After sharing my personal story of living with undiagnosed celiac disease last spring, my father brought a series of frightening events that occurred just over a decade ago to my attention and asked why I didn’t mention them in my post. The plain and simple truth was, I didn’t (and still don’t) know if the 4 ambulance trips I made to the emergency room in the late 1990′s had anything to do with my (then) yet undiagnosed celiac disease, but I’ve often wondered if there was a connection. After thinking about it for a while, I turned to one of the experts I trust most, Dr. Rodney Ford and asked him if he had ever heard of any similar experiences and he promptly told me to research ‘Celiac Crisis.’
I decided to share the following story because one, I’d love to know if anyone else has experienced anything similar and two, to hopefully bring some awareness to this little known and potentially fatal condition.
Celiac crisis is a rare, poorly understood, but potentially deadly condition in which patients with celiac disease suffer from severe diarrhea and other serious metabolic changes.
Celiac Crisis is specifically defined as acute onset or rapid progression of gastrointestinal symptoms, together with signs or symptoms of dehydration or malnutrition that may be attributed to celiac disease, and which require hospitalization and/or supplemental nutrition (click here to read the full article on celiac.com).
If you’re eating right now, I’d recommend reading this post later.
As I’ve mentioned several times in the past, I fall somewhere in-between the definition of an “Atypical” and “Silent” celiac, meaning I do not suffer from the “classic” gastrointestinal symptoms (diarrhea, bloating, cramping, malabsorption, etc.). My symptoms were largely skin related (dermatitis herpetiformis and psoriasis), as well as neurological (depression and ADHD). In my 38 years, I’ve never suffered from chronic GI issues, but there was a span of about 3 years (in the late 1990′s) in which I had a few curious events that landed me in the emergency room, my body in shock after I became severely dehydrated after a sudden and acute bought of diarrhea (we’re not talking loose stools here, it was as if I were urinating from the wrong side).
The first time it happened, I was at work (thankfully, I worked in a hotel and had a vacant room to retreat to). I had gone in that afternoon feeling totally fine but a few hours later, I began to feel like I was starting to come down with something. Within minutes, I could barely stand and my skin had become clammy – cool, sweaty and very pale. A fellow co-worker had to carry me to a nearby guest room where I spent the next hour or so on (or nearby) the toilet before I eventually passed out. Luckily, someone had come to check on me and promptly called an ambulance when they discovered me lying unconscious on the bathroom floor.
The next thing I knew, I was at the hospital hooked up to an IV and under a mound of warm blankets but I was still so cold that I asked for a few more. How the words managed to escape the dry, barren desert that had become my mouth, I will never know. After the nurse had hooked up my 8th bag of saline solution and my faculties began to return, I asked what the heck happened. She said I was brought in to the ER in pretty bad shape, that my blood pressure was so low, it didn’t even register on the machine. They couldn’t even locate my pulse. My body had gone into shock and they weren’t sure why, but suspected I’d come down with what they were calling the Asian Bird Flu at the time (this was 1997 and there had been an outbreak of the H5N1 virus after people were infected from a poultry outbreak in China).
Several months later, it happened again and in much the same fashion. I felt fine one moment then within minutes, the clammy skin and piercing pain in my abdomen began to rear its ugly head before I went unconscious a short time later (after the accompanying bathroom trouble). Once again, my blood pressure dropped so low the ER staff had a difficult time obtaining it. This time though, the doctor said I must have eaten something that resulted in a food borne illness.
The 4th and final episode happened in 1999, and this was the most frightening one of all. By this time, I had moved to New Mexico (from Ohio) and I lived in an apartment about 30 minutes from my parents (and my new boyfriend Mike). I was completely alone when “the drill” began. The symptoms were so familiar by this point, I knew what was getting ready to happen so I picked up the phone and called my dad. A decision that would ultimately save my life.
By the time my father arrived at my apartment, I was semi-conscious. Barely aware enough to hear the panic in his voice as he scrambled to call 911. I vaguely remember laying there when a sudden sense of peace overcame me. If I were going to die, I wanted to go in the comfort and safety of my father’s arms (can you tell I’m a bonafide daddy’s girl?).
I obviously don’t recall what happened next and for whatever reason, I never asked my dad about the details until yesterday, over a decade later. After a brief moment of silence, he told me that by the time the ambulance had arrived to my apartment, I was already unresponsive. I had been in the ER for maybe 3 minutes when a call was made and a team of at least 10 emergency room staff ascended upon me and pushed my gurney “somewhere else.” After all the hullabaloo had subsided, the doctor told my dad that once again, I was severely dehydrated and in shock. My blood pressure was so low this time that they actually thought I wouldn’t make it.
Wanna know what they thought caused it this time?
Never once did they suspect that it could have been the pasta my broccoli was sitting in.
But oddly enough, once I quit eating broccoli, it never happened again, so I don’t know if those 4 events had anything to do with my underlying celiac disease or not. I will say this though, I had enough suspicion that it wasn’t the broccoli that I got brave one weekend last year and took a bite (I made sure Mike was home with me).
Nothing happened (other than some mild discomfort from not having had any cruciferous vegetables in over a decade) and I’ve been eating broccoli on a regular basis ever since and no more life threatening trips to the ER.
Could it have been celiac/gluten related? I have a sneaking suspicion that yes, it could have been but back then (heck, even a month ago), I thought they were completely isolated events that occurred as the result of a virus, a food borne illness…or broccoli. I continued eating gluten for another 9 years after the final “incident” but I never ended up back in the Emergency Room. The more I think about it though, my celiac has never made logical sense to me. My dermatitis herpetiformis was never chronic or severe, it came and went over the years (it was usually seasonal). My psoriasis lasted all of one year before I went into spontaneous remission over 2 decades ago. I had two healthy children, getting pregnant with each on the first try (I did have some complications with Sam though…probably from eating my body weight in Weinerschnitzels!).
Celiac Crisis in Adults: Rare or Just Rarely Recognized GastroenterologyVolume 138, Issue 5, Supplement 1, Pages S-305, May 2010
Celiac crisis is a life-threatening syndrome where celiac disease presents with profuse diarrhea and severe metabolic disturbances. Celiac crisis in adults is believed to be uncommon and is not well documented. However, it is likely that many patients with celiac crisis are not definitively diagnosed.
Have you ever had anything like this happen to you or someone you know? If so, was it ever connected to celiac disease?
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