My Diagnosis Story

It seems like every person with Celiac Disease has a "diagnosis story"...in fact, a big part of the "subculture" of Celiac disease is sharing one's diagnosis story. Often, these stories are shared in both relief at FINALLY having a diagnosis, and irritation, that it took so long to get a correct diagnosis.

I have had stomach troubles for my whole life. When I was a baby, my mother tells me that I vomited "almost constantly". I have lots of memories of being sick when I was a child, with the most notable time being when I was approximately 12. It was summer. I came down with a sort of stomach illness that would not go away. TMI WARNING. Leave now if hearing about bodily functions and gastrointestinal issues scares you. Here is a nice picture of a kitty for your troubles:

Ok. Now that they're gone we can get down to business. I first felt like I was "sick" at age 12,  and once "THE SUMMER" happened, I never felt fully well, despite having intermittent periods of almost no GI symptoms. My trials during "THE SUMMER" began with a vivid memory that I have still. One night, I awoke from a deep sleep with gut wrenching intestinal cramps. I laid in bed for awhile, shivering from the pain, until I realized that if I didn't get to the toilet soon, I was going to have major problems. I remember almost crawling to the bathroom in pain and having diarrhea with HORRIBLE cramping for the rest of the night. and the next night. and the next night. and so on... My mom thought I had a stomach bug, but it didn't go away after a day or two, and I was starting to lose a bit of weight since I couldn't eat. Eating made me sick. My mother, worried, took me to the doctor. I underwent lots of tests for all sorts of things, including parasites, and I was still not getting better. All the tests were negative, so I was sent home with a shoulder shrug and instructions to eat more yogurt to develop good gut bacteria. After a couple of months, I was still ill and losing weight, so I saw a gastroenterologist. After a very traumatic barium enema (well, the prep was the traumatic part), she diagnosed me with Crohn's disease and I was put on sulfasalizine. Throughout adolescence and into the early part of college, I took sulfasalizine and occasional prednisone for what I thought were Crohn's disease flare ups. The steroids made me gain weight and have a bloated face and arms, which is very hard for a young woman. In addition, all of my clothes became stained from my yellow-sulfasalizine sweat. For some unexplained reason, I got a lot better after about age 21. I ceased having as frequent of flares, and the pendulum of my troubles swung the other way and became more related to having constipation instead of diarrhea. I still got random and painful intestinal cramping, but it was more rare. I also didn't have other symptoms of Crohn's disease, and even then, considered myself to probably be misdiagnosed. I assumed I just had IBS or something, especially when I learned that a barium enema is not the preferred way to diagnose Crohn's (a colonoscopy would have been better). In my later 20s, my lifelong acid reflux became seriously worse. I also started to develop lots of cutaneous problems--skin funguses and severely itchy eczema which I later learned is actually called Dermatitis Herpetiformis, and is a classic symptom of Celiac disease. Perhaps worst of all was that I started to have horrible migraines, sometimes on an almost weekly basis. And, if all of this wasn't bad enough, I suffered from almost constant fatigue. If I couldn't sleep for at least 10 hours each night, I was exhausted. This was exacerbated by the fact that I experienced not-infrequent insomnia. Feeling like I was in general ill-health and in preparation for my upcoming wedding, in 2013, I became a sort of health freak. I lost 25 lbs, started running, and got in shape. Still, I was tired all the time, my skin conditions were getting worse, and I started having problems with my bowels again. I won't get too graphic, but these problems sometimes made me feel like I couldn't be far from a toilet, which made me not want to leave the house. I also began to occasionally develop what my husband nicknamed, "Third-World Baby Syndrome"...where my stomach would painfully swell up like a basketball, and I appeared like one of those pictures of starving children in Somalia. It wasn't fun, but I had been dealing with this sort of thing my whole life, so it just seemed normal to me.

In mid-2014, I finally saw a different gastroenterologist (the first one I had seen since I was initially diagnosed as a teen). He wanted to perform an endoscopy to evaluate my esophagus in light of my history of acid reflux. Based on my history, he seemed to think I had Crohn's disease as well. Perhaps I was just blessed with a rather long remission, he suggested? When I woke up from the endoscopy, the GI doc told me that my esophagus looked fine, but that my small bowel showed signs of duodenal scalloping, which is a symptom of Celiac disease. He took a biopsy and sent it to the lab. I actually was not worried and put the possibility of Celiac disease out of my mind, because whenever you hear Celiac disease mentioned, it is qualified with the statement that it is a "very rare" condition that affects no more than 1% of the population.

Several days later, the nurse called me up with the results of my pathology report. Surprise Surprise...it was positive for Celiac disease (If there are any pathologists reading, I had Marsh Stage III disease, with partial villous atrophy). Just in case there was any doubt about it (unlikely at that point), my doctor confirmed the diagnosis by ordering a blood test to see if I had antibodies to gluten--which would indicate that gluten was producing an auto-immune reaction in my body. This test was also positive. Therefore, on June 19th, 2014, I stopped consuming gluten immediately and indefinitely. As I write this, the diagnosis is less than a month old, which is trippy, because it feels much longer. I have learned so much and yet not enough at the same time. It is weird to know that for all those years I was suffering from something entirely different than what me or my doctors thought. It shows that doctors can make mistakes too. I am utterly grateful to my current GI doctor for solving the mystery of my ill health, and I am grateful to put a name to my condition. I am also (surprisingly) grateful that I have a disease to which there is no medical cure. A gluten-free diet IS my cure, which sometimes sucks when cupcakes are involved, but ultimately, after all those years of taking pills and steroids, I am so glad that medication is not required!

Note: If you think you or someone you know might have Celiac disease, it is best to see a doctor and request the Celiac blood test before making dietary changes. All positive blood tests need to be confirmed with a biopsy, but the blood test can let you know if you don't have Celiac disease. Also, you should never embark on a gluten-free diet prior to Celiac disease testing, or the results won't be accurate (i.e. you might see a false negative).

Truth Bomb: Celiac Disease is not a Lifestyle Choice

I was hoping to save my ranting for later, once I had well-established the blog as a positive and happy place, and ingrained in my readers' minds that I am a stable and kind person who is entitled to the occasional ill mood (aren't we all?). Unfortunately, I couldn't wait very long for this, but then again, impulse control has never been one of my strong suits. I expect this post will ruffle some feathers, but this is my blog, so I can say what I want.

To set the stage for this rant, let's take a quick step back to my childhood, which took place largely in the 1990's.  It was a simpler time. Bill Clinton was hooking up with his white house intern, we were all dancing the Macarena, and the "hashtag" was still just the "pound sign". You had to choose between talking on the phone and going on the internet, and it was the golden age of Brett Favre. Notably, almost no one in this majestic era had ever even heard of  a little protein called "gluten".

Flash forward about 17 years. Now, it seems that not a day goes by where health magazines, the media, and such well-respected health authorities as Miley Cyrus and Dr. Oz  extoll the virtues and (dubious) health benefits of a gluten-free diet. Self-diagnosed "gluten-intolerant" folk have become nearly as vocal (and obnoxious) as we used to make fun of vegans for being. Quite predictably, these frequently self-righteous and often ill-informed types have unintentionally reduced what is a legitimately serious medical condition for a very small percentage of the population, into an oft ridiculed diet fad. We can see the pervasiveness of society's collective irritation with the "gluten-free diet" in late-night comedy clips:

 it also takes the form of creepy Reddit posts by psychologically unsound waitstaff.


Almost no one who avoids gluten by choice realizes how hard it actually is to have Celiac disease. In fact, news of my diagnosis was frequently met with remarks of, "I've been gluten-free for (3 months, 6 months, 2 years, etc) and it's just SO EASY!" or even better, "You're going to lose so much weight!" Because the gluten-free by choice people probably don't know this, I will inform them: most of those restaurants with "gluten friendly" menus are not suitable for Celiacs, because of issues with cross-contamination in the kitchen. I can't eat french fries unless they're cooked in a dedicated gluten-free fryer (which the majority of restaurants don't have). I can't buy gluten-free baked goods unless they're made in a dedicated gluten-free facility. I can't even wear make-up that contains gluten, or I break out in a horrible rash that was misdiagnosed for years as eczema.  I am not sharing this information because I am seeking pity. In fact, I don't consider it to be that much of a burden anyway. However, I want people to know what it's really like for me and for thousands of other Celiacs. A truly gluten-free diet is a genuine challenge, and anyone who thinks it is "easy" or "fun" is more than likely not actually following one.

The gluten-free diet fad belittles my legitimate condition and it seriously pisses me off.  Why? When I do venture to a restaurant and ask questions about gluten-free menu items and kitchen preparation techniques, I can just tell that most people think I am being frivolous. Even worse, I constantly worry that waitstaff will behave in the manner described in the above referenced Reddit post and purposely gluten me. I am an in-shape, upper-middle-class white woman. I fit the stereotype of a fad dieter PERFECTLY. The struggle to explain the legitimacy of my needs is real, and it is only made harder by people who undermine it by making it seem like "gluten-free" is a silly little diet that you can go off of on Thanksgiving or your birthday or when there's a really yummy cake in the office. I have a good friend who (vocally) jumped on the gluten-free bandwagon a year ago. She still drinks beer and eats soy sauce. This sort of behavior  makes everyone think that Celiacs can drink beer and eat soy sauce too, and thereby indirectly causes the legitimacy of the condition to be misunderstood and minimized.

All this said, there does appear to be anecdotal evidence of people feeling better after they start (what they think) is a gluten-free diet. However, I can't find any actual scientific evidence (read: peer reviewed journal articles) that support non-Celiac gluten intolerance as a real thing. In fact, a recent study showed that non-Celiac gluten intolerance may not exist at all. People are free to do what they think makes them feel better (evidence or not) I suppose, but even this can be harmful. Someone who thinks they may have Celiac disease should not start  a gluten-free diet without first being formally evaluated. Doing so can cause false negatives in their tests. In general, any long-term or severe stomach problem should be assessed by a doctor. Someone who ignores legitimate symptoms and opts to change one's diet without a diagnosis is doing something dangerous. The condition, if serious, will likely get worse if untreated. My point is: there can be so many things wrong with a person and the solution is likely not a gluten-free diet. Unless you have Celiac disease, that is.

There are plenty of other diet trends that one can join and act self-righteous about. Please leave Celiac disease alone.