A diagnosis of celiac disease is dependent on having a confirmatory gut biopsy endoscopically. My experience of the endoscopy procedure was very different from the one portrayed by my consultant, and although I don’t want to discourage anyone from undertaking this vital procedure I do feel compelled to inform others of my experience.
My intention is not to discourage you from having the procedure, but rather to inform and empower. I firmly believe that had my expectations been closer to reality I would have been better prepared and more able to cope both physically and emotionally.
Diagnosis of celiac disease is a two step process; a blood test followed by a gut biopsy using an endoscopy. Its this second step which is the focus of this post.
First Step: Blood Test
A blood test is used to detect the presence and quantity of specific antibodies your body produces as a result of the immunological response to the presence of dietary gluten. These serological tests are both specific and relatively sensitive1, 2 where an individual with an unusual elevation of these antibodies has a greater that 95% chance of having celiac disease3. If your serological test results reveals abnormally elevated levels of antibodies, the next stage of diagnosis is the gut biopsy which is carried out using an endoscopy. Your doctor will refer you to a gastroenterologist to carry out the procedure.
Second Step: Endoscopy and Gut Biopsy
To summarize; the procedure uses an endoscope, which is a thin flexible tube with a fiber optic light. This is inserted down your throat and guided by a small camera down through your esophagus, your stomach and then into the small intestine4, 2. Once inside your small intestine, a biopsy instrument is passed down the endoscope3 and several small pieces of tissue or biopsies are removed2, 3 from the intestinal lining. The biopsy itself is entirely painless, the only irritation and discomfort occurs from the insertion of the endoscope. Patients are offered a choice of either sedation or a throat spray to ease the discomfort of the endoscope entering the throat.
Why You Need It
Definitive diagnosis of celiac disease is currently only possible with an endoscopy and gut biopsy2 and it is considered the most accurate diagnostic tool3, 5. During the procedure, the gastroenterologist will also examine the health of your esophagus, stomach and intestine looking for signs of damage, inflammation or ulcerations which may have occurred from years of undiagnosed celiac disease.
If you are still doubtful, here are a few more reasons why you should undergo the procedure6, 7:
- Left untreated, celiac disease can greatly decrease your quality of life.
- Left untreated, celiac disease can increase your risks of infertility, osteoporosis and cancers.
- It is estimated that approximately half a million people in the UK are likely to have celiac disease but have not yet been diagnosed accurately.
- Approximately 1 in 10 individuals with celiac disease have been incorrectly diagnosed by their doctor as having Irritable Bowel Syndrome (IBS).
My Endoscopy Experience
When I met with my gastroenterologist he provided me with a very vague idea of what to expect. When I requested more details I was simply told it was nothing to worry about, it was completely painless and I would be given a spray to numb my throat just before the endoscopy. I told him I was under the impression I could be sedated for the procedure; he replied saying “well you can” and looked almost put out I had asked, “but you won’t need it. The throat spray is enough to numb your throat and it’ll be painless”. I was told to fast for at least 12 hours before the procedure. As I left I must have looked nervous, as the nurse that had been in consultant room took me to one side “if you’re really worried about it just tell him you want to be sedated on the day and he’ll give it you.
On the day of the endoscopy I was nervous but not overly worried about it. When I was called into the procedure room, the gastroenterologist presented me with a consent form. He quickly explained what the form was and handed me a pen. I asked again if I could have the sedation, he rolled his eyes with an air of annoyance making me feel like I was being a complete nuisance. He raised his tone a little, being very assertive informing me that a throat spray was sufficient, pointed at the form for me to sign, and stood up as if to hurry the matter along. To say I felt intimidated is an understatement, I signed the consent form.
I was quickly ushered to a bed, a throat spray materialized in front of me with a gesture to open wide. It was all so rushed and inevitably the throat spray hit the roof of my mouth, nowhere near the back of my throat. I remember being surprised at the number of people standing in this really small room. Like a well rehearsed military operation, three individuals stepped forward, I was lifted and positioned on my left side. A mouth piece was placed in my mouth to stop me biting down on the tube. Two of the three individuals, both men, literally draped themselves across my legs and torso using their weight to pin me down. The third person held my arms whilst the gastroenterologist started the procedure. I had expected to gag a little during the initial insertion of the tube and for it to then subside. However, it quickly became clear why I was being pinned down by three people.
The procedure took 20 minutes, during which I gagged and retched continuously. My arms were constantly held back to stop me from pulling the tube out. It was relentless. I felt sheer panic as I thought I would choke or suffocate. If I had, there was no means whatsoever for me to signal that I needed the procedure to cease. Communication from the gastroenterologist during the procedure was minimal, his only words were your stomach lining looks ok.
When it was over, I felt relief but primarily anger. The procedure I had just experienced was very far from the quick and painless procedure I had been promised. I had been woefully under prepared and felt extremely upset from what had just taken place. The gastroenterologist refused to make eye contact with me and there was a fraught silence. A nurse took me to one side to help me sort myself out, I looked terrible. My eyes were bloodshot and my eyes and nose just wouldn’t stop running. I looked so awful that upon re-entering the hospital waiting room the receptionist sat with me for a while to make sure I was ok.
The physical side effects were painful but temporary. My throat was very tender and raspy, and my stomach muscles were sore. For me, the psychological side effects were much more significant. I felt totally deceived and violated. To this day when I remember the procedure my throat tightens and I experience the sensation of panic.
I have since spoken to other gastroenterologists who were surprised to learn that I had the procedure without sedation. I’m unsure as to why my gastroenterologist preferred not to sedate his patients, maybe it would have placed a drain on resources or perhaps he could get through more procedures in a day with just a throat spray. Whatever the reason, I hope that he is the minority and that the majority place the well being of their patients over departmental productivity.
If you are currently in the process of being diagnosed with celiac disease, I hope that my experience has provided you with additional insight regarding the endoscopy procedure. Please read this in the essence of which it was written, that knowledge is empowering, and not as a deterrent to having the procedure. Unfortunately, having an endoscopy is a necessary part of being diagnosed with celiac disease, and this was just my personal experience of it. I have no doubt that many people will have had a totally different, less traumatic encounter. Just remember it’s one small step, albeit an important one, in your lifelong journey to a much healthier and happier you.