Celiac Disease: The Cliff Notes Version

There are many great places to gather in depth biologic explanations of the inner workings of Celiac Disease – this would not be one of them.

(If you would like the very technical explanation, check out this Wikipedia link: https://en.wikipedia.org/wiki/Coeliac_disease)

Instead, I would like to present a general overview of what Celiac disease is, and what it is not. Now that the gluten free diet has become much more mainstream, this is a more popular topic, though I don’t think most people even equate “gluten free” as the absolute cure for this particular autoimmune disease. How amazingly cool is that? That’s what I want the world to know! Time to share some knowledge and clear up some common misconceptions.

Celiac Disease…

Is autoimmune disease. It is a reaction by the human body in response to gluten, which is a protein found in wheat, barley, rye, malt and most oats. When a person with Celiac disease eats gluten, it triggers a reaction in which the villi in the small intestine are sheared off. Those villi are essential to providing nutrients to our bodies – and if they are gone, malnourishment will result.

Has over 250 symptoms. Stomach and bathroom issues are the ones that get the most air time, but in our case, our son’s growth stunted. Depression, schizophrenia, and a host of other mental issues. Neuropathy and other neurological symptoms. Miscarriage, anemia, and bone loss. Teeth defects. All a result of that malnourishment caused by damaged villi. (an extensive list from The University of Chicago’s Celiac Disease Center can be downloaded here: http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf and a smaller list of the more prevalent symptoms from the National Foundation for Celiac Awareness: http://www.celiaccentral.org/disease-symptoms-checklist/) 

Can only be cured by diet. By eating gluten free, the trigger is removed, and the autoimmune disease goes into remission. My son with Celiac disease has his blood tested every year, and his levels that were over 200 are now under 10, which are well within the range of “normal” (that being under 20). So amazing that his bloodwork looks like that of anyone off the street that does not have the disease!

Is diagnosed by bloodwork AND an endoscopy. Currently that is the “gold standard,” but even this week there was new research with hopes that soon a blood test alone will be sufficient.

Can be tricky to diagnose. In order to be diagnosed, a person must be eating gluten until the tests are complete. If a person has Celiac and removes gluten from their diet before being tested, their body will immediately start to heal – and the bloodwork and biopsy will look healthy if they have been on the gluten free diet long enough. (which is great, but will often lead to a false negative diagnosis) There are also cases in which the bloodwork shows Celiac and the biopsy doesn’t, and vice versa.

Is genetic. Someone with Celiac disease must have one of the genes that enables the body to have this disease. No gene, you cannot have Celiac. Also means if you have Celiac, someone in your bloodline carries the gene, even if they do not have the disease.

Can present itself at any age. As it is an autoimmune disease, it may not trigger and present itself until later in life (we know 80 and 90 year olds who have recently been diagnosed, and they showed no symptoms until late in life!).

Is NOT an allergy, though many of us will describe it that way in restaurants or in social settings, as the reaction is similar and people understand allergies more than autoimmune diseases. In an allergy, the body fights the intruding allergen, but with an autoimmune disease like Celiac, the intruder (gluten) kicks off a reaction in which the body fights itself (by destroying the villi). But often it is much easier and faster to say it is an allergy rather than explaining to a waiter that the gluten free food we are ordering keeps my son’s autoimmune disease at bay.

Is NOT something children outgrow. My son and all other Celiac kids will have to stay gluten free for their entire lives (*though there are several vaccines and medicinal cures being developed right now).

Is NOT a minor issue, even when well managed and the person is asymptomatic. It does get easier to shop and cook, but every day, every meal, every social experience, every trip – all must be planned and analyzed to ensure gluten free items are available or on hand.

Is NOT something where “a little bit” won’t hurt. Having a bite of gluten can wreak havoc on a Celiac’s system. If you divide one piece of bread into approximately 100 pieces – that tiny piece of bread is the amount of gluten in one entire day that would start to cause damage to a Celiac’s small intestine. (Two good articles: https://thechameleonstongue.wordpress.com/2011/09/29/how-much-gluten-is-safe-for-coeliacs/ and http://celiacdisease.about.com/od/PreventingCrossContamination/f/How-Much-Gluten-Can-Make-Me-Sick.htm)

Is NOT a case in which you can have a latent case or “mine isn’t as bad as yours” – it is like being pregnant. Either you have Celiac disease or you do not. Cure is the same either way, full compliance. (one of my favorite articles on this topic: http://theceliacmd.com/2013/07/my-doctor-told-me-i-have-mild-celiac-disease-what-does-that-mean/) 

Does NOT look the same in everyone. As mentioned above, if there are over 250 symptoms, as you can imagine, there are just as many reactions. Some, as my son, seemingly have no reaction when exposed to gluten. A friend of ours feels extremely tired within twenty minutes. Others are physically sick for three to ten days, depending on the exposure.

Does NOT automatically mean eating healthier. Gluten free processed foods are often not very healthy - wheat is replaced with rice flour (which has a higher glycemic index), less fiber, and are also usually not fortified the way glutenous goods are (such as bread and cereals). Naturally gluten free foods - such as meat, dairy, fruits and vegetables - should be the foundation of a healthy gluten free diet (or any diet) - with the processed foods kept to a minimum. Easier said than done in reality, though, especially with cracker and cereal loving children!

Gluten free brownies and cookies being made in bulk for a band contest this weekend - 

just because it's gluten free doesn't mean it's good for you!

Hopefully this helps provide a little insight into understanding what someone is talking about if they say they have Celiac Disease, and why being gluten free is such a huge deal to their well-being.