Good Morning Everyone,
I was just wondering how your Doctors reacted to Dr. Fine's gluten testing results. I've told my doctors that I was getting these tests done and that I was going to eliminate gluten from my diet. They just didn't say anything possitive or negative. Now that I have the results...I'm wondering if I should expect support from them.
I'm also wondering if I should wait a month and re test my bloodwork that showed my DHEA was too low and my blood sugar was too low to see if the lack of gluten makes any difference.
So any ideas on how I should approach my doctors with these things?
thanks,
Cristi
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
-
barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Cristi-------U might be on a mission to educate your doctors!!! 
There is only one way---diplomacy and just show/tell them how U went about further checking yourself!!!
We ARE in control of our bodies!!!!!
Good Luck on your mission
luve Barbara
There is only one way---diplomacy and just show/tell them how U went about further checking yourself!!!
We ARE in control of our bodies!!!!!
Good Luck on your mission
luve Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Hi Cristi,
Most doctors don't have a clue about Dr. Fine's tests. Did you see this thread?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=3668
I really don't know what to think about retesting in a month. It might be interesting to see if there is a difference. Of course, those test values can be different even when samples are drawn at different times of the day.
Tex
Most doctors don't have a clue about Dr. Fine's tests. Did you see this thread?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=3668
I really don't know what to think about retesting in a month. It might be interesting to see if there is a difference. Of course, those test values can be different even when samples are drawn at different times of the day.
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.
Thanks Tex and Barbara,
I had missed that earlier discussion. I've had a lot of frustrating times with doctors lately that selfishly I don't want to bother with trying to educate them. But then I think of someone with this condition not getting the correct info and i feel embarrassed. So I will try to talk to them....and who knows....maybe they will listen.
Thanks,
Cristi
I had missed that earlier discussion. I've had a lot of frustrating times with doctors lately that selfishly I don't want to bother with trying to educate them. But then I think of someone with this condition not getting the correct info and i feel embarrassed. So I will try to talk to them....and who knows....maybe they will listen.
Thanks,
Cristi
Cristi,
I'm sorta the same way--if they seem willing to listen, I'll talk. If they don't seem open to learning anything new, then I don't waste my time arguing.
After my surgery, last November, (to remove a blockage caused by a stenosis in my sigmoid colon), I wasn't allowed to eat anything for a couple of days, (everything came through an IV), and when the time came to start eating, so as to restart my digestive system, I mentioned that I was intolerant of gluten, corn and casein. I was absolutely amazed at the way they were willing to jump through hoops to accomodate me. They never asked me why my records didn't show any of those intolerances, (the GI that tested me at their clinic, about five years earlier, never disconvered those little details), so I didn't bother to tell them that I figured it out myself, and that Dr. Fine's lab confirmed the gluten sensitivity from an analysis of a stool sample.
Surprisingly, they didn't have a menu to accomodate even celiacs, (let alone other intolerances), but the chief resident immediately posted orders on my chart to allow me to specify my own diet, rather than to use their usual program for restarting my digestive system. Their head dietitian came to my room not once, but several times, to discuss items on their menu, and to verify that I was not having any problems with the selections that we agreed on.
I thought that was pretty nice of them, and everything went well. If they had refused to alter their program, and insisted that I eat gluten, I reckon I would have been pretty hungry, by the time they let me go home. LOL. As it was, they let me go home two days early, (four days after surgery, instead of six), because I seemed to be doing ok, and they were concerned about accidentally feeding me something that I couldn't tolerate.
As Polly says, it's the specialists, (especially GI docs), who tend to hard-headed and overly defensive of what they consider to be their turf.
Tex
P S I can eat casein and corn now, without any apparent problems. I've been GF now for almost four years.
I'm sorta the same way--if they seem willing to listen, I'll talk. If they don't seem open to learning anything new, then I don't waste my time arguing.
After my surgery, last November, (to remove a blockage caused by a stenosis in my sigmoid colon), I wasn't allowed to eat anything for a couple of days, (everything came through an IV), and when the time came to start eating, so as to restart my digestive system, I mentioned that I was intolerant of gluten, corn and casein. I was absolutely amazed at the way they were willing to jump through hoops to accomodate me. They never asked me why my records didn't show any of those intolerances, (the GI that tested me at their clinic, about five years earlier, never disconvered those little details), so I didn't bother to tell them that I figured it out myself, and that Dr. Fine's lab confirmed the gluten sensitivity from an analysis of a stool sample.
Surprisingly, they didn't have a menu to accomodate even celiacs, (let alone other intolerances), but the chief resident immediately posted orders on my chart to allow me to specify my own diet, rather than to use their usual program for restarting my digestive system. Their head dietitian came to my room not once, but several times, to discuss items on their menu, and to verify that I was not having any problems with the selections that we agreed on.
I thought that was pretty nice of them, and everything went well. If they had refused to alter their program, and insisted that I eat gluten, I reckon I would have been pretty hungry, by the time they let me go home. LOL. As it was, they let me go home two days early, (four days after surgery, instead of six), because I seemed to be doing ok, and they were concerned about accidentally feeding me something that I couldn't tolerate.
As Polly says, it's the specialists, (especially GI docs), who tend to hard-headed and overly defensive of what they consider to be their turf.
Tex
P S I can eat casein and corn now, without any apparent problems. I've been GF now for almost four years.
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.
Hi Wayne,
I'm so glad you came through the surgery so well and that they were so helpful with your diet needs. It's encouraging to hear that there's a possibility of adding back some foods down the road. My allergines besides gluten and dairy(which scored high) were egg 10, soy 14, and yeast 19. Sense the cut off was 10 , i'm hoping maybe to get some of them back later. Sounds like only time will tell.
Thanks,
Cristi
I'm so glad you came through the surgery so well and that they were so helpful with your diet needs. It's encouraging to hear that there's a possibility of adding back some foods down the road. My allergines besides gluten and dairy(which scored high) were egg 10, soy 14, and yeast 19. Sense the cut off was 10 , i'm hoping maybe to get some of them back later. Sounds like only time will tell.
Thanks,
Cristi
Wayne, you were lucky! When I was in the hospital over a year ago, my family doctor wrote down no soy, yeast, dairy, gluten for my diet... the dietician came to my room and asked for "proof" that I needed to have a diet without those things.. then told me that I should eat what the gastro consult said to and submit to HIS tests! They then sent me a soyburger!
I was furious and wrote a letter to the hospital! They did apologize and promised it would never happen again... have not been back in that hospital since..
grannyh
I was furious and wrote a letter to the hospital! They did apologize and promised it would never happen again... have not been back in that hospital since..
grannyh
Grannyh,
Wow! That was a bad experience. Either the dietitian or the gastro consultant, (or maybe both), must have been a real prima donna.
Tex
Wow! That was a bad experience. Either the dietitian or the gastro consultant, (or maybe both), must have been a real prima donna.
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.
-
MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning All,
When I was in for the cardio cath in February they were great accomodating my GF diet, veganism and my other intolerances. The dietician me with me and they tried their best and she is trying to develop a GF menu for celiacs at the hospital. My fare was mashed potatoes or boiled potatoes at each meal including breakfast. Worked for me but was glad to get back home and have Frank accomodate my diet.
Maggie
When I was in for the cardio cath in February they were great accomodating my GF diet, veganism and my other intolerances. The dietician me with me and they tried their best and she is trying to develop a GF menu for celiacs at the hospital. My fare was mashed potatoes or boiled potatoes at each meal including breakfast. Worked for me but was glad to get back home and have Frank accomodate my diet.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Hmm, I think that if someone had demanded proof of my food reactions, I would've been sorely tempted to eat the allergens, and then send 'em a bag of the results -- not on ice, either! Ha!
I would imagine that there are many people who just find out along the way without any testing, that they can't eat certain foods, so why wouldn't THAT be as good evidence as anything? What gives we people saying things like that, anyway?!
My endochrinologist has been working with me, and has done various blood tests related to my malabsorption based on my report of gluten problems. He knows that I was unwilling to go back on gluten and make myself sick again in so doing just to get a diagnosis with a small bowel biopsy, and that's basically all I told him about testing.
I told him there was no way I would ever eat that stuff again, and that was it. I think he's smart enough to realize that no one would stick with it unless it'd made a difference, and he did know I'd had M.C. Wouldn't surprise me if he wasn't up on Dr. Fine's research as well, and just waiting for some studies to show up in the journals.
Perhaps they are more convinced when they think that patients have just figured this out by themselves, by trial.
Other than the need for lab measurements of nutrients not being adequately absorbed, etc. I'm not sure what you need support from the docs for, unless of course, you suspect something else is wrong that certainly would need their evaluation.
Mistakes I think that I made were not having my bone density done right away, and not
making up for the calcium and VitD that I was no longer getting from fortified dairy.
Same goes for the Vit B 12/folate as before gf, I'd been eating fortified breads and other things made with fortified flour.
I had to go have the thyroid tests regularly since I have no thyroid gland, so have to visit the laboratory regularly anyway. Helps that this guy is a metabolic and bone expert anyway -- how lucky was that?! Got involved with his office as the second opinion when I was about to have my thyroid out. He continued to monitor my levels and order the two thyroid meds from then on.
Think what I'm driving at is that it may be more helpful to emphasize that you notice a definite result in the way you feel, etc., while off of gluten, even if you aren't certain where tiny amounts of it may be lerking in your current learning, and that you plan on staying gf and other allergen-free for life.
That may be what it takes to cause them to go along with the plan.
I'm so sleepy now, I have no idea what I just wrote! Ha!
Good night!
Luce
I would imagine that there are many people who just find out along the way without any testing, that they can't eat certain foods, so why wouldn't THAT be as good evidence as anything? What gives we people saying things like that, anyway?!
My endochrinologist has been working with me, and has done various blood tests related to my malabsorption based on my report of gluten problems. He knows that I was unwilling to go back on gluten and make myself sick again in so doing just to get a diagnosis with a small bowel biopsy, and that's basically all I told him about testing.
I told him there was no way I would ever eat that stuff again, and that was it. I think he's smart enough to realize that no one would stick with it unless it'd made a difference, and he did know I'd had M.C. Wouldn't surprise me if he wasn't up on Dr. Fine's research as well, and just waiting for some studies to show up in the journals.
Perhaps they are more convinced when they think that patients have just figured this out by themselves, by trial.
Other than the need for lab measurements of nutrients not being adequately absorbed, etc. I'm not sure what you need support from the docs for, unless of course, you suspect something else is wrong that certainly would need their evaluation.
Mistakes I think that I made were not having my bone density done right away, and not
making up for the calcium and VitD that I was no longer getting from fortified dairy.
Same goes for the Vit B 12/folate as before gf, I'd been eating fortified breads and other things made with fortified flour.
I had to go have the thyroid tests regularly since I have no thyroid gland, so have to visit the laboratory regularly anyway. Helps that this guy is a metabolic and bone expert anyway -- how lucky was that?! Got involved with his office as the second opinion when I was about to have my thyroid out. He continued to monitor my levels and order the two thyroid meds from then on.
Think what I'm driving at is that it may be more helpful to emphasize that you notice a definite result in the way you feel, etc., while off of gluten, even if you aren't certain where tiny amounts of it may be lerking in your current learning, and that you plan on staying gf and other allergen-free for life.
That may be what it takes to cause them to go along with the plan.
I'm so sleepy now, I have no idea what I just wrote! Ha!
Good night!
Luce
Hi Luce,
I simply get the clear impression that I'm being totally dismissed. It wouldn't matter except that I have some strange lab numbers coming back which confirm a lot of my symptoms. My adrenal glands are putting out sub clinical numbers and my blood fasting number is very low. Also my tsh is stightly low making me slightly hyperthyroid.
All of these symptoms ocurred right after my surgery along with the lymphocytic colitis. It seems reasonable to me that they are all related somehow. Yet most of the doctors I've seen refuse to look at the whole person . They focus on just one thing. The first endocrinologist that I saw first accused me of having an eating disorder (many people with microscopic colitis lose a bunch of weight at first), then when on to tell me i should prepare myself that I probably had cancer. This was in the first 10 minutes of meeting me...without having examined me or performed any tests.
So while I want my doctors to rule out serious diseases, I also want them to consider that stress from this disease or an immune response to gluten could be a factor in all the problems I'm having.
So I'm trying to decide if I continue down this road with these tests or do I stop going to the doctors for a couple of months and see if I improve simply by eliminating gluten or do I take both roads...more tests and just keep eliminating gluten.
I had thought that when I had Dr. Fines test results to show them that they would suddenly take this gluten thing more seriously. Didn't happen.
Good thing I have all of you for support or I'd be really confused.
Thanks,
Cristi
I simply get the clear impression that I'm being totally dismissed. It wouldn't matter except that I have some strange lab numbers coming back which confirm a lot of my symptoms. My adrenal glands are putting out sub clinical numbers and my blood fasting number is very low. Also my tsh is stightly low making me slightly hyperthyroid.
All of these symptoms ocurred right after my surgery along with the lymphocytic colitis. It seems reasonable to me that they are all related somehow. Yet most of the doctors I've seen refuse to look at the whole person . They focus on just one thing. The first endocrinologist that I saw first accused me of having an eating disorder (many people with microscopic colitis lose a bunch of weight at first), then when on to tell me i should prepare myself that I probably had cancer. This was in the first 10 minutes of meeting me...without having examined me or performed any tests.
So while I want my doctors to rule out serious diseases, I also want them to consider that stress from this disease or an immune response to gluten could be a factor in all the problems I'm having.
So I'm trying to decide if I continue down this road with these tests or do I stop going to the doctors for a couple of months and see if I improve simply by eliminating gluten or do I take both roads...more tests and just keep eliminating gluten.
I had thought that when I had Dr. Fines test results to show them that they would suddenly take this gluten thing more seriously. Didn't happen.
Good thing I have all of you for support or I'd be really confused.
Thanks,
Cristi
-
artteacher
- Rockhopper Penguin
- Posts: 731
- Joined: Wed Aug 24, 2005 11:13 pm
.
Hi Cristi,
I've sat in the car, in the doctor's parking lot and cried. I'm pretty sure lots of people here have. You get your hopes up that finally someone will have some answers for you, and they let you down and insult you while they do it.
When is your next doctor appointment, or testing? What's the doctor's game plan? More tests, or visits to specialists?
I hope you feel the support you have here. I'm thinking about you . .
Love, Marsha
I've sat in the car, in the doctor's parking lot and cried. I'm pretty sure lots of people here have. You get your hopes up that finally someone will have some answers for you, and they let you down and insult you while they do it.
When is your next doctor appointment, or testing? What's the doctor's game plan? More tests, or visits to specialists?
I hope you feel the support you have here. I'm thinking about you . .
Love, Marsha
Hi Marsha,
I go in next Tues. to see my general doctor...who wants me to see an endocrinologist because she suspects I have an insolinoma on my pancreas. This is really rare....so I'm very doudtful....but she also scares me into looking into it . She also wants me to have tests to determine if I have a tumor in my pituatary gland or hypothalmus.
So I feel irresponsible not going through with these tests. But I also hear everything you all have gone through...and it seems to suggest that this gluten stuff messes up a lot of your body and it simply needs time without the gluten to heal.
Even if she just said lets rule out the bad stuff and then we'll focus on healing you based on gluten being the culprit ....it would be easier for me to get on board.
Oh well, we have each other. We know this is real.
Thanks,
Cristi
I go in next Tues. to see my general doctor...who wants me to see an endocrinologist because she suspects I have an insolinoma on my pancreas. This is really rare....so I'm very doudtful....but she also scares me into looking into it . She also wants me to have tests to determine if I have a tumor in my pituatary gland or hypothalmus.
So I feel irresponsible not going through with these tests. But I also hear everything you all have gone through...and it seems to suggest that this gluten stuff messes up a lot of your body and it simply needs time without the gluten to heal.
Even if she just said lets rule out the bad stuff and then we'll focus on healing you based on gluten being the culprit ....it would be easier for me to get on board.
Oh well, we have each other. We know this is real.
Thanks,
Cristi
Hi Cristi!
I know that some here did postpone tests in favor of trying the diet first. Karen (moremuscle) is one. I think her doc suspected some kind of pancreatic problem and recommended further evaluation, which, as far as I know, Karen never did. She is quite busy and not here as much as she used to be (plus she is well now on diet alone), but you might try emailing her to find out her experience.
Don't expect validation/support for the GF lifestyle from your doc, unfortunately. You wouldn't believe how many folks here who got completely well on the GF diet have had docs who still said it was ridiculous and to go back to eating gluten. Weird, huh?
Love,
Polly
I know that some here did postpone tests in favor of trying the diet first. Karen (moremuscle) is one. I think her doc suspected some kind of pancreatic problem and recommended further evaluation, which, as far as I know, Karen never did. She is quite busy and not here as much as she used to be (plus she is well now on diet alone), but you might try emailing her to find out her experience.
Don't expect validation/support for the GF lifestyle from your doc, unfortunately. You wouldn't believe how many folks here who got completely well on the GF diet have had docs who still said it was ridiculous and to go back to eating gluten. Weird, huh?
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly,
It is strange. I attended a celiac support meeting last week and they don't even seem to find doctors who understand their particular issues, and there's plenty of evidence that that disease is real.
Your observation that generalists are more open to work with a patient makes a lot of sense....if I can find such a doctor would be great.
I've seen a naturopath who seems a bit more open minded...but still is a little suspicious since her blood tests said I wasn't gluten intolerent. But she has the added burden that if she wants to treat me...she has to deal with specialists who have no respect for her.
Sorry this sounds like I'm dumping on all doctors...I know they are well intentioned and they deal with so many people that it must be difficult for them to determine who is loony and who is not...especially in the small amount of time you get during an appointment.
In the end , nobody is more motivated to figure this stuff out than the people who actually are sick with it. You guys have figured out a way to get healthy again and that pretty much says it all.
So I'll wait to see how my appointment goes on Tues. In any case I need to wrap my head around the fact that I probably won't get any validation from her. SO I'll just keep coming here for it.
I went on a little too long..sorry.
Thanks,
Cristi
It is strange. I attended a celiac support meeting last week and they don't even seem to find doctors who understand their particular issues, and there's plenty of evidence that that disease is real.
Your observation that generalists are more open to work with a patient makes a lot of sense....if I can find such a doctor would be great.
I've seen a naturopath who seems a bit more open minded...but still is a little suspicious since her blood tests said I wasn't gluten intolerent. But she has the added burden that if she wants to treat me...she has to deal with specialists who have no respect for her.
Sorry this sounds like I'm dumping on all doctors...I know they are well intentioned and they deal with so many people that it must be difficult for them to determine who is loony and who is not...especially in the small amount of time you get during an appointment.
In the end , nobody is more motivated to figure this stuff out than the people who actually are sick with it. You guys have figured out a way to get healthy again and that pretty much says it all.
So I'll wait to see how my appointment goes on Tues. In any case I need to wrap my head around the fact that I probably won't get any validation from her. SO I'll just keep coming here for it.
I went on a little too long..sorry.
Thanks,
Cristi