Barriers to Current Diagnositc Criteria for Gluten Intolernace:
E-Mail Letter to World Gastroenterologists Organizaion
I thank you for your time.
I am a Registered Nurse in Renton, Washington. My own story of being gluten intolerant does not include the appropriate "gold-standard" diagnosis because of numerous barriers. I have a feeling that I am not unique in these respects. In a nutshell, these are the barriers I encountered:
1. Personal Prejudice: I was aware of gluten intolerance because my mother-in-law had it. She managed to make such a big deal out of it and her suffering that I personally distrusted her claims.
2. Personal Denial: When I first had malabsorption, I ignored it for a year . . .thinking it would go away. Then I looked up the possible causes on the Internet and selected "pancreatic cancer" as a likely cause. However when I had no other pancreatic cancer symptoms for over a year . . . I was forced to consider gluten intolerance.
3. Physician Denial: I approached my personal care physician and her response was. "Oh I think that is very unlikely. More likely, you have a lactose intolerance. That is much more common. Try cutting milk out of your diet."
4. Lack of Access to Medical Services: At the time, I lived on a remote island in Alaska. The gastroenterologist (internist) visited the town about once every 2 months. On the time I scheduled a visit with him, his visit was cancelled. The time I just wanted to mention it to him (because I helped him with conscious sedation for upper GIs) he became acutely ill with a kidney stone.
5. Family Prejudice: My own husband, at the time, was a retired surgeon. His opinion of me was that I was a hypochondriac and that the disease was in a category that was similar to other "quasi-illnesses." He was also very embarressed that I became a "picky eater."
Given this host of barriers . . . and realizing that it would take another 9 months or so to be properly diagnosed, I went ahead with the gluten free diet. Over time, I got a lot better. The family prejudice continued to be problematic, so when we moved to Oregon later that year, and I was able to get medical insurance there, I determined that I would try the appropriate tests. I consulted a gastroenterologist and under his guidance returned to a regular diet. Because of family prejudice, and contraints of moving back to Alaska, the 6 week period was shortened to 4.5 weeks. Also because I had been on a gluten free diet for almost a year, I did not become symptomatic with malabsorption till then. Just the same, the blood tests were not conclusive . . .and the stool sample was lost by the lab. My marriage was in a wreck at the time. I was very depressed and crying every day. I left my marriage, my job, and my association with the gastroenterologist. By this time the gastric symptoms were severe, with malabsorption, and stomach pain. But again, I had a lack of access to medical services because I did not have a job.
I just went ahead and decided that I personally had enough clinical proof. I determined to return to the gluten free diet.
When I reconsidered going back and having the "gold standard" diagnosis, I realized that I could not sacrifice another 6 months of illness in order to "prove" that I had the disease. So the final barrier is:
6: Current standards of testing are too invasive, expensive, and unethical: Asking persons to return to a state of illness to prove that they have that illness is just not ethically right. Would we ask a diabetic person to eat an inappropriate diet for 6 weeks and then ask him to have a procedure where he had to be sedated to prove that he had diabetes? Also it will take 6 more months to heal up from that diagnostic period, if ever.
Consider as well, that no matter what a test "proves," the clinical situation is the one that affects the patient.
I thank you for the opportunity to send you this email. My purpose here is not to complain, but to start a dialogue related to this issue. I welcome your response.
Yours truly,
Colleen Davenport, RN, BSN, MSN
E-Mail Letter to World Gastroenterologists Organizaion
I thank you for your time.
I am a Registered Nurse in Renton, Washington. My own story of being gluten intolerant does not include the appropriate "gold-standard" diagnosis because of numerous barriers. I have a feeling that I am not unique in these respects. In a nutshell, these are the barriers I encountered:
1. Personal Prejudice: I was aware of gluten intolerance because my mother-in-law had it. She managed to make such a big deal out of it and her suffering that I personally distrusted her claims.
2. Personal Denial: When I first had malabsorption, I ignored it for a year . . .thinking it would go away. Then I looked up the possible causes on the Internet and selected "pancreatic cancer" as a likely cause. However when I had no other pancreatic cancer symptoms for over a year . . . I was forced to consider gluten intolerance.
3. Physician Denial: I approached my personal care physician and her response was. "Oh I think that is very unlikely. More likely, you have a lactose intolerance. That is much more common. Try cutting milk out of your diet."
4. Lack of Access to Medical Services: At the time, I lived on a remote island in Alaska. The gastroenterologist (internist) visited the town about once every 2 months. On the time I scheduled a visit with him, his visit was cancelled. The time I just wanted to mention it to him (because I helped him with conscious sedation for upper GIs) he became acutely ill with a kidney stone.
5. Family Prejudice: My own husband, at the time, was a retired surgeon. His opinion of me was that I was a hypochondriac and that the disease was in a category that was similar to other "quasi-illnesses." He was also very embarressed that I became a "picky eater."
Given this host of barriers . . . and realizing that it would take another 9 months or so to be properly diagnosed, I went ahead with the gluten free diet. Over time, I got a lot better. The family prejudice continued to be problematic, so when we moved to Oregon later that year, and I was able to get medical insurance there, I determined that I would try the appropriate tests. I consulted a gastroenterologist and under his guidance returned to a regular diet. Because of family prejudice, and contraints of moving back to Alaska, the 6 week period was shortened to 4.5 weeks. Also because I had been on a gluten free diet for almost a year, I did not become symptomatic with malabsorption till then. Just the same, the blood tests were not conclusive . . .and the stool sample was lost by the lab. My marriage was in a wreck at the time. I was very depressed and crying every day. I left my marriage, my job, and my association with the gastroenterologist. By this time the gastric symptoms were severe, with malabsorption, and stomach pain. But again, I had a lack of access to medical services because I did not have a job.
I just went ahead and decided that I personally had enough clinical proof. I determined to return to the gluten free diet.
When I reconsidered going back and having the "gold standard" diagnosis, I realized that I could not sacrifice another 6 months of illness in order to "prove" that I had the disease. So the final barrier is:
6: Current standards of testing are too invasive, expensive, and unethical: Asking persons to return to a state of illness to prove that they have that illness is just not ethically right. Would we ask a diabetic person to eat an inappropriate diet for 6 weeks and then ask him to have a procedure where he had to be sedated to prove that he had diabetes? Also it will take 6 more months to heal up from that diagnostic period, if ever.
Consider as well, that no matter what a test "proves," the clinical situation is the one that affects the patient.
I thank you for the opportunity to send you this email. My purpose here is not to complain, but to start a dialogue related to this issue. I welcome your response.
Yours truly,
Colleen Davenport, RN, BSN, MSN
