Gluten-Related Disorders: Celiac Disease vs. Non-Celiac Gluten Sensitivity

When I talk to clients about gluten-related disorders (GRDs), they usually want to dive right into a gluten-free diet. I will help you start doing that in the next blog, but we should first discuss the different kinds of GRDs and their identification, because it is important to NOT be avoiding gluten in order to make the diagnosis.

I know, I am suggesting eating gluten right now when you are pretty sure gluten is causing you all kinds of negative symptoms. Bear with me…
 
A GRD is a condition in which the body reacts to gluten in the diet. In other word, consuming (eating, drinking, absorbing) gluten causes problems; it may trigger a wide spectrum of symptoms or it may be present without symptoms. It may affect the digestive system, or it may be completely unrelated to the gut. It is estimated that at least 5% of the population has some type of gluten-related disorder. I personally believe the impact is much higher, as many people have not been properly diagnosed.
 
GRDs include Celiac Disease, Gluten Ataxia, Non-Celiac Gluten Sensitivity and Wheat Allergy. This blog will just focus on Celiac Disease and Non-Celiac Gluten Sensitivity.
 
Celiac Disease may first develop in children or adults. It is an autoimmune disorder in which gluten damages the lining of the small intestine. With an autoimmune disorder, the immune system (which is usually a great defense against infection and disease) malfunctions, and it attacks healthy parts of the body. Type 1 diabetes and lupus are other examples. In Celiac Disease, gluten triggers the immune system activity of the digestive tract, which can cause poor absorption of nutrients and a variety of symptoms. There are more than 200 symptoms (but remember, many people do not have any!).

• Common symptoms include chronic/ongoing diarrhea, constipation, vomiting, abdominal pain, bloating, poor appetite, and vitamin or mineral deficiencies such as iron deficiency anemia. Children are likely to have these symptoms along with poor growth and delayed puberty. In older children and adults, those symptoms may occur but there are often signs not related to digestion, such as fatigue, joint pain, skin rash, loss of tooth enamel, bone density weakness, tingling in fingers, legs, or feet, and even infertility or miscarriage.
• Diagnosis is important in order to manage celiac disease properly. Autoimmune disorders are often difficult to diagnose, and some people deal with them for years before being diagnosed or treated. With celiac disease, the danger of delaying a diagnosis means nutrient deficiencies, physical problems, and even mental or emotional struggles. Diagnosis must begin with a doctor visit and a blood test. But note: in order for the blood test to be accurate, you must be consuming gluten. If you have eliminated gluten, you will get an inaccurate test. You should be eating gluten containing foods for at least two weeks to have an accurate diagnosis. Make your appointment now and then read more about testing here: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/
  

​Non-Celiac Gluten Sensitivity is a condition in which the body reacts to and rejects gluten without the presence of Celiac Disease. Studies show that the immune system plays a role, but the process isn't well understood. It may first develop in children or adults, and has also been called Gluten Intolerance. Although Non-Celiac Gluten Sensitivity (NCGS) is more common than many people realize, it often goes undetected because the gluten-free weight loss and clean-eating crazes have diminished its credibility. It is more difficult to diagnose than celiac disease because blood tests and physical exams often seem normal. Well, “normal” is up for debate. I have had many professional conversations with medical doctors, including gastroenterologists, who say they are always surprised by what patients think is “normal” - the symptoms they ignore for months or years. It may be very beneficial to start keeping a symptom journal, which I will discuss in the next blog.

• Symptoms often include many of the same as celiac disease, including abdominal pain or bloating, diarrhea or constipation, skin problems, fatigue, and/or joint pain. Headache, brain fog, and depression or malaise are also common. Personally, I experienced a deep, deep fatigue and mental fogginess that is difficult to describe; I thought was the result of poor sleep, nutrient deficiencies, or the COVID pandemic, but a food/symptom journal helped me pinpoint the cause.
• Diagnosis of NCGS can only occur after you rule out Celiac Disease, so get that taken care of first. If you test negative for Celiac Disease, but feel you may be reacting to gluten, please take the time to figure out if you have NCGS. It is diagnosed by a process of elimination, in which you eliminate all gluten in your diet and then slowly add it back while watching for symptoms. It can be difficult, so I recommend you work with a registered dietitian nutritionist for assistance. I also recommend you stay tuned for my next blog, in which I will describe the process and walk you through how I did it.

What to do: Start a journal or diary where you write down everything you eat and drink, as well as any symptoms you have throughout the day. You can do this throughout the day, in the evening before bed, or first thing in the morning while you enjoy your first cup of coffee. Details on keeping this journal – next blog.

Next up: Keeping a symptom journal.
 
Resources: Further description is really beyond the capacity of this blog (unless you want to be reading for hours, which defies the purpose of a blog) but as promised, I will also provide you with recommendations and resource for further reading! If you want in-depth information on the science of gluten-related disorders, I recommend these two publications:
Clinical and Diagnostic Aspects of Gluten Related Disorders
Gluten and Associated Medical Problems

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