How important is getting a diagnosis?
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janetcg2424
- Posts: 9
- Joined: Mon Dec 30, 2013 1:34 pm
How important is getting a diagnosis?
So glad I found this site, I truly believe with the right doctor and testing, I'd be diagnosed with microscopic colitis. I have been to 5 doctors in the last 3 years, had a colonoscopy that came back perfectly normal, have been diagnosed with IBS, and was finally able to find one doctor who prescribed two medications that have helped tremendously. Since finding this site a couple of weeks ago, I have started the elimination diet and am seeing great improvement. However, I was in a "flare" the entire month of December and at that time I scheduled yet another appointment with a doctor who was recommended on this site. My appointment is at the end of this month, and I do have insurance, but my deductible is quite large, and the visit is going to cost me quite a bit. So my question is, how important is it for me to actually be diagnosed? Especially since I am hoping to eventually treat my symptoms with diet alone (or perhaps a daily antihistamine and maybe OTC anti-diarrheal as needed). Thank you so much for your time, any and all input is greatly appreciated!
Hi Janet,
Welcome to our internet family. That's a very good question, and the answer "depends". If/when it's necessary to seek medical help with related issues in the future, sometimes an official diagnosis can make life a lot easier when dealing with doctors and the health care system in general, because if it's on your record, they normally will not question a diagnosis. For example, if you should ever seek a prescription for a corticosteroid to treat an MC flare, there would be no official medical basis for issuing such a prescription, so your request would almost certainly be declined. And doctors and other health care professionals tend to have a jaundiced attitude toward patients who claim to have a disorder or disease, but either did not meet the diagnostic criteria, or never bothered to pursue a diagnosis (they probably view that as a form of shunning their services).
That said, since treatment by diet is not a part of the official protocol for medical treatment of MC, an official prescription would be of academic interest only (unless additional testing, drug prescriptions, or other services might be needed in the future). Since the official medical description of MC includes no association whatsoever with food sensitivities, a diagnosis would be of little benefit for sorting out diet issues (though a few medical practitioners are indeed beginning to recognize the diet connection, and in the future, this may finally become an officially-recognized feature of MC).
Back when I was desperately seeking some way to crawl out of the miserable pit that we fall into when we develop this disease, my GI doc failed to take biopsies during a colonoscopy exam. At the time I knew absolutely nothing about MC, and apparently neither did my GI doc, because during the exam, I could clearly see patches of minor to moderate inflammation in my colon on the monitor screen, and I even asked the doc what they were. He just shrugged, and mumbled something about them probably being left over discoloration from an infection of some type. Consequently, at the followup appointment, he informed me that (despite the fact that I was as sick as a dog) there was nothing wrong with me.
I also had virtually all of the symptoms of celiac disease (and I have the most common celiac gene), but I was never tested for celiac disease. That's what prompted me to begin keeping a food/reaction diary, permanently eliminate gluten from my diet, and begin experimenting with eliminating other foods from my diet in order to evaluate my response. After reaching remission by diet changes, I'm not about to do a gluten challenge and end up as sick as a dog again for months, just to make some doctor happy. Doctors wail loudly about patients who adopt a GF diet without seeking a celiac diagnosis first. But my response to that is that they need to come up with a reliable and accurate diagnostic tool, because currently, the average time from the onset of symptoms to an official diagnosis of celiac disease in this country is 9.7 years, and only approximately 5 % of celiacs are ever diagnosed. Ever.
One reason for this sad situation is that doctors fail to test for celiac disease at the first complaint of diarrhea. Instead, they resort to testing as a final afterthought, after ruling out all of the other inflammatory bowel diseases that are typically treated by expensive drugs. That's absolutely pathetic. Obviously they don't take celiac disease or gluten sensitivity in general, seriously. It almost seems that they try to avoid diagnosing any disease that can be treated by diet changes, because there's no money in it for them, or for their partners in the drug industry. They desperately need to get their act together if they want to be taken seriously by their patients.
Anyway, to get back to my story, a year or so later, as I was researching my symptoms on the internet, I came across Dr. Fine's description of exactly the same pattern of the appearance of minor inflammation of the mucosa of the colon that I saw on the monitor screen during my own colonoscopy, and I learned how it was a marker of MC that most doctors totally overlook during a colonoscopy exam. After adding up all the information that I had learned, and applying all the diet changes that my diary indicated, I began a very limited diet, and I was soon in remission, thus proving that my suspicions were correct.
Since then, when dealing with doctors and/or hospitals, my claims that I am sensitive to gluten and several other foods, have never been disputed, and whenever I have been admitted to a hospital for surgery or whatever, they have provided me with the services of their nutritionists to help with meal planning around my diet sensitivities. So a lack of an "official" diagnosis has been a moot point for me. Maybe I have just been lucky though, and if I lived in some other part of the country my food sensitivities might have been ignored by hospital staff.
This board has several other members who prefer to avoid the use of drugs whenever possible, and who apparently have no regrets about never pursuing an official diagnosis.
Still, it's not a decision to be taken lightly, so all the pros and cons should be weighed before making a decision. Personally, I just wish that I had 1 % of all the money wasted in this country on the drug treatments prescribed by doctors for treating MC, that didn't work, simply because the doctors insisted that diet has nothing to do with treating MC.
Compared with drugs, treatment by diet is extremely economical, because we have to eat, anyway.
You're very welcome, and again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. That's a very good question, and the answer "depends". If/when it's necessary to seek medical help with related issues in the future, sometimes an official diagnosis can make life a lot easier when dealing with doctors and the health care system in general, because if it's on your record, they normally will not question a diagnosis. For example, if you should ever seek a prescription for a corticosteroid to treat an MC flare, there would be no official medical basis for issuing such a prescription, so your request would almost certainly be declined. And doctors and other health care professionals tend to have a jaundiced attitude toward patients who claim to have a disorder or disease, but either did not meet the diagnostic criteria, or never bothered to pursue a diagnosis (they probably view that as a form of shunning their services).
That said, since treatment by diet is not a part of the official protocol for medical treatment of MC, an official prescription would be of academic interest only (unless additional testing, drug prescriptions, or other services might be needed in the future). Since the official medical description of MC includes no association whatsoever with food sensitivities, a diagnosis would be of little benefit for sorting out diet issues (though a few medical practitioners are indeed beginning to recognize the diet connection, and in the future, this may finally become an officially-recognized feature of MC).
Back when I was desperately seeking some way to crawl out of the miserable pit that we fall into when we develop this disease, my GI doc failed to take biopsies during a colonoscopy exam. At the time I knew absolutely nothing about MC, and apparently neither did my GI doc, because during the exam, I could clearly see patches of minor to moderate inflammation in my colon on the monitor screen, and I even asked the doc what they were. He just shrugged, and mumbled something about them probably being left over discoloration from an infection of some type. Consequently, at the followup appointment, he informed me that (despite the fact that I was as sick as a dog) there was nothing wrong with me.
I also had virtually all of the symptoms of celiac disease (and I have the most common celiac gene), but I was never tested for celiac disease. That's what prompted me to begin keeping a food/reaction diary, permanently eliminate gluten from my diet, and begin experimenting with eliminating other foods from my diet in order to evaluate my response. After reaching remission by diet changes, I'm not about to do a gluten challenge and end up as sick as a dog again for months, just to make some doctor happy. Doctors wail loudly about patients who adopt a GF diet without seeking a celiac diagnosis first. But my response to that is that they need to come up with a reliable and accurate diagnostic tool, because currently, the average time from the onset of symptoms to an official diagnosis of celiac disease in this country is 9.7 years, and only approximately 5 % of celiacs are ever diagnosed. Ever.
One reason for this sad situation is that doctors fail to test for celiac disease at the first complaint of diarrhea. Instead, they resort to testing as a final afterthought, after ruling out all of the other inflammatory bowel diseases that are typically treated by expensive drugs. That's absolutely pathetic. Obviously they don't take celiac disease or gluten sensitivity in general, seriously. It almost seems that they try to avoid diagnosing any disease that can be treated by diet changes, because there's no money in it for them, or for their partners in the drug industry. They desperately need to get their act together if they want to be taken seriously by their patients.
Anyway, to get back to my story, a year or so later, as I was researching my symptoms on the internet, I came across Dr. Fine's description of exactly the same pattern of the appearance of minor inflammation of the mucosa of the colon that I saw on the monitor screen during my own colonoscopy, and I learned how it was a marker of MC that most doctors totally overlook during a colonoscopy exam. After adding up all the information that I had learned, and applying all the diet changes that my diary indicated, I began a very limited diet, and I was soon in remission, thus proving that my suspicions were correct.
Since then, when dealing with doctors and/or hospitals, my claims that I am sensitive to gluten and several other foods, have never been disputed, and whenever I have been admitted to a hospital for surgery or whatever, they have provided me with the services of their nutritionists to help with meal planning around my diet sensitivities. So a lack of an "official" diagnosis has been a moot point for me. Maybe I have just been lucky though, and if I lived in some other part of the country my food sensitivities might have been ignored by hospital staff.
This board has several other members who prefer to avoid the use of drugs whenever possible, and who apparently have no regrets about never pursuing an official diagnosis.
Still, it's not a decision to be taken lightly, so all the pros and cons should be weighed before making a decision. Personally, I just wish that I had 1 % of all the money wasted in this country on the drug treatments prescribed by doctors for treating MC, that didn't work, simply because the doctors insisted that diet has nothing to do with treating MC.
Compared with drugs, treatment by diet is extremely economical, because we have to eat, anyway.You're very welcome, and again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
In my opinion, exact diagnosis is not a must have. ( albeit the health system in aus is quite different )
Whether it is mc, crohns, ulcerative colitis, ibs, etc etc.
most of the key principles of getting good management apply to all of these, being;
-gluten and dairy free diet,
- removal of any other trigger ingredients
- low sugar /low carb
- lifestyle changes
- low inflammation eating plan,
- mast cells/histamine management
Given your aim to use diet as the main management tool, having dx and gi specialist acceptance of the dx is also not a must have.
As not many doctors and specialists will acknowledge diet changes as a first line symptom reduction method.
You don't need a pathology report of dx to be part of this group.
Hope this helps
Whether it is mc, crohns, ulcerative colitis, ibs, etc etc.
most of the key principles of getting good management apply to all of these, being;
-gluten and dairy free diet,
- removal of any other trigger ingredients
- low sugar /low carb
- lifestyle changes
- low inflammation eating plan,
- mast cells/histamine management
Given your aim to use diet as the main management tool, having dx and gi specialist acceptance of the dx is also not a must have.
As not many doctors and specialists will acknowledge diet changes as a first line symptom reduction method.
You don't need a pathology report of dx to be part of this group.
Hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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I have no diagnosis. What I do have is a lifetime of digestive problems which no doctor was ever able to help with. By the time I found this site I had no faith in the ability of doctors to provide me any help nor did I see the point of undergoing a colonoscopy if the results were not going to effect how I treated myself. I was very willing to enact strict dietary changes and unwilling to throw away more of my money on useless doctor appointments and tests. I did do the Enterolab testing which validated the dietary approach I was taking and helped me fine tune it. If I needed or wanted to take prescription medication I would probably need an official diagnosis. Also sometimes it feels as if an official diagnosis would help validate my behavior in the eyes of others who may just think I'm a flake. The great thing about a dietary approach to disease is that you can do it entirely yourself, no doctor's order needed. And better yet, it works.
Jean
Jean
That's a good point, and I have no doubt it is quite correct.Lori wrote:I think you would need an official diagnosis, if you were to apply for disability benefits.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
If you aren't going to apply for disability benefits and decide you don't need an official diagnosis you could get a better return for your money getting Enterolab testing. At least that would directly address what's likely to be making you sick and what you are reacting to.
Just a thought.
Carol
Just a thought.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Hi Janet,
Like you, I searched for years. I had IBS with various ways of presenting itself - pain, huge spasms, etc. and a massive odd cough, so strong that I put my back out coughing - a cough unlike the cough of a cold, GERD, and vocal cord dysfunction. I was treated by allergists, I was sent to speech therapy to control my vocal cord issue, I could stack my prescription pages to the moon - I usually didn't fill them. The short story is that nothing helped.
The short story is that it turned out to all be one problem - food and MC.
Like most people here, I got very sick. Fortunately, my doctor was aware of MC. When I began with uncontrollable watery diarrhea, she did biopsies and there it was. She told me to "stay away" from gluten and dairy. Thankfully, I found this site because for most of us, staying away is not enough. Complete elimination is needed. I started Entocort around June 1 and I'm almost done weaning off.
I think I could have reached remission without Entocort IF I had the body of knowledge in advance that I have now.
There is a section at the top of the main message board called "stickies". I wrote what I would have done in hindsight. COMPLETE elimination takes time. Many common foods contain gluten.
I had the good fortune of a diagnosis so my path was clear. If you follow a high meat diet and eliminate likely triggers, that alone might answer you question. Enterolabs was recommended to me quite some time ago by a holistic physician. My insurance would not cover the testing so I declined. I have spent much more money figuring out my problem than the cost of the test AND my life has been more difficult than it would have otherwise been.
It's a process of discovery, Janet. The great thing about trying the diet is that, unlike drugs, the diet has no harmful side effects.
If you do try strict elimination, I recommend that you talk about it on this form. People will help you. Some ideas will suit you and some may apply less. We are all a bit different. Members pitch in and you pick and choose what you need.
Good luck
Like you, I searched for years. I had IBS with various ways of presenting itself - pain, huge spasms, etc. and a massive odd cough, so strong that I put my back out coughing - a cough unlike the cough of a cold, GERD, and vocal cord dysfunction. I was treated by allergists, I was sent to speech therapy to control my vocal cord issue, I could stack my prescription pages to the moon - I usually didn't fill them. The short story is that nothing helped.
The short story is that it turned out to all be one problem - food and MC.
Like most people here, I got very sick. Fortunately, my doctor was aware of MC. When I began with uncontrollable watery diarrhea, she did biopsies and there it was. She told me to "stay away" from gluten and dairy. Thankfully, I found this site because for most of us, staying away is not enough. Complete elimination is needed. I started Entocort around June 1 and I'm almost done weaning off.
I think I could have reached remission without Entocort IF I had the body of knowledge in advance that I have now.
There is a section at the top of the main message board called "stickies". I wrote what I would have done in hindsight. COMPLETE elimination takes time. Many common foods contain gluten.
I had the good fortune of a diagnosis so my path was clear. If you follow a high meat diet and eliminate likely triggers, that alone might answer you question. Enterolabs was recommended to me quite some time ago by a holistic physician. My insurance would not cover the testing so I declined. I have spent much more money figuring out my problem than the cost of the test AND my life has been more difficult than it would have otherwise been.
It's a process of discovery, Janet. The great thing about trying the diet is that, unlike drugs, the diet has no harmful side effects.
If you do try strict elimination, I recommend that you talk about it on this form. People will help you. Some ideas will suit you and some may apply less. We are all a bit different. Members pitch in and you pick and choose what you need.
Good luck
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janetcg2424
- Posts: 9
- Joined: Mon Dec 30, 2013 1:34 pm