Hi Cristi,
I have to fall in line and agree with what has already been said in this thread. As Polly says, the doctors don't want to validate any success that comes from a testing program that they are unaware of, and a diet that avoids your intolerances.
It's almost as if they feel threatened by a patient using a treatment that they did not recommend. They seem to be willing to risk their reputation just to discredit the treatment, simply because they don't understand it, (and obviously they don't want to learn about it--probably because they resent patients who imply that they might know more about the subject than the doctor himself, or herself).
Many doctors seem quick to suspect cancer. Five years ago, when I first went to a doctor with my symptoms, (uncontrollable diarrhea, etc.), the diagnosis was colon cancer. He didn't say "you might have cancer"--nope, he said "you have a tumor in your colon as big as a man's fist", and shook his fist in my face for emphasis. The GI he sent me to, examined me, and confirmed the diagnosis. However, they were both wrong, thank goodness.
When I had to have emergency surgery for a blockage, last November, the doctors weren't as theatrical with their performance, as my previous doctor had been, but it was pretty obvious that the surgeons expected to find cancer when they operated, and they definitely expected to see it in the biopsy report, on the section that was removed. They were wrong, also.
I do remember Karen's siituation with the indications of possible serious problems with her pancreas. Apparently those issues all disappeared, because not only is she doing just fine now, but she has resumed her running, and she entered a half-marathon a few months ago, and did quite well.
So, my point is, don't let your doctor stampede you into assuming that you have something really bad, just because your doctor thinks you do. On the other hand, I think if I were in your shoes, I might want to see what some additional tests showed, just in case, but I would approach it with the attitude that there's nothing wrong with you, unless proven otherwise. Suspicions don't count.
Tex
Doctor's reaction to Dr. Fine's tests
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Tex,
That's encouraging to hear your story and Karen's as well.
I guess I'll just play it as it comes. If the test sounds reasonable and it's not too intrusive, I'll probably do it. The one that concerns me the most is one were I go into the hospital for a two day fast. I'm having terrible problems maintaining the little weight that I have left (never in my wildest dreams did I ever think I would have this problem). I'm eating much more then I did before I got sick (close to 2000 caleries a day) and i'm not gaining an ounce. So that test just sounds crazy to me.
My appointment is Tuesday so I'll let you know how it goes.
Thanks,
Cristi
That's encouraging to hear your story and Karen's as well.
I guess I'll just play it as it comes. If the test sounds reasonable and it's not too intrusive, I'll probably do it. The one that concerns me the most is one were I go into the hospital for a two day fast. I'm having terrible problems maintaining the little weight that I have left (never in my wildest dreams did I ever think I would have this problem). I'm eating much more then I did before I got sick (close to 2000 caleries a day) and i'm not gaining an ounce. So that test just sounds crazy to me.
My appointment is Tuesday so I'll let you know how it goes.
Thanks,
Cristi
Cristi,
I have to agree with you about that two day fast. Testing for diabetes by inducing insulin shock, (hypoglycemia), sounds kinda like checking for heart disease by inducing a heart attack.
It gets back to the old problem of doctors testing for something specific, without considering the overall condition of the patient. House speaker Tip O'Neal might still be alive today, if his doctor hadn't given him that stress test.
The risk of major complications is probably pretty slim, since they can get glucose into your system in a matter of just a few seconds, if needed, but you're right, it probably won't do much to help your weight.
Tex
I have to agree with you about that two day fast. Testing for diabetes by inducing insulin shock, (hypoglycemia), sounds kinda like checking for heart disease by inducing a heart attack.
It gets back to the old problem of doctors testing for something specific, without considering the overall condition of the patient. House speaker Tip O'Neal might still be alive today, if his doctor hadn't given him that stress test.
The risk of major complications is probably pretty slim, since they can get glucose into your system in a matter of just a few seconds, if needed, but you're right, it probably won't do much to help your weight.
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.
Cristi,
You know, that's what bugged me when they gave me all those tests five years ago. I got down to hide and bones at one point, just before they did their last test, but despite all the tests, they never found anything wrong with me. By then, I was such a pathetic looking wretch, that most of the nurses felt sorry for me, but my GI didn't give a hoot. LOL.
I actually wondered for a while, if I was nearing the end, but after they finally turned me loose, I managed to get my digestive system started again, and I slowly gained back most of the weight that I had lost.
You're most welcome,
Tex
You know, that's what bugged me when they gave me all those tests five years ago. I got down to hide and bones at one point, just before they did their last test, but despite all the tests, they never found anything wrong with me. By then, I was such a pathetic looking wretch, that most of the nurses felt sorry for me, but my GI didn't give a hoot. LOL.
I actually wondered for a while, if I was nearing the end, but after they finally turned me loose, I managed to get my digestive system started again, and I slowly gained back most of the weight that I had lost.
You're most welcome,
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.
Cristi,
I, for one, would be interested in knowing exactly WHICH tests this doc will advise.
Perhaps you will be able to tell us about those, and repeat to us the explanations as to why those are recommended.
From what you've written thus far, I get the impression that they are following up on some of your lab results that you've mentioned here, along with the clinical findings when they've seen you. Is this your understanding? I really can't put it all together, but perhaps the appointment will give you more understanding.
Yours, Luce
I, for one, would be interested in knowing exactly WHICH tests this doc will advise.
Perhaps you will be able to tell us about those, and repeat to us the explanations as to why those are recommended.
From what you've written thus far, I get the impression that they are following up on some of your lab results that you've mentioned here, along with the clinical findings when they've seen you. Is this your understanding? I really can't put it all together, but perhaps the appointment will give you more understanding.
Yours, Luce
Oh, and Cristi, you are wise to be attending a celiac support group. Did you find many symtoms in common? One thing they may have that most MC'rs don't seem to have is constipation, and they tend to alternate back and forth.
I attend periodic celiac support meetings, and I remember what a release it was to see and hear tales that I could identify with so much, but more importantly, the more advanced dieters looked so healthy compared to the newbies, so that gave lots of hope. Also, ours is huge, so we have many with M.C. as well.
By the way, where did you attend your meeting? When you spoke of it, it sounded as though your group is small enough that there's lots of time for discussion among your selves -- is that correct? How long has your group been in existence?
Yours, Luce
I attend periodic celiac support meetings, and I remember what a release it was to see and hear tales that I could identify with so much, but more importantly, the more advanced dieters looked so healthy compared to the newbies, so that gave lots of hope. Also, ours is huge, so we have many with M.C. as well.
By the way, where did you attend your meeting? When you spoke of it, it sounded as though your group is small enough that there's lots of time for discussion among your selves -- is that correct? How long has your group been in existence?
Yours, Luce
Cristi,
I've never found a single conventional doctor that will treat the whole person, and frequently they have dismissed my concerns - like the fact that certain symptoms were triggered by food. Many of them are compassionate and kind, but they are simply trained to treat symptoms, not causes and to focus on their particular area. So I try not to have high expectations when I see a conventional doctor.
At the same time, I gained highly valuable information from the conventional tests I had done----colonoscopy, endoscopy, dexa scan, blood test for h. pylori. I wouldn't never have known my true health challenges without these tests.
I've seen several natural health care practitioners, and a number of them were not equipped to deal with the complexity of my illness, which goes beyond MC alone, mild in my case. In the end, I worked with a medical doctor trained in integrative medicine, and when it came time to do heavy metal detox I began working with a naturopathic doctor. My most positive experiences have been with these two doctors, but they weren't able to find the causes on their own either.
What worked for me in the end is using conventional medicine for testing and natural medicine for treatment, all the while doing my own research and taking charge of my own health plan.
Good luck! Celia
I've never found a single conventional doctor that will treat the whole person, and frequently they have dismissed my concerns - like the fact that certain symptoms were triggered by food. Many of them are compassionate and kind, but they are simply trained to treat symptoms, not causes and to focus on their particular area. So I try not to have high expectations when I see a conventional doctor.
At the same time, I gained highly valuable information from the conventional tests I had done----colonoscopy, endoscopy, dexa scan, blood test for h. pylori. I wouldn't never have known my true health challenges without these tests.
I've seen several natural health care practitioners, and a number of them were not equipped to deal with the complexity of my illness, which goes beyond MC alone, mild in my case. In the end, I worked with a medical doctor trained in integrative medicine, and when it came time to do heavy metal detox I began working with a naturopathic doctor. My most positive experiences have been with these two doctors, but they weren't able to find the causes on their own either.
What worked for me in the end is using conventional medicine for testing and natural medicine for treatment, all the while doing my own research and taking charge of my own health plan.
Good luck! Celia
I beleive in magic!
HI Everyone,
I sure am glad to hear about the weight coming back. Right now I avoid mirrors bacause it's too scary to see myself like that. You're right about the celiac group...even tho it's small, some were skinny and most were at a healthier weight.
The tests that I'm possitive she wants are; an iodine uptake test for my thyroid....it's sub clinical...slightly hyper: several tests to determine why my pancreas is not producing the correct amount of insulin...she suspects an insolinoma on the pancreas ( I doubt there's anything to this) : Lastly, some tests to determine whats going on with my adrenal glands..MY DHEA is very low and my cortisol is just plain weird... too low sometimes and spiking at other random times. She wants to do tests to make sure there is nothing going on in my pituitary gland or hypothalmus.
I believe she's going to send my to another endocrinologist to do these.
My naturopath says after I get all of these tests and they show nothing , that she will treat me with pregnenolone(sp?) and DHEA ....because then they will assume its adrenal fatigue.
So I think you guys are right in that I have to use conventional doctors for the tests (as long as they arn't too crazy) and then let a naturopath treat me. Conventional medicicne won't treat me anyway. Even tho my lab tests were weird, the only thing my first endocrinologist said was that I didn't have addisons so I was fine.
So I will learn more on Tuesday. I just got nervous when she mentioned the fasting part. I don't think they believe me when I tell them I'm eating a lot of food.....more than I ate when i was a healthy, active 145 lb. woman. Frankly that's the part that is confusing me too , as you're supposed to be gaining weight with adrenal fatigue.
Thanks for all the input...I will keep you updated as to what happens on Tuesday.
Cristi
I sure am glad to hear about the weight coming back. Right now I avoid mirrors bacause it's too scary to see myself like that. You're right about the celiac group...even tho it's small, some were skinny and most were at a healthier weight.
The tests that I'm possitive she wants are; an iodine uptake test for my thyroid....it's sub clinical...slightly hyper: several tests to determine why my pancreas is not producing the correct amount of insulin...she suspects an insolinoma on the pancreas ( I doubt there's anything to this) : Lastly, some tests to determine whats going on with my adrenal glands..MY DHEA is very low and my cortisol is just plain weird... too low sometimes and spiking at other random times. She wants to do tests to make sure there is nothing going on in my pituitary gland or hypothalmus.
I believe she's going to send my to another endocrinologist to do these.
My naturopath says after I get all of these tests and they show nothing , that she will treat me with pregnenolone(sp?) and DHEA ....because then they will assume its adrenal fatigue.
So I think you guys are right in that I have to use conventional doctors for the tests (as long as they arn't too crazy) and then let a naturopath treat me. Conventional medicicne won't treat me anyway. Even tho my lab tests were weird, the only thing my first endocrinologist said was that I didn't have addisons so I was fine.
So I will learn more on Tuesday. I just got nervous when she mentioned the fasting part. I don't think they believe me when I tell them I'm eating a lot of food.....more than I ate when i was a healthy, active 145 lb. woman. Frankly that's the part that is confusing me too , as you're supposed to be gaining weight with adrenal fatigue.
Thanks for all the input...I will keep you updated as to what happens on Tuesday.
Cristi
Cristi,
Your naturopath is probably correct. I think you'll find this to be very interesting reading.
http://www.mercola.com/2000/aug/27/adrenals.htm
I think that this is an excellent article. Notice especially, the comments about Balancing Your Meals For Blood Sugar Control, toward the end of the article
Tex
Your naturopath is probably correct. I think you'll find this to be very interesting reading.
http://www.mercola.com/2000/aug/27/adrenals.htm
I think that this is an excellent article. Notice especially, the comments about Balancing Your Meals For Blood Sugar Control, toward the end of the article
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.
Tex , you are certainly the man with the info,
I love this site....sign me up for the pregnenolone....and no major side effects too. The blood sugar part was interesting too...I had started doing some of those things already just from listening to my body. This makes me feel great about my naturopath (I love her anyway). Sounds like she is on the right track.
Thanks Tex,
Cristi
I love this site....sign me up for the pregnenolone....and no major side effects too. The blood sugar part was interesting too...I had started doing some of those things already just from listening to my body. This makes me feel great about my naturopath (I love her anyway). Sounds like she is on the right track.
Thanks Tex,
Cristi
Cristi,
If there is a way they can check your pituitary and you hypothalamus without being too invasive, I think that's great. The HPA Axis is often involved with fibromyalgia and chronic fatigue, so it would be interesting to find out.
I'm sure you will gain weight! Keep the faith!
Good luck, Celia
If there is a way they can check your pituitary and you hypothalamus without being too invasive, I think that's great. The HPA Axis is often involved with fibromyalgia and chronic fatigue, so it would be interesting to find out.
I'm sure you will gain weight! Keep the faith!
Good luck, Celia
I beleive in magic!
Thanks Celia,
I keep eating....it's much easier than it used to be as my nausia is getting less and less.....YIPPY! But the scale has yet to budge...I"ll keep the faith that it will soon.
I'm hoping the test isn't too invasive and will do it if I think it won't set me back a lot. I'll know more tuesday and will let you know.
Thanks,
Cristi
I keep eating....it's much easier than it used to be as my nausia is getting less and less.....YIPPY! But the scale has yet to budge...I"ll keep the faith that it will soon.
I'm hoping the test isn't too invasive and will do it if I think it won't set me back a lot. I'll know more tuesday and will let you know.
Thanks,
Cristi
-
moremuscle
- Rockhopper Penguin
- Posts: 706
- Joined: Wed May 25, 2005 6:16 am
- Location: South Carolina
Hi Cristi,
I am late to this discussion - I am Karen (moremuscle). I am glad to meet you. I only have a little time right now to post a short response; I haven't read anything else from you so I don't know your situation very well. I just wanted to let you know that I am alive and well LOL!! I am VERY WELL - I feel extremely good, healthy, and strong. My weight is completely stabil and as far as I know there is nothing wrong with my pancreas. But in the summer of 2004 when I was diagnosed with MC my doctor did a lot of testing right fast to figure out what was wrong with me. One of the things he came up with was a mild enlargement of the pancreas. I went as far as to having a CT scan (his recommendation) to see if the pathologist could see anything abnormal (blockage or similar). After the CT scan the results were evidently not conclusive and he (GI) recommended another test, which today I no longer remember the name of, but an invasive test that 20% of all patients undergoing the test react to with pancreatis (is that the word). The 20% risk factor alarmed me and I was 99% sure I was gluten sensitive - at the time I still didn't have the results of DR. Fine's tests in my hands but my mother has been celiac for 15 years - I knew from discussing my symptoms with her that they were very similar and I knew the genetic factor is there. My GI was kind enough to let me know (after I asked directly) that he had in fact not found any signs of cancer in any of the tests we had done thus far - and that he did not suspect pancreatic cancer. Also upon direct questions from me he responded that the pancreatic test he suggested was not urgent. Given the information I had and going GF immidiately I decided to wait 1/2 year before reconsidering the invasive, risky test unless something dramatic changed in my condition. I need to add that I had not the slightest kind of pain or discomfort associated with my pancreas.
Your situation is not quite like mine but you can still ask some direct questions to your doctor that will answer some of your questions. Write your questions down before you go in and ask that he/she take their time to discuss this with you. Remind them that they are asking you to undergo some very sirious testing and that the issue is of utmost importance to you. You have a right to understand all aspects of the tests, all risk factors, all potential benefits, treatment possibilities etc etc. Are there any deadlines? Are you in a rush to make a decision? Are there alternative tests that would give similar information?
I was lucky that I made the right decision - I feel I made an informed decision but was I scared? OH, YES - I was frightened. It was the first time in my life I had to make a decision that big.
Love,
Karen
I am late to this discussion - I am Karen (moremuscle). I am glad to meet you. I only have a little time right now to post a short response; I haven't read anything else from you so I don't know your situation very well. I just wanted to let you know that I am alive and well LOL!! I am VERY WELL - I feel extremely good, healthy, and strong. My weight is completely stabil and as far as I know there is nothing wrong with my pancreas. But in the summer of 2004 when I was diagnosed with MC my doctor did a lot of testing right fast to figure out what was wrong with me. One of the things he came up with was a mild enlargement of the pancreas. I went as far as to having a CT scan (his recommendation) to see if the pathologist could see anything abnormal (blockage or similar). After the CT scan the results were evidently not conclusive and he (GI) recommended another test, which today I no longer remember the name of, but an invasive test that 20% of all patients undergoing the test react to with pancreatis (is that the word). The 20% risk factor alarmed me and I was 99% sure I was gluten sensitive - at the time I still didn't have the results of DR. Fine's tests in my hands but my mother has been celiac for 15 years - I knew from discussing my symptoms with her that they were very similar and I knew the genetic factor is there. My GI was kind enough to let me know (after I asked directly) that he had in fact not found any signs of cancer in any of the tests we had done thus far - and that he did not suspect pancreatic cancer. Also upon direct questions from me he responded that the pancreatic test he suggested was not urgent. Given the information I had and going GF immidiately I decided to wait 1/2 year before reconsidering the invasive, risky test unless something dramatic changed in my condition. I need to add that I had not the slightest kind of pain or discomfort associated with my pancreas.
Your situation is not quite like mine but you can still ask some direct questions to your doctor that will answer some of your questions. Write your questions down before you go in and ask that he/she take their time to discuss this with you. Remind them that they are asking you to undergo some very sirious testing and that the issue is of utmost importance to you. You have a right to understand all aspects of the tests, all risk factors, all potential benefits, treatment possibilities etc etc. Are there any deadlines? Are you in a rush to make a decision? Are there alternative tests that would give similar information?
I was lucky that I made the right decision - I feel I made an informed decision but was I scared? OH, YES - I was frightened. It was the first time in my life I had to make a decision that big.
Love,
Karen
Inspired by the paleolithic diet and lifestyle -
living w/o gluten, dairy, soy, corn, and yeast.
living w/o gluten, dairy, soy, corn, and yeast.
HI Karen,
Thanks for your story. It helps to know other people have been through scary times and come out fine on the other side.
I will try to be as informed as possible about all these tests. It is hard to be rational when this has been the most stressful time of my life. They start talking and I feel the panic choking me. But I need to be a grown up and be present in this decision. I'm not powerless and I need to keep repeating that to myself.
Thanks for the support Karen,
Cristi
Thanks for your story. It helps to know other people have been through scary times and come out fine on the other side.
I will try to be as informed as possible about all these tests. It is hard to be rational when this has been the most stressful time of my life. They start talking and I feel the panic choking me. But I need to be a grown up and be present in this decision. I'm not powerless and I need to keep repeating that to myself.
Thanks for the support Karen,
Cristi