Disclaimer: Please be aware that I am not a doctor or certified dietary consultant, but just a person sharing information based on research and personal experience. The illustrations depicted are merely visual aides to better explain the processes inside the body. For a one hundred percent anatomically correct and complete depiction, check Google Scholar.
The Symptoms of Celiac Disease Celiac disease is referred to as the “chameleon of illnesses”, because its symptoms are manifold and different for every patient. Common afflictions are diarrhoea, vomiting and a bloated belly in addition to low iron levels or other evidence of malnutrition. Some patients experience constipation, a variation of all sorts of bowel-related discomforts or have no symptoms at all. Some also don’t recognize that something is wrong, given they have never (consciously) experienced their body without celiac disease on a full-blown dose of gluten. In addition, many patients suffer from accompanying illnesses, developed after living with an untreated celiac disease for many years. The reaction to gluten occurs in the small intestine, an organ that lies behind the stomach and is in charge of absorbing nutrients. (For more information on how the intestinal track works, read a very charming book called “Gut” by German Science Slam winner Giulia Enders or a very science-y book with lots of interesting and sometimes creepy stories and anecdotes by Mary Roach called: Gulp. The inside surface of the small intestine is entirely lined with so-called intestinal villi. Villi are tiny, finger-like projections that absorb nutrients and distribute them within the body. Whenever the small intestine of a person with celiac disease comes in touch with gluten, the autoimmune process starts up, stunting the villi over time. After a while, the villi get infected and can also clump. Eventually, the surface available for the absorption of nutrients (about the size of 30 m² in a healthy person’s body) decreases, at worst to the size of the plate of a large dining room table. As a consequence, fewer nutrients are absorbed. Some patients report rashes after ingesting gluten. This is a condition called Hepetiformis During, a rare form of celiac disease, diagnosed with the help of a skin biopsy in the affected regions. The small intestine of these patients is damaged, too, but usually to a lesser degree. For a long these patients were told to abstain from coming in touch with gluten, but today we know the skin issues are caused entirely from within the body and that there is no need for these patients to check the contents a body lotion or shampoo for glutinous ingredients. Depending on the length of time affected, patients develop a myriad of accompanying symptoms and illnesses, such as teeth-related problems, osteoporosis or other autoimmune diseases. Symptoms can even be related to other organs, such as the liver, causing doctors to search for root causes in other areas of the body (as it happened to me). Celiac disease is thus often diagnosed by coincidence, perhaps even after other treatments have failed. The average patient experiences 13 years of discomfort prior to obtaining their celiac disease diagnosis. Celiac disease is diagnosed on the basis of three pillars: Usually, the order is like this: a physician will suspect celiac disease and order a blood sample to be analysed. The patient is then sent off to a gastroscopy with a biopsy of the small intestine, where (ideally) several tissue samples are taken. If both exams are positive, then the patient has celiac disease. Sometimes, the order of exams can vary and it’s irrelevant in which order the patient is examined just as long patients continue ingesting sufficient quantities of gluten throughout the diagnosis stage (the German Celiac Disease Association recommends 15mg of gluten/day). I for example was sent to a gastroscopy and the gastroenterologist was instructed to search for all kinds of root causes, because they did not know what was ailing me. Blood work was only done after the lab report from the gut biopsy came back positive. In patients with untreated celiac disease (= not living strictly gluten-free), certain antibody types increase. More information on these antibodies here. This is why celiac disease is not only diagnosed by means of a gastroscopy (gut biopsy, classification of villi damage according to Marsh-types) but also by the analysis of a blood sample. In the patients blood work, celiac-disease-specific antibodies will show a steep rise. Please note: some patients have a so-called selective IgA Deficiency and thus may not show any higher antibodies. These patients still have celiac disease. Therefore, if you experience gluten-related symptoms and your gastroscopy shows villi-damage, but your blood work is negative, it may be necessary to check for selective IgA deficiency, particularly if celiac disease is prevalent in your nuclear or extended family. Gastroenterologists distinguish between four stages of intestinal villi damage, the so-called Modified Marsh Classification that ranges from 0 to 4. Marsh 0 stands for a non-damaged, healthy gut. Marsh 1 indicates some villi-damage, but (as of when this article was published) is not considered sufficient evidence for a celiac disease diagnosis. Marsh 2 and Marsh 3 (the latter is subcategorized between 3a, 3b, and 3c, each indicating a higher level of damage) is considered sufficient for a strong indication for celiac disease. Marsh 4 indicates total destruction of the villi and (from what I know) is considered a so-called “refractory celiac disease”, a rare type of celiac disease that does not respond to the gluten-free diet. Refractory celiac disease is treated with steroids. Anyway, regardless of the degree of villi-destruction and height of celiac-disease specific antibodies, small intestine damage and lack of nutrients (most commonly low iron levels) eventually begins affecting other organs and the patient may (or may not) start showing symptoms not related to the intestinal track (e.g. liver problems). Thus, for a proper diagnosis (and a definite answer on whether you have celiac disease) both these medical exams need to have been taken place. It is important that people within the diagnostic stages keep ingesting sufficient gluten.. If you quit gluten for a while, then you should be eating gluten for at least ten to twelve weeks, allowing some damage to the intestinal villi and a rise in celiac-disease specific antibodies. In my experience, based on the many, many conversations I have had with fellow celiacs since 2013, only a small percentage of patients are lucky enough to encounter a physician who suspects celiac disease as a cause for certain symptoms. This is in part due to the diverse ways celiac disease manifests itself and also to the lack of knowledge about the subject. Often doctors still refer to ancient facts they learnt many years ago, such as that a person with celiac disease must always meet the following criteria: In addition, some doctors wrongly believe that only children can develop celiac disease (and worse: that celiac disease can be healed). Often they also believe that celiac disease is an extremely rare disease and that the chance of them meeting a patient with celiac disease is thus close to zero. They just don’t have it on their map of potential causes for a patient’s ailment. The truth is that only a small fraction of patients meets the above mentioned stereotype. In fact, a large number of those affected only develop celiac disease after the age of sixty. I’ve met people with celiac disease of all body-types and ages and from all walks of life. I suffered from chronically low iron levels for well over a decade before I met a doctor who suspected that something wasn’t right. Coincidentally she was also a vegetarian. She was the first doctor I met who believed me that I ate healthily and sensibly and that I was doing everything in my power to increase iron levels. After five minutes of talking to her she referred me to a gastroenterologist. Since I’ve gone gluten-free doctors regularly compliment my iron levels. The only cure for the symptoms of celiac disease is a strict gluten-free diet. This is really good news, because our bodies fully recover their health without the assistance of a single pill! The downturn is: once celiac disease is triggered, the autoimmune process is always starts anew as soon as gluten hits the body. Celiac Disease stays for life. Until science finds a solution, we must adhere to a strict gluten-free diet for the rest of our lives. For people with celiac disease Living gluten-free is not only essential, it translates to a higher quality of life. For me, going gluten-free has really been a game-changer. From day one I felt better. As is very common, the first thing that improved were my digestive issues. Throughout the first months following my new gluten-free diet, my overall well-being improved. I felt much less weak and much stronger when going about my daily life. After a year I finally stopped getting sick every time someone coughed next to me on the subway. I felt strong to my very core. Two years after the fact I still felt like I was benefiting from my gluten-free diet in terms of higher energy levels and strength. As is recommended, my celiac disease-specific antibodies are controlled once a year. They now come back negative. This means that all evidence for celiac disease within my body is gone. (If they did a gut biopsy, my Marsh classification would probably be 0. Obviously this does not mean that I go back to eating gluten, just that I am doing a good job at staying strictly gluten-free) Since I’ve gone gluten-free my issues related to malabsorption have also disappear, yay!
Where in the body does Celiac Disease occur?
Special Types of Celiac Disease
Untreated Celiac Disease Causes accompanying illnesses
How Celiac Disease is diagnosed
Blood Work required for a Celiac Disease Diagnosis
Your Blood Work can come back negative, and it can still be Celiac Disease
A Gastroscopy Sheds Light on Celiac Disease
The Knowledge Gap Between You and Your Celiac Disease Diagnosis
Celiac Disease Affects People from all Walks of Life
The Myth of the Ever-Low Iron Levels in Vegetarians
Treating Celiac Disease
Going Gluten-free Changed my LifeThe Symptoms of Celiac Disease
Where in the body does Celiac Disease occur?
Special Types of Celiac Disease
Untreated Celiac Disease Causes accompanying illnesses
How Celiac Disease is diagnosed
Blood Work required for a Celiac Disease Diagnosis
Your Blood Work can come back negative, and it can still be Celiac Disease
A Gastroscopy Sheds Light on Celiac Disease
The Knowledge Gap Between You and Your Celiac Disease Diagnosis
Celiac Disease Affects People from all Walks of Life
The lack of awareness of celiac disease is indeed a problem. Slowly but surely celiac disease is being put on the map of potential culprits for all sorts of physical and psychological symptoms.The Myth of the Ever-Low Iron Levels in Vegetarians
Treating Celiac Disease
Going Gluten-free Changed my Life
Doctors regularly compliment my excellent iron levels!