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I just went over my list of topics for my doctor's appointment, and my husband said... "Wow, she's really going to earn her fee today, huh? Hope she's up for it!" I hope so, too.
I have two main goals for today: to bring her up to speed on what's been going on with me, since my 'gluten crash' in March, including my Enterolab results; and to request her help in further assessing where I am now - should we check for other autoimmune markers? a complete thyroid panel? how about serum tryptase, urine histamine/prostaglandin D2, to check for mast-cell involvement? how about immunochemical fecal occult blood test, since I am reluctant to schedule a colonoscopy till I'm more healed, but of course would like to limit my cancer risk?
I am guessing that she will want to talk about my blood pressure (which had been elevated but has dropped back to low/normal), and my cholesterol. I will be very interested to see my Vitamin D levels (first time they'll have been checked).
My list is probably too long - I'm going to take one last pass through it, to organize it a little better and prioritize. I would very much like to manage my health with my primary care practitioner, since gluten sensitivity is a full-body matter. I am not averse to seeing a specialist at some point, but I think she and I can get a lot done together. I hope she feels the same way.
Wish me luck - and wish my doctor luck as well!
Love,
Sara
Doctor's appointment this afternoon (primary care)
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hopefully, she won't have the brain fog that so many GI docs seem to have, (
), that prevents them from clearly seeing the issues at hand, and you'll be able to cover the topics quickly and methodically. This thought just occurred to me - do you suppose that all of the GI docs who so vehemently deny the role that food-sensitivities play in the treatment of MC, might be sensitive to gluten and casein themselves, and they're simply addicted to it?
Good luck at the appointment.
Love,
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 possible, try to get your ANA level checked and Anti-Smooth Muscle (a.k.a. Anti-Actin) antibody for my little science experiment. It was suspected as a marker for celiac-related gut damage by Dr. Fasano.
A basic chem panel and CBC with liver enzymes would be worthwhile, especially since you're on such a "dangerous limited diet"
. Seriously, your doc will probably order them in fear that you are slowly killing yourself with your diet. 
And make sure they check your B-12 along with your Vit. D.
Good luck!!
A basic chem panel and CBC with liver enzymes would be worthwhile, especially since you're on such a "dangerous limited diet"
. Seriously, your doc will probably order them in fear that you are slowly killing yourself with your diet. And make sure they check your B-12 along with your Vit. D.Good luck!!
FWIW, my ANA was negative, when checked 2 years ago, but that was after I had been in remission for 5 years. I don't believe that it was ever checked back when I was reacting.
Tex
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.
LOL, Tex... I do believe that among 'civilians,' the ones who are most threatened by GF/Paleo diets are indeed the most addicted, and I wouldn't be surprised to find that true among docs, too. I'll assess my doctor's condition this afternoon ;)
Thanks, Z - I had forgotten about anti-actin. I did remember your ANA. I had the basic bloods drawn a couple of weeks ago, so will know CBC & D levels today - not sure whether she did liver enzymes, will check and ask for them, if not.
I hope she'll agree to check B-12 - I'm going to keep supplementing @2000mcg/day plus another 100mcg or so in the overall B complex, at least for now. Maybe that 'radical' dose will startle her into testing for it - I'm going to list my supplements and add it to my notes for the appointment. Thanks!
As we know, one can have 'elevated something going on' without elevated antibodies. I was struck by a link in a post of the past few days (Z, I think it was from you? I lost the thread that got me there)...
Leaving the merits of that sentence to the side for the moment, I found a non-US formulation of a Bismuth medication that's non-salicylate (Bismuth subcitrate), which I am curious about. I don't know whether I could get it from overseas, or have a compounding pharmacy prepare some... or whether that's even a good idea. I guess I'll let my doc know I've used Pepto in the past and am considering using it again - I'm pretty sure if I start talking about biofilms she'll refer me to some specialist, and I am not up to that chapter yet. (Chapter 1 = Enterolab results, I think.) I am curious about biofilms, though. More on that later...
Love,
Sara
Thanks, Z - I had forgotten about anti-actin. I did remember your ANA. I had the basic bloods drawn a couple of weeks ago, so will know CBC & D levels today - not sure whether she did liver enzymes, will check and ask for them, if not.
I hope she'll agree to check B-12 - I'm going to keep supplementing @2000mcg/day plus another 100mcg or so in the overall B complex, at least for now. Maybe that 'radical' dose will startle her into testing for it - I'm going to list my supplements and add it to my notes for the appointment. Thanks!
As we know, one can have 'elevated something going on' without elevated antibodies. I was struck by a link in a post of the past few days (Z, I think it was from you? I lost the thread that got me there)...
That Pepto Bismol works (helped in 100% of the cases with none of the placebo group benefitting) raises the question of the role of Biofilm infections, in collagenous colitis. Biofilm infections respond poorly to antibiotics but are very sensitive to the Bismuth found in Pepto Bismol.
Leaving the merits of that sentence to the side for the moment, I found a non-US formulation of a Bismuth medication that's non-salicylate (Bismuth subcitrate), which I am curious about. I don't know whether I could get it from overseas, or have a compounding pharmacy prepare some... or whether that's even a good idea. I guess I'll let my doc know I've used Pepto in the past and am considering using it again - I'm pretty sure if I start talking about biofilms she'll refer me to some specialist, and I am not up to that chapter yet. (Chapter 1 = Enterolab results, I think.) I am curious about biofilms, though. More on that later...
Love,
Sara
p.s. That bismuth subcitrate formulation is the same one Harma was offered, in colloidal form, when she sought Pepto Bismol at the pharmacy in Amman. Which is interesting (and apparently it wouldn't be helpful for D, but right now my interest is in its ability to disrupt the evil colonies I posit are inhabiting my system, and hopefully make it possible for a better gut flora to establish... more on all that later, too!).
L,
S
L,
S
My doctor visit was OK - not everything I'd hoped for, but a good start.
Her agenda, of course, was statins - my total cholesterol was 245. I reminded her that my father died of a statin drug, and said I won't take them now (actually ever, but I can just keep saying "not now" indefinitely). I'd be interested in that new NMR lipid-profile test... which I believe she isn't up on. She did order the VAP test, which I think will give some indication of the size of the LDL particles - and a better sense of my real risk, which I'm not too worried about. My HDL was 87, which is excellent (if it means anything at all).
I had two very slightly elevated things in blood - CO2 and Albumin - both barely above the reference range.
My Vitamin D was 49ng/mL - I think that's pretty good... though it's hard to know whether I should continue at my current levels, since I don't know what the level was when I was most symptomatic.
Her agenda, of course, was statins - my total cholesterol was 245. I reminded her that my father died of a statin drug, and said I won't take them now (actually ever, but I can just keep saying "not now" indefinitely). I'd be interested in that new NMR lipid-profile test... which I believe she isn't up on. She did order the VAP test, which I think will give some indication of the size of the LDL particles - and a better sense of my real risk, which I'm not too worried about. My HDL was 87, which is excellent (if it means anything at all).
I had two very slightly elevated things in blood - CO2 and Albumin - both barely above the reference range.
My Vitamin D was 49ng/mL - I think that's pretty good... though it's hard to know whether I should continue at my current levels, since I don't know what the level was when I was most symptomatic.
My doctor visit was OK - not everything I'd hoped for, but a good start.
Her agenda, of course, was statins - my total cholesterol was 245. I reminded her that my father died of a statin drug, and said I won't take them now (or ever, but I can just keep saying "not now" indefinitely). I'd be interested in that new NMR lipid-profile test... which she wasn't aware of. She did order the VAP test, which I think will give some indication of the size of the LDL particles - and a better sense of my real risk, which I'm not too worried about. My HDL was 87, which is excellent (if it means anything at all). My triglycerides/HDL ratio is awesome - if that's a valid measure
That's something I calculated, not something they report, but it is heartening anyway. (Thank you blogosphere - http://livinlavidalocarb.blogspot.com/2 ... cerns.html)
I had two very slightly elevated things in blood - CO2 and Albumin - both barely above the reference range (she didn't even mention them).
My Vitamin D was 49ng/mL - I think that's pretty good... though it's hard to know whether I should continue at my current levels, since I don't know what the level was when I was most symptomatic. I am taking 6000IU/day, and maybe as I continue healing, I will need lower amounts to maintain? Wish I had a pre-MC-crash baseline.
She said the (slowly disappearing) lump on my ankle was probably a ganglion cyst (and I believe it's disappearing because my overall inflammation is gradually receding - I realize such cysts can come and go generally, but mine was large and painful, and is now small and non-bothersome).
I told her my current B-12 supplementation levels - she was surprised, but also nodded at my assessment that the hand-numbness was peripheral neuropathy. Her idea is to test my B-12 levels "next time." I may call and see if I can add that check-mark before I do this next blood draw.
My TSH is normal - and in the absence of thyroid symptoms, I'm leaving the thyroid topic for "another next time."
Going to have a DEXA scan (overdue!). My last bone density test was normal - a friend my age has broken two bones in the last month, so I am hoping I'm not heading that way.
My doc accepted my Enterolab results without question - they are part of my record now. So my PCP has me in her sights as gluten sensitive, probably celiac. I think that's partly because she wasn't fully paying attention; that is OK, because I *am* paying attention. I told her that I am eating virtually no grains - she asked me what I DO eat, and I said, meat, fish, vegetables, fruit... and you could almost see her brain-fog clear for a moment (right, food!). She said I could eat non-gluten grains, and I told her that oats most certainly do not agree with me, but I seem to tolerate occasional small amounts of rice and corn. (She said, "you can eat rice!" - and I said, yes, but I don't.)
At the end of the visit, she exhorted me to be careful about the diet, which she said "can be hard." I assured her that the symptoms are a lot harder than the diet. She can't imagine how I actually eat, I am sure - I couldn't have imagined it myself, some months back.
I have a whole list of topics unaddressed - so I will see her again, in a couple of months. I like her, I wish she were less distracted and by-the-book, I appreciate her backing *right* off on the statins... we shall see. My husband thinks I need a "paleo doctor" - I think maybe he should find himself a doctor and then tell me how that goes. I have my monthly 'husband-doctor-nagging' automated in the Google calendar now... eventually, I'm sure he will succumb. Here's hoping he doesn't have a cascade of symptoms forcing his hand (which is what happened the last time he went to a doctor's office).
Thanks for helping me organize my thoughts on this - Z, I hope we'll get to those AI topics next time. And more...
Love,
Sara
Her agenda, of course, was statins - my total cholesterol was 245. I reminded her that my father died of a statin drug, and said I won't take them now (or ever, but I can just keep saying "not now" indefinitely). I'd be interested in that new NMR lipid-profile test... which she wasn't aware of. She did order the VAP test, which I think will give some indication of the size of the LDL particles - and a better sense of my real risk, which I'm not too worried about. My HDL was 87, which is excellent (if it means anything at all). My triglycerides/HDL ratio is awesome - if that's a valid measure
That's something I calculated, not something they report, but it is heartening anyway. (Thank you blogosphere - http://livinlavidalocarb.blogspot.com/2 ... cerns.html)I had two very slightly elevated things in blood - CO2 and Albumin - both barely above the reference range (she didn't even mention them).
My Vitamin D was 49ng/mL - I think that's pretty good... though it's hard to know whether I should continue at my current levels, since I don't know what the level was when I was most symptomatic. I am taking 6000IU/day, and maybe as I continue healing, I will need lower amounts to maintain? Wish I had a pre-MC-crash baseline.
She said the (slowly disappearing) lump on my ankle was probably a ganglion cyst (and I believe it's disappearing because my overall inflammation is gradually receding - I realize such cysts can come and go generally, but mine was large and painful, and is now small and non-bothersome).
I told her my current B-12 supplementation levels - she was surprised, but also nodded at my assessment that the hand-numbness was peripheral neuropathy. Her idea is to test my B-12 levels "next time." I may call and see if I can add that check-mark before I do this next blood draw.
My TSH is normal - and in the absence of thyroid symptoms, I'm leaving the thyroid topic for "another next time."
Going to have a DEXA scan (overdue!). My last bone density test was normal - a friend my age has broken two bones in the last month, so I am hoping I'm not heading that way.
My doc accepted my Enterolab results without question - they are part of my record now. So my PCP has me in her sights as gluten sensitive, probably celiac. I think that's partly because she wasn't fully paying attention; that is OK, because I *am* paying attention. I told her that I am eating virtually no grains - she asked me what I DO eat, and I said, meat, fish, vegetables, fruit... and you could almost see her brain-fog clear for a moment (right, food!). She said I could eat non-gluten grains, and I told her that oats most certainly do not agree with me, but I seem to tolerate occasional small amounts of rice and corn. (She said, "you can eat rice!" - and I said, yes, but I don't.)
At the end of the visit, she exhorted me to be careful about the diet, which she said "can be hard." I assured her that the symptoms are a lot harder than the diet. She can't imagine how I actually eat, I am sure - I couldn't have imagined it myself, some months back.
I have a whole list of topics unaddressed - so I will see her again, in a couple of months. I like her, I wish she were less distracted and by-the-book, I appreciate her backing *right* off on the statins... we shall see. My husband thinks I need a "paleo doctor" - I think maybe he should find himself a doctor and then tell me how that goes. I have my monthly 'husband-doctor-nagging' automated in the Google calendar now... eventually, I'm sure he will succumb. Here's hoping he doesn't have a cascade of symptoms forcing his hand (which is what happened the last time he went to a doctor's office).
Thanks for helping me organize my thoughts on this - Z, I hope we'll get to those AI topics next time. And more...
Love,
Sara
Sara, I'm so glad your appointment went well, even if your doctor can't fathom life without grains.
Your postings here teach me a lot. I still find some of the terms to be familiar but still foreign. I will make more time to track stuff as fall comes upon us.
Congratulations on a successful appointment.
Love, Sharaine
Your postings here teach me a lot. I still find some of the terms to be familiar but still foreign. I will make more time to track stuff as fall comes upon us.
Congratulations on a successful appointment.
Love, Sharaine
Wow Sara, I envy your high HDLs being 87. I just had a lipid profile and got the results last week, and mine wasn't so good. My total chol was 227, but my HDL was 67. My LDL was the worse it's ever been at 143, which he was concerned about, so he wanted me to take a statin for the first time in my life. He put me on a low dose of simvastatin 10mg qd, however, I told him I would consider only 5mg., and also I wanted to be off my daily baby aspirin. He agreed. So, I started my 5mg and I'm off the aspirin. I'm hoping the low dose statin won't hurt, but I'll probably know soon enough.
Your doctor sounds like a good one to order the test for LDL size. Mine didn't offer, and I wish he had.
I think you're in great shape with your Vit D level plus your chol profile. Whatever you're doing is right on.
garina
Your doctor sounds like a good one to order the test for LDL size. Mine didn't offer, and I wish he had.
I think you're in great shape with your Vit D level plus your chol profile. Whatever you're doing is right on.
garina
Thanks, Z - I wish I had a previous D level, so I could know for sure whether it's OK to back off. But in any case, the amount I am taking is not malabsorbed. I am sure I can drop the amount next summer, when my gut is presumably more healed.
I heard a podcast recently that mentioned how when there is elevated inflammation in the body, the full advantage of sun-based Vitamin D is not properly made (http://www.thelivinlowcarbshow.com/show ... lammation/ - not bad in other ways, the fellow I was interested in was after about the 1st half hour).
I think overall, it's good news. I wish I had gotten my next round of tests was organized according to my ideas, and yours - maybe next time!
L,
S
I heard a podcast recently that mentioned how when there is elevated inflammation in the body, the full advantage of sun-based Vitamin D is not properly made (http://www.thelivinlowcarbshow.com/show ... lammation/ - not bad in other ways, the fellow I was interested in was after about the 1st half hour).
I think overall, it's good news. I wish I had gotten my next round of tests was organized according to my ideas, and yours - maybe next time!
L,
S
Interesting summary, Sara. Thanks for sharing. Your doc sounds far more "workable" than most, even if not ideal.
A few comments........I have also always run a cholesterol in the 200s, an LDL in the lower 100s and an excellent HDL. FWIW, I think the high HDL is protective and thus I have never considered taking anything. (BTW, I try to do daily exercise, which I think helps improve cardio status without meds).
Great vitamin D level! I think Dr. Cannell recommends a minimum of 40 ng/dl. However, even higher amounts may be more protective in some cases. How long have you been taking vitamin D now? You may not have to back down much, if it's true that the body uses roughly 5000 IUs per day.
You live in an area that does not get adequate sun for much of the year. Plus cold/flu season is upon us! Something to keep in mind......vitamin A interferes with vitamin D absorption. But only the form of vitamin A that is found in supplements (retinol), not the vitamin A that you get from natural foods (beta carotene). It's probably not a good idea to take a supplement with more than 5000 IUs of vitamin A. Here's an "aside" I have wondered about - is the vitamin A (retinol) in the retin A skin cream (tretinoin) that some women use on their face to reduce wrinkles absorbed through the skin in high enough amounts to interfere with vitamin D absorption? I can't seem to find this info.
Love,
Polly
A few comments........I have also always run a cholesterol in the 200s, an LDL in the lower 100s and an excellent HDL. FWIW, I think the high HDL is protective and thus I have never considered taking anything. (BTW, I try to do daily exercise, which I think helps improve cardio status without meds).
Great vitamin D level! I think Dr. Cannell recommends a minimum of 40 ng/dl. However, even higher amounts may be more protective in some cases. How long have you been taking vitamin D now? You may not have to back down much, if it's true that the body uses roughly 5000 IUs per day.
You live in an area that does not get adequate sun for much of the year. Plus cold/flu season is upon us! Something to keep in mind......vitamin A interferes with vitamin D absorption. But only the form of vitamin A that is found in supplements (retinol), not the vitamin A that you get from natural foods (beta carotene). It's probably not a good idea to take a supplement with more than 5000 IUs of vitamin A. Here's an "aside" I have wondered about - is the vitamin A (retinol) in the retin A skin cream (tretinoin) that some women use on their face to reduce wrinkles absorbed through the skin in high enough amounts to interfere with vitamin D absorption? I can't seem to find this info.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Sara,
At least your doctor was willing to listen, especially about enterolab. Sounds like she's a keeper.
A low albumin is associated with acute or chronic illness and inflammation. A high result could simply mean a little dehydration. I wouldn't give that value a second thought - most likely it means you are doing a great job of keeping inflammation low.
Good job on the HDL and vitamin D. My cholesterol is always in the low 200s but I have good HDL (not as good as yours though). I would never consider taking a statin either.
Mary Beth
At least your doctor was willing to listen, especially about enterolab. Sounds like she's a keeper.
A low albumin is associated with acute or chronic illness and inflammation. A high result could simply mean a little dehydration. I wouldn't give that value a second thought - most likely it means you are doing a great job of keeping inflammation low.
Good job on the HDL and vitamin D. My cholesterol is always in the low 200s but I have good HDL (not as good as yours though). I would never consider taking a statin either.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Thanks, Sharaine, for your well-wishes, and Garina - sorry to hear about the simvastatin. I agree with Dr. Polly that HDL is protective - thanks Polly, for your sweet note and your Vitamin D thoughts. I have been taking Vitamin D for some time - I upped the amount once I got my symptoms under control, back in March.
Garina and others curious about cholesterol and ratios - here's a useful calculator: http://www.hughchou.org/calc/chol.php - Garina, according to this your Total cholesterol and LDL numbers mean 'borderline' risk, and all your ratios are "ideal"! If you don't care for the way you feel on statins, I think you can push back a little harder at your next appointment. The calculator has helpful links for the science behind his formulas, and I may print one of those for my next doctor visit.
My ratios are terrific, partly because my triglycerides are so low.
Mary Beth, thanks for the reassurance about the slightly high albumin - it makes sense that I'd be a little dehydrated, first thing in the morning, at a fasting blood test. I'm not sure my doctor really grasped that the Enterolab results were in any way novel to her experience. It occurred to me later that the reason she has not pushed me to see a GI doc might be because she assumes I have already done so. She did urge me to get a colonoscopy, and I said I want to wait till I'm more healed, but would be interested in the immunochemical fecal occult blood test. She thinks the CC might cause that to give a false-positive result (and I believe this means she is not familiar with the particular test I read about, so I need to study up on that for my next visit).
Polly, and all other health-interested folks, I really need to get back into moving more on a regular basis. It certainly improves quality of life and energy!
Love,
Sara
Garina and others curious about cholesterol and ratios - here's a useful calculator: http://www.hughchou.org/calc/chol.php - Garina, according to this your Total cholesterol and LDL numbers mean 'borderline' risk, and all your ratios are "ideal"! If you don't care for the way you feel on statins, I think you can push back a little harder at your next appointment. The calculator has helpful links for the science behind his formulas, and I may print one of those for my next doctor visit.
My ratios are terrific, partly because my triglycerides are so low.
Mary Beth, thanks for the reassurance about the slightly high albumin - it makes sense that I'd be a little dehydrated, first thing in the morning, at a fasting blood test. I'm not sure my doctor really grasped that the Enterolab results were in any way novel to her experience. It occurred to me later that the reason she has not pushed me to see a GI doc might be because she assumes I have already done so. She did urge me to get a colonoscopy, and I said I want to wait till I'm more healed, but would be interested in the immunochemical fecal occult blood test. She thinks the CC might cause that to give a false-positive result (and I believe this means she is not familiar with the particular test I read about, so I need to study up on that for my next visit).
Polly, and all other health-interested folks, I really need to get back into moving more on a regular basis. It certainly improves quality of life and energy!
Love,
Sara