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.

The Dark Horse: Our Backstory

Oftentimes, people who do not know me think I am a Martha-Stewart-y type woman, or at least one that loves to bake - why else would I use weird flours like tapioca starch or garbanzo bean flour? (Nope, not Martha. Nor do I love to bake, just do it for the eating part.)

What they do not know is that it is the ultimate in irony I have a child with a diagnosis in which I would have to learn to keep him safe and healthy through my kitchen. My kitchen! Here was my first attempt at making a Christmas tree cake for the kids oh-so-many years ago, so you get a feel for my inherent culinary skills:

Our Celiac backstory actually begins when I lost feeling in my face seven years ago. I had been experiencing other issues the previous year (mainly unexplained neuropathy), and had been seen by umpteen doctors and had no real answers. When half of my face went numb, the doctor ordered an MRI - which came back "brain is unremarkable" (the only time I would cheer at being told that, right?) - and was left with no answers and a numb face. So - it was up to me, Google, and God to figure this out.

In Googling "half numb face," the only real hits I was getting were about this disease I knew nothing about, Celiac disease. Journal articles at that time claimed that up to 15% of people with this type of numbness had undiagnosed Celiac disease. Next step was looking into this "Celiac" - and while researching, I saw pictures that stopped me in my tracks. Skinny little toddlers with enormous, distended bellies - they looked just like my three year old.

A few weeks passed and with the turning of seasons from winter to spring, it was time to switch out clothing for my sons. My three year old tried on clothes from the previous year and they all fit perfectly. I measured him and it seemed as if he had not grown at all. We decided to call the doctor and get an appointment for verification - and ironically, his pediatrian was a man of short stature; their website that month joked "are you taller than the Doctor?"

Our doctor confirmed that our son had indeed not grown - and had fallen completely off the growth chart. He ordered tests for bone age, thyroid and growth hormone. I asked him if he would run tests for Celiac - to which he replied - "if this is the Kentucky Derby, Celiac is the dark horse" - but graciously, he ordered the tests. He spent several minutes in his office, researching which tests to order, and told me to give him a call in two weeks for the results.

Four days later, upon returning home from a park playdate with my sons, there was a red flashing light on the answering machine. It was the doctor himself, saying the test results were back - and to call him. Of course it was noon straight up, and the office had just closed for lunch. My heart raced through those next 60 minutes, and my gut knew what was coming.

When I called, I was patched directly to the doctor, who started off with "it's not his thyroid... it's not growth hormone... I've never seen anything like this before, his numbers are off the charts!" Four of the six panels had come back, levels over 200 (normal range is under 20), yet my son was not having stomach pains or diarrhea (*though in hindsight, this was an issue when he was younger but it seemingly resolved) or anything the doctor was taught were the signs of Celiac. He said it was "silent Celiac" and wanted us to get him to the Cleveland Clinic (we lived nearby at the time) as soon as possible.

We were fortunate to get into a wonderful pediatric GI within the week, but it was weeks before the endoscopy could be done (though the doctor said she had never seen blood levels so high without a positive endoscopy, the endoscopy is the gold standard for diagnosis). Those were the hardest weeks, feeding my graham-cracker-addicted tot what I now knew was poison to him, grieving as I knew those favorite foods would soon be forbidden.

The doctor came out of the endoscopy and showed us pictures of our son's intestines; she could see the damage and knew the diagnosis though the lab would have to confirm in the next few days. A week later, we met for the results and our son was officially given the diagnosis of Celiac Disease, had a consultation with a dietitian, and were sent on our way.

I am so grateful to both of these doctors - our pediatrician for listening, and ordering the tests. The  pediatric GI, who had the bedside manner of a mom, which is just what this mom needed to get started on this journey. The average time it takes for diagnosis in America runs anywhere from 7 to 11 years --- and for us, it was a matter of months.

Rarely do I journal, but strangely, I wrote a lot during this time. I was in the midst of Beth Moore's Bible Study "Stepping Up" and it encouraged me greatly in that time of stress, very comforting as we were ruling out scary diagnoses while being assigned other ones. I'll leave you with my favorite encouragement during that time: "...everything we believe to be the death of us is instead a hand-engraved invitation to a new beginning." With my health issues, my son's new diagnosis, and a 227 mile move in our near future that was not even on our radar yet, this was the start of our new beginning.