineral deficiencies
Other autoimmune diseases
Testing and diagnosis:
There are two primary methods for diagnosis, a blood test and an endoscopy, and typically both are used to diagnose Celiac disease.
The blood test helps identify if there are any gluten antibodies present that can damage your intestine.
The endoscopy is a procedure that allows them to take a small biopsy of your small intestine. The biopsy allows them to examine the tissue under a microscope to observe for damage done by the antibodies.
It is important that you have been eating gluten regularly at the time of these tests, so if you think you may have celiac disease, do not start the gluten-free diet until you see your provider and go through the diagnostic testing. If you start the gluten free diet prior to testing you risk getting false negative test results.
After confirming that you have Celiac disease your provider may test you further for specific vitamin and mineral deficiencies such as iron deficiency, vitamin D deficiency, and calcium deficiency to further guide your dietary recommendations and treatment and management.
Treatment:
The only treatment for Celiac disease right now is life-long strict adherence to a gluten-free diet. Even ingestion of small amounts of gluten in the form of crumbs of cross-contact by using cutting boards or a toaster that is shared with gluten containing foods can trigger immune reaction that leads to intestinal damage, so strict adherence to a gluten-free diet and this awareness is essential.
Once diagnosed it is critical to maintain a gluten-free diet even if you do not have significant symptoms as continued exposure to gluten causes continued production of antibodies, which in turn continue to cause damage to the small intestine.
Poor adherence to a gluten-free diet can lead to other diseases/ health issues.
Starting a gluten-free diet can feel overwhelming but there are many resources out there to help navigate eating gluten-free at home and on the go.
Non-Celiac Gluten Sensitivity: (NCGS)
You may have heard the term non-celiac gluten/wheat sensitivity. Some people experience similar symptoms found in Celiac disease despite testing negative for Celiac disease. However, once they remove gluten from their diet their symptoms do improve. So what do these people have? Until recently it was thought they didn’t develop the same GI damage as those with Celiac disease, but a study by Columbia University Medical Center in 2016 confirmed that those with NCGS/NCWS do develop systemic immune reactions and accompanying intestinal damage.
At this point in time research has not determined that the gluten protein is the issue for this population. There are other possible triggers like fructans (found in FODMAPs) or amylase-trypsin inhibitors (ATIs) that contain gluten and could be the culprit instead. This is why there is another term for this group at this time. Until we know more and have a clear understanding as to the exact trigger for this group, they can be labeled has having a “sensitivity.” It is believed that this intolerance can be triggered by gastrointestinal infections, medications, and surgery.
Supportive resources for Celiac disease:
1) The Celiac Disease Foundation has a helpful app for your phone, and you can access their website by clicking on the link below:
2) Beyond Celiac has a helpful and supportive website, which you can access by clicking on the link below:
3) Gluten Dude has a helpful app and blog that can help you live a gluten-free lifestyle, and you can access it by clicking on the link below:
4) For extra support when eating and even eating out, you can find another helpful app and website by clicking on the link below:
Written by: Mallory Stanislawczyk, CRNP, Pediatric Advisor
Sources:
1) Celiac disease: Symptoms & how it’s treated. (2022, December 1). Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/14240-celiac-disease
2) Non-celiac gluten/wheat sensitivity. Celiac Disease Foundation. (n.d.-a). https://celiac.org/about-celiac-disease/related-conditions/non-celiac-wheat-gluten-sensitivity/
3) What is celiac disease?. Celiac Disease Foundation. (n.d.). https://celiac.org/about-celiac-disease/what-is-celiac-disease/