2012 was the year my health started its journey to hell in a hand basket. I’ve talked about all of my other chronic illnesses on the blog so far, but have left this one for last, I think because it’s actually the one I think about the least; I’ve had it the longest, so I’m just very used to having it by now that I don’t think about it much. But here is my diagnosis story.

At the end of the 2011 holiday season, my weight ballooned up to about 120 lbs, which was the most I had ever weighed in my life. You’re talking about a former dancer here, whose “happy weight” is about 112 lbs. So I figured I just needed to do a little bit of exercising to tone back up and stop eating junk food following the splurging around the holidays.

So I started doing just that. And the weight started to fall off pretty easily, probably because my happy weight is just where my body likes to be. It didn’t take too long to get there. I was back to my happy weight by May, so I stopped exercising and didn’t change my diet much.

There was only one problem. The weight loss continued. By July I had dropped to 108 lbs. September, 107 lbs. December, 105 lbs. And this was at the doctor’s office with clothing on. These were numbers I hadn’t seen since I was 13-14 years old. Plus I had stopped getting my period and I was having lower abdominal pain. I freaked out, thinking I had ovarian cancer or something terrible like that. So I went to see my primary care physician in July. There were several labs she wanted to run, including H. pylori and a celiac panel. I said I really didn’t think a celiac panel was necessary, since no one in my family had the disease and I wasn’t having massive diarrhea when I ate or anything like that. But she said I was at about the right age for onset, so she wanted to check just to be sure.

I eagerly awaited my labs results. When they came back, I was shocked. Everything was normal…except the celiac panel. My antibodies were elevated, indicating likely celiac disease. I couldn’t believe it. How could this even be possible? I knew it was an inherited disease and I knew no one in my family had it. And as far as I knew, I really had no symptoms…until I started doing research. While I waited two more months to see a gastroenterologist, and then another six weeks for an endoscopy, I did some research, since the diagnosis was virtually inevitable at this point.

At the top of their website, the Celiac Disease Foundation makes the definition pretty clear:

“Celiac disease is an autoimmune disorder that can occur in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide. Two and one-half million Americans are undiagnosed and are at risk for long-term health complications.”

I learned that gluten is a protein found in wheat, barley, and rye. Apparently, for unknown reasons, my body turned on gluten, seeing it as a foreign invader and mounting an immune response to it, leading to the aforementioned damage in the small intestine. This damage is specifically to the villi, the little fingerlike structures that line your small intestine like a shag carpet, and are responsible for absorbing the nutrients from your food. If these are damaged, as they are in celiac disease, you don’t absorb these nutrients. This explained my weight loss. I was eating, but essentially starving to death. By the time all was said and done, I weighed in at a feathery 100-101 lbs, harkening back to around the time I was 12 years old. I was practically skeletal, but with a damaged gut, I wasn’t going to be gaining weight any time soon. The only current treatment is a completely gluten free diet for life (although there are some possible medical treatments in the pipeline…stay tuned for feature posts!) And since it takes time for the gut to heal once starting on a gluten free diet, it would be awhile before I was able to gain back any substantial amount of weight.

I also learned that not all symptoms of celiac disease are gastrointestinal in nature. One of my primary symptoms was neurological, which happens in about a third of adult patients. Late in the summer, I began to experience a tingling sensation in my hands that would radiate up my arms to my shoulders. My hands would feel numb. This would typically happen if I was driving or if I was at work on a computer. I would have to shake my hands to get feeling back into them. Known as paresthesia,  this was a classic neurological symptom of celiac disease. So even though there are over 300 symptoms associated with celiac disease, my primary symptoms were weight loss, missed menstrual periods, acid reflux, and paresthesias.

For a definitive diagnosis, an endoscopy is needed so biopsies of the tissue in the small intestine can be taken to see if celiac disease is present. I finally had my endoscopy in November. I’d had an endoscopy before, so I knew what to expect and everything went well, after giving me extra medication to knock me out because apparently the standard amount they use wasn’t enough…I remember getting sleepy as the doctor stood over me with his arms crossed, looking down at me. I was still staring up at him when he said, “Give her more.” So for my medicine-inclined followers, I had 5 mg of Versed and 125 mcg of fentanyl, for itty-bitty me! But I was only out for about 15 minutes, because my husband said he was in the hallway as they were wheeling me out of the procedure room afterwards and I waved to him and said hi…which I have no recollection of. The next thing I knew, I awoke sitting in a recliner. How I had gotten from the bed to the chair beats me, since I don’t remember it.

My gastroenterologist was able to tell from the way my villi were “scalloped” that I definitely had celiac disease, although the tissue biopsy was needed to confirm that, which it did. At my follow-up visit in December, my gastroenterologist looked at my biopsy report, started laughing, and said, “My dear, you are a celiac!” He told me to start a gluten free diet and everything should be swell. However, as I will relate in future posts, it’s really not quite as simple as it sounds.

So now I was forever to be a member of the gluten free club. I decided to have one last Christmas to be able to eat gluten, but went gluten free forever a few days after Christmas 2012.  I have not intentionally ingested gluten since then. There have been a few accidents, which are unpleasantly explosive, if you catch my drift, but luckily I’m very careful, so it’s only happened to me 3 times in nearly 4 years.

There is so much more of this story to be told. An incurable autoimmune disease doesn’t just go away. So stay tuned…

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