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What is your blood type?
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What is your blood type?
O+
33%
 33%  [ 47 ]
O-
8%
 8%  [ 12 ]
A+
24%
 24%  [ 34 ]
A-
5%
 5%  [ 8 ]
B+
10%
 10%  [ 15 ]
B-
4%
 4%  [ 6 ]
AB+
6%
 6%  [ 9 ]
AB-
1%
 1%  [ 2 ]
I don't know
4%
 4%  [ 6 ]
Total Votes : 139

Author Message
TooManyHats
Rockhopper Penguin
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Joined: 14 Jan 2011

Posts: 550
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2017 Nov 18 - 9:36 AM


Food Intolerances : Gluten Soy Dairy Spices including cinnamon, cloves, and ginger
Location: New Jersey

PostPosted: Mon Feb 21, 2011 4:18 pm    Post subject: Reply with quote

AB+
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Progress, not perfection. devilangel
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humbird753
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Joined: 28 Nov 2011

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2017 Nov 18 - 7:36 AM


Food Intolerances : Gluten, Casein
Location: Wisconsin

PostPosted: Sun Sep 09, 2012 10:03 am    Post subject: Reply with quote

I am B+ and have LC

Paula
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"You'll never know how strong you are until being strong is the only choice you have."

"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
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Christine.
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Joined: 20 Feb 2012

Posts: 260
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2017 Nov 18 - 5:36 AM


Food Intolerances : Gluten, casein, soy, eggs & ?

PostPosted: Sun Sep 09, 2012 6:11 pm    Post subject: Reply with quote

B- here.
Christine
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guitarlover

United States

Joined: 26 Jan 2013

Posts: 11
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2017 Nov 18 - 8:36 AM


Food Intolerances : tested allergic to 66 different foods 40 years ago

PostPosted: Tue Jan 29, 2013 2:39 am    Post subject: Reply with quote

tex wrote:
...that autoimmune diseases may be theoretically transmissible by blood transfusions to an already immunocompromised person, but not an individual with a normal immune system.


Hi Tex,

I'm new here and appreciate so much this forum and your contributions. I'm just beginning to get going with all this forum has to offer to people looking for support with bowel disease issues. I'd like to say hello and thanks for being here.

My comments on your post are just some memories that are tangential but cluster around thoughts of blood work and blood types. I've a ton of memories; I'm elderly and there are many issues in connection to my health history that I've struggled to try to figure out as my health has declined year after year. Some of these things are just beginning to add up to some degree now, thanks especially to you and this group.

A little more about me and some stories...

I saw a rheumatologist last year and he had the usual ton of paperwork to fill out to get started with him. When I first saw him, he remarked that my paperwork had more problem areas checked off than any patient he'd had before. He was bound to be able to tell just by glancing at me that I wasn't making that poor health stuff up, though. For reasons no doctor has ever diagnosed, I've lost most of my hair, and there are skin issues that psoriasis alone can't explain, unsightly oddly patterned inflammation issues that make me wear long skirts if not long pants when I go out. (That's an unusual event, as I'm crippled with arthritis and have to use a rollator to get around. And then there is that chronic bowel issue that does things like interrupt a visit with my ophthalmologist, so that he is helping me get into the female patient's bathroom as speedily as possible, but I don't make it and leave a mess for miles on the bathroom floor. I need to see him again and I'm embarrassed just sitting here thinking about going back...)

Anyway, one of the questions on the rheumatologist's paperwork asked whether I'd ever had a blood transfusion. Yes, indeed, I have had. And I'm thinking that maybe that transfusion was an unlucky event in my life. I don't think it was absolutely pivotal, as my mother clearly had many of the same problems I have (except that for her many of them were to a milder degree). What I'm thinking is that it might have speeded up the calendar on the deterioration of my health--that those things would likely have gotten a start in genetics and happened to me eventually anyway, if I were an unusually long-lived person. (...which I won't be, thanks to the serious health problems that have mounted up along the way. Cancer runs in my family, but at least I don't have that one, as far as I know now. I'm thankful for that.)

About the blood transfusions that apparently the rheumatologist must think his patients are more likely than most to have had (I haven't seen that question ever asked previously)... The transfusion was given when I was eight years old. I've heard it commented that a transfusion ought always to be done in a hospital. I've wondered why, and what might have gone differently in a hospital. This was the year 1951 and maybe they hadn't yet discovered the need for a hospital to get involved? The transfusion was given because I'd been given iron shots year after year by my pediatrician, in trying to fix my anemia. The shots didn't help enough, though. He wanted to fix me up better before we moved away to live down in the country and I'd not see him again. I guess he might have been worried about the quality of care of the country doc I was going to get? He also seemed to take a personal interest in me. He was a very nice person and took me around through his mansion (the office was at one end with a portico) to meet his wife and mother, ladies whose daily dress with pearls and earrings and beautiful clothes made quite an impression on my young eyes. Anyway, I think he was a good and a very well-meaning doctor.

Somewhere along the line he took my blood type and secured a pint (?) of the right stuff to use. And when the appointed day came around, the blood transfusion seemed to be going just fine, as far as anything I felt. But after a very short absence after starting the transfusion, he walked back into the room, quickly glanced at me and disconnected the blood line. "Rash" he said. He had no backup blood there.

I expect that, given that I still felt fine, I could have gone home in that condition okay and remained okay. But this was to be my last visit with him, his last chance to help me get past the anemia. Apparently his own blood type matched mine, and that was his backup plan. In the next room, he strapped down his own arm and managed to take his own blood. (I didn't hear a nurse involved--he didn't have a nurse, unless the lady at the reception desk could do double duty. But I was there a zillion times and I never saw her get up from the desk at all.) He gave me a pint of his own blood that day, and there was no new rash showing up after the second round of blood. I never saw him again.

About a year and a half later, my mother found out that my old pediatrician had died. Of leukemia.

My new country (family) doctor came to see me at home when I was sick, the same as my old pediatrician had done. (Oh, those were the days!) He seemed fine as a doctor too, though he didn't check me for anemia or anything else--just visited when I was sick, and always did the same thing: administer an antibiotic shot. He carried the shots around in his travel bag. According to what I can look up now, antibiotics had been discovered before I was born, but for whatever reason, my earlier pediatrician had steered clear of using them with me. Anyway, the country doc gave me bunches of antibiotic shots, every year, every time I got sickness of any kind, no lab work involved. Sometimes the shot helped, and sometimes it didn't. If you are elderly, maybe you remember this happening to you too?

One last note, an aside that might be of interest in case many of you have your own reasons to think about blood transfusions and its potential for affecting your health issues now. My blood type is A positive. That's assuming that a Ob-Gyn practice knew what it was doing in relying on a major hospital here to furnish blood type information on the patients for its practice. I assume that it's absolutely correct that I'm type A positive.

But go back to my college years... something was different there about my blood, or at least it was unusual, and I have no way of finding out what it was. I wish I knew.

At the time, I was taking a course in advanced human physiology. A part of that was a pretty intensive and a very interesting lab course requirement. In one session we all took our blood types, using the materials provided by the professor. My blood type there turned out unmistakeably to be Type A Negative. I knew enough to be disappointed in that type; I wanted to be able to have a family someday without potentially having my baby die (something that had happened to a physical education teacher with A negative blood in my high school). The two lab instructors pulled me aside after class and both insisted that I ought to take this result with a grain of salt. Neither of them respected the professor himself, and they both said that his stuff wasn't reliably stored or categorized. A mess, they said. But no other student in the lab of something like 30-36 students had this result that I'd had, and they were using the very same materials that I was using. At least one student came out A positive, but I didn't. So what was this anomaly that I did have regarding my blood? I haven't a clue, nor did the lab instructors, since they didn't know what the "wrong" material might have been.

I just think now that perhaps that unusual result might have been a bad sign, perhaps a sign that in fewer than 10 years later I'd be so overwhelmed with allergy problems that I went in for the considerable expense of having food testing, the type that used inspections through a microscope at each drop of blood with a different drop of food essence (whatever that's called). It cost a fortune, not all of it covered by insurance. And I wound up with a result of 66 foods that I was allergic to at that time (maybe I acquired more later?).... Not particularly helpful information, because I couldn't practically avoid all those foods. My allergist had the second lab in the country to use that kind of blood work for food testing and regularly they were training other labs in how to do the work. I do think they knew what they were doing, and I do think I have severe food allergies as well as severe inhalant allergies. The inhalant testing they did was of the skin scratch kind, and it turned out that I was allergic to every inhalant they tested for--with all the bright red swelling reactions that I could clearly see too.

I happen to recall when my inhalant allergy problems started up, big time. It was shortly after the blood transfusion. I wasn't carrying around a tissue with me all the time prior to that. But it was very noticeable, enough so that even my cousin noticed it the next time he saw me and he thought it was odd... but my dresses didn't tend to have a pocket and I couldn't contemplate not having tissues at the ready to blow my nose at that point in life. I carried tissues with me wherever I walked at that point soon after the blood transfusion.

Allergies have had a strong impact on my health. I don't know how allergies get started for most people, but at this late point in life, I'm thinking that many of my health problems probably originated with the kind of gut I inherited and the particular foods that got put into it, foods that didn't work in the expected fashion as they did for most people. And that what happened with my blood transfusion perhaps provoked a stronger immune response later to all sorts of things than what I ordinarily might have suffered. When something so basic as an immune response doesn't work right, and the blood circulating throughout the body spreads the misery, then all sorts of health problems could theoretically be made worse. That's where I am today: I have lots of serious issues. It's hard to jump in and get rid of them, though, because so often what's considered a best treatment for one kind of health problem is considered a worst treatment for another kind of problem in one or more ways.

I have had some pretty bad luck in trusting doctors to do the best thing for me over the years, especially in the last fifteen or so years. I don't say they haven't all meant well, but no doctor has enough time in the way medicine has to be practiced nowadays to give the kind of thought and detective work to figure out how to truly help someone with so many serious and complicated problems as what I have. Doctors nowadays are trained to think *pharmaceuticals!*, first and foremost. This approach doesn't work well with a patient who tends to react to things, but most people aren't in that category. Hence most medicine today is practiced using a statistical formula for average patients; anything else takes too long with too much individual detective work than the doctor today has enough time for and perhaps lacks the research training for.

What I have ended up with my physicians are standard bromides from different specialists who simply use the ideas that work for many of their patients--often those lucky enough to have just a single health issue, without any allergies. One of my doctors, one that I really do like, has also made some very serious mistakes with my care. I can't undo that, and getting mad won't help either.

Anyway, I'm no longer a youngster, but I still (sometimes) have my wits about me, and I'm still actively trying to figure out how to help myself. At this point, I'm the person I trust the most to make my own health care decisions.

I'm headed toward Paleo; I just ordered "The Primal Blueprint" by Mark Sisson last night. At a minimum, I will at least avoid many of the foods I was once tested allergic to. But a high protein diet is considerably less than ideal with kidney disease, wouldn't you know?

I'm at least not into total renal failure yet, and my kidney specialist thinks I can still eat a reasonable amount of protein with no great harm. (Protein is something I'd been going light on because I've read a book by a kidney doctor/researcher suggesting that with kidney disease a diet wildly short on protein of all kinds will help to avoid dialysis--you know, like eating just grains, potatoes, greens and the like.)

I didn't mean to write quite so much, especially for a first post. I'll try to shorten my long-windedness in future comments! Thanks again for all that you do here.
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Best wishes, Mary
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tex
Site Admin
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Joined: 24 May 2005

Posts: 30706
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2017 Nov 18 - 7:36 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Tue Jan 29, 2013 11:28 am    Post subject: Reply with quote

Hi Mary,

Welcome to our internet family. Needless to say, you have a very interesting history of health issues. While some of your experiences have been quite unique, many of us can identify with other parts of your history, especially the part about bathroom "accidents" and problems with doctors who are either not at all helpful, or who even cause iatrogenic damage to our health.

Given your long history of allergens and food sensitivities, it's extremely likely that you are gluten-sensitive, and if you are, then it is typically a stepping stone for the development of other sensitivities and other autoimmune diseases. I wonder if any of your doctors ever even tested you for celiac disease. Of course, unless you have one of the two common celiac genes, the blood tests they use are not sensitive to detect non-celiac gluten sensitivity anyway, so that would place you in the same situation as most of us here — at least as sensitive to gluten as the average celiac, but unable to get a celiac diagnosis because the mainstream medical community has never developed a test that can accurately detect it. The only tests that will reliably detect the type of food sensitivities that we have are stool tests offered by EnteroLab, in Dallas, TX, and most GI docs are so far behind times with their training that they don't even recognize the value of those stool tests.

Mary wrote:
I have had some pretty bad luck in trusting doctors to do the best thing for me over the years, especially in the last fifteen or so years. I don't say they haven't all meant well, but no doctor has enough time in the way medicine has to be practiced nowadays to give the kind of thought and detective work to figure out how to truly help someone with so many serious and complicated problems as what I have. Doctors nowadays are trained to think *pharmaceuticals!*, first and foremost. This approach doesn't work well with a patient who tends to react to things, but most people aren't in that category. Hence most medicine today is practiced using a statistical formula for average patients; anything else takes too long with too much individual detective work than the doctor today has enough time for and perhaps lacks the research training for.


You obviously think along the same lines as many/most of us here, and you've summed up the problem quite well, IMO. Most (though certainly not all, thank goodness) specialists today are too busy to waste their valuable time listening to patients (at least that is the impression that they give), so instead of addressing the needs of their patients, they simply dispense scripts for drugs, even in cases where other treatments (such as diet changes, for example) would be a more effective (and certainly safer) treatment. Why? Because writing out a prescription is fast and easy, whereas describing to a patient all the details of how to use diet changes to treat their problems requires much more time than they feel that they can allot to any given patient. Figuring out a custom-tailored diet for a patient, and then fine-tuning it as time goes on, takes a heck of a lot of time and effort, so for the doctor, choosing a prescription for a drug is a no-brainer.

It just so happens that I'm writing a book about this topic, because it seems to be becoming more and more of an issue these days, and I think it's time to step back and take a good, hard look at the way medicine is being practiced these days. IMO, doctors are painting themselves into a corner, and they're forcing their patients to seek other ways to manage their health care.

As you mentioned, the CKD may be a problem, because protein is vital for helping to heal our intestines when they have been damaged by gluten sensitivity and other food sensitivities. What stage of CKD are you in? If it's 4, you will obviously have to be very careful about your food selections on the paleo diet, and that problem is complicated by the fact that digestive system diseases are typically aggravated by fiber in the diet, so most of us have to severely limit our fiber intake while we are recovering.

Incidentally, your description of your iron issue almost surely indicates pernicious anemia, especially since it occurred at such a young age. Did you ever receive a proper diagnosis, and is it being properly treated? If you have pernicious anemia then you are also severely deficient in B-12, because pernicious anemia is caused by the inability to produce sufficient intrinsic factor in the stomach, and intrinsic factor is necessary for the absorption of vitamin B-12. If that is your situation, you should be receiving regular B-12 injections, or using a sublingual B-12 lozenge designed to dissolve under the tongue, where it can be absorbed directly into the bloodstream. Lack of proper treatment can cause all sorts of adverse symptoms, including hair loss, and generally declining health, for example.

Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)
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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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guitarlover

United States

Joined: 26 Jan 2013

Posts: 11
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2017 Nov 18 - 8:36 AM


Food Intolerances : tested allergic to 66 different foods 40 years ago

PostPosted: Sat Feb 02, 2013 6:13 am    Post subject: Reply with quote

tex wrote:
Welcome to our internet family.


Thank you! I'm so glad to be here. To put it mildly...

I am trying now to recover from a really bad problem. When I was younger and healthier overall, I didn't get totally wiped out for so long after a diarrhea bout. It has been more than 24 hours now and I'm still shaky weak. Probably mainly a function of the intense sweating, I suppose. (I'm habitually dehydrated to start with.)

I basically had nothing to eat on the day of the event until supper, when I had a medium portion of lamb and nothing else. Lamb was one thing I tested no allergies for way back when. I may have acquired an allergy/sensitivity to lamb? Either that's a new allergy, or my digestive system is so inflamed now that the mechanical irritation caused by the food mass itself will cause a severe reaction.

tex wrote:
Given your long history of allergens and food sensitivities, it's extremely likely that you are gluten-sensitive, and if you are, then it is typically a stepping stone for the development of other sensitivities and other autoimmune diseases.


A few years back, I read a book by Shari Lieberman (The Gluten Connection) and wondered about that. I ought to get it out again and review that book, but anyway I remember thinking there was a pretty good probability there. I did try to go gluten-free at the time but didn't stick to it well enough. I decided last fall to head back toward gluten-free again.

tex wrote:
I wonder if any of your doctors ever even tested you for celiac disease.


No, my doctor is overwhelmed with the numbers of things to have to think about with me; he's not going to tell me about other possibilities that will potentially give him something else to take up time in my too-lengthy visits. But I don't really need the testing. I'm just going to assume I need to go gluten-free. I don't know what else, except probably dairy free too (way too much mucous congestion everywhere here generally) and I anyway, I know I've been tested allergic to all the dairy foods the allergist tested for. Oh, and low oxalate, which definitely means no beans and some other things, like no spinach (that I love).

tex wrote:
Of course, unless you have one of the two common celiac genes, the blood tests they use are not sensitive to detect non-celiac gluten sensitivity anyway...


For the most part, I no longer worry about official diagnosis anyway. It's too much trouble. I'm in bad enough shape that it wears me out to make a trip to see a doctor, so I don't do it any more frequently than I absolutely have to. Even with an official diagnosis, I don't think I can rely on appropriate careful regard to the implications of the diagnosis, at least with respect to pharmaceuticals and my various serious problems. I have figured out in my old age that I'd just better keep figuring things out here for myself. (If I were 30 years younger and I'd read that statement from an old lady, my thoughts would have been: "Addled!" But no, mainly experienced, and too old to bother with refraining from saying what I think about my own health care.)

tex wrote:
Mary wrote:
"...Hence most medicine today is practiced using a statistical formula for average patients; anything else takes too long with too much individual detective work than the doctor today has enough time for and perhaps lacks the research training for."


It just so happens that I'm writing a book about this topic...


Wayne, this is exciting. Literally. I kept thinking about it, and thinking about it, and thinking about it as I was doing my B12 sublingual shopping thing at Amazon. I'm still not finished with being excited and thinking about your plans. Bravo! Be sure the print isn't too small, and I'll be the first one to buy your book.

I've gone so far with your idea as to imagine a jacket cover blurb by Carolyn Dean, MD, ND. She has had some comments of her own regarding medical training. She's going to agree with your assessments.

At this point, I'm editing out a ton of comments now, because your announcement excited me--it's so obviously a much-needed book!--so much so that I've written far too much in response. (I just cut and copied those comments into a different file.) But a couple of items for now:

A pertinent story appears in the New York Times (Feb.1) online. The title is "The Boy With a Thorn in His Joints" by Susanna Meadows. Here is the link to page 1 of a 6-page story that winds up at Leaky Gut Syndrome from the direction that so many people end up coming from (i.e., nothing working from the usual medical sources):

http://www.nytimes.com/2013/02/03/magazine/the-...-joints.html?_r=0

In case the effects of large/huge practices on the quality of health care comes up in your book, maybe just one more link now, from the Charlotte Observer on January 28 of this year. "Judge clears Charlotte allergy doctor to practice on her own; clinic will appeal"

http://www.charlotteobserver.com/2013/01/28/381...otte-allergy.html

After the dust settles, a first-hand story in quotes from this particular doctor, if you could get one, might be an interesting read and at the same time illustrate another problem for patients--group practices whose large-practice management necessities manage to override good medical care. I'm a patient in a (different) group medical practice that is far, far too-large too and have seen my own unfortunate results with it.

tex wrote:
As you mentioned, the CKD may be a problem, because protein is vital for helping to heal our intestines when they have been damaged by gluten sensitivity and other food sensitivities.


Oh, dear, I didn't know that.

tex wrote:
What stage of CKD are you in? If it's 4, you will obviously have to be very careful about your food selections on the paleo diet, and that problem is complicated by the fact that digestive system diseases are typically aggravated by fiber in the diet, so most of us have to severely limit our fiber intake while we are recovering.


When last tested, it was 3b, but getting down close to a GFR category line. My GFR was 33.

I had no idea about the fiber problem. Thank you again....

tex wrote:
Incidentally, your description of your iron issue almost surely indicates pernicious anemia, especially since it occurred at such a young age. Did you ever receive a proper diagnosis, and is it being properly treated?


I never heard the word "pernicious" used by the doctor when I was there as a youngster, but he might have used it on the phone with my mother at some point. I just kept hearing that I was still low on iron during office visits.

tex wrote:
If you have pernicious anemia then you are also severely deficient in B-12, because pernicious anemia is caused by the inability to produce sufficient intrinsic factor in the stomach, and intrinsic factor is necessary for the absorption of vitamin B-12.


I don't know about the pernicious part of it, but the lack of B-12 is definitely true. Thanks to you, and not to anyone on my healthcare team, I know that now. (THANK YOU, WAYNE!)

I went to Amazon to find a sublingual supplement and ran across a believably written user comment there. The writer mentioned looking at your fingernails for evidence of a B12 deficiency. I'd never heard of that, but just in case he did know what he was talking about, I googled for fingernails and B12.

It turns out that there are all sorts of things about your health that you can find out from a close look at your fingernails! Amazing! A few links:

http://www.health-boundaries-bite.com/Fingernails.html
http://www.aafp.org/afp/2004/0315/p1417.html
http://search.medscape.com/news-search?newSearc...xt=B12+fingernail

The most important usefulness in knowing something about diagnosis via looking at fingernails is that you can find out things on your own that you might never find out any other way, including through your doctors.

It's just a rare stroke of good luck that I've bumped into someone on the web now who spent some time thinking about my post and who also knows a lot. Otherwise, it would be a fingernail diagnosis or none at all--if I'd managed to ever find out about fingernail diagnoses without your supplement prompt that sent me to Amazon to bump into fingernail information in the first place.

I am almost entirely devoid of half-moon white areas near the roots of the nails: just two *very thin* half-moons on the thumbs. One is so tiny you can't even see it at a glance. I should have been on B12 shots or at least B12 sublingual supplements well before now.

I've never been tested for a B12 deficiency, as far as I know or can find in looking back at the test results I have. It sounds to me like another story illustrating what you're talking about in your book: a medical patient paying tons of money to doctors every year is better off learning to do her own healthcare by looking at her fingernails! Medicine from Hippocrates' time actually works better for patients than all the fancy new stuff that doesn't get read, thought about, or acted upon???

==
Sidetrack: I just trailed off after finding a lab report from five years ago that I *accidentally* got hold off. I'd called a cardiologist's office to request a copy of the results info from a sonagram, but the person answering the phone just sent everything she saw at a glance. This included the results of testing from my internist that he had sent over to the cardiologist--positive results that I've never been told about, including abnormal results in testing for C ANCA, P ANCA, and Atypical ANCA and a letter from my cardio fellow to my internist negating the general findings I got from the cardio nurse: "You're normal."

My thoughts after seeing some of the stuff: Why test for a Vitamin D deficiency if you're not going to even tell the patient to take a supplement when they're testing more or less as operating at the bottom of the ocean? The testing was just the routine form the big practice uses? The D-25 was listed as flagged low for some unspecific reading under twenty on this one, but on another one I never heard officially about either, it was detailed as 8.7. I've been giving myself whopping doses of D-3 since then, and my testing for D has come up. But it was only an accident that I found out about the test result, and for many patients, they might have had no idea what to do with it, even if they had found out.
==

When I look over the symptoms of a B12 deficiency, I am dumbstruck at the numbers of problems associated with that deficiency that I do have, right down to the nosebleeds, which drive me crazy. Yes, I've mentioned this nosebleed problem and many other problems, many times, to many different doctors, including the big name in otolaryngology around here. My paperwork has also mentioned my longstanding anemia as a child to every doctor I've ever seen.

I don't know, my (really poor) diet as a youngster could have had a lot to do with my anemia then. But at least I'm certain that I do have a deficiency of B12 now (thank you!) anyway, and my best guess as to how that happened is that something more than advancing age is involved. Perhaps absorption problems related to Leaky Gut Syndrome are playing a large part too. Anyway, I've just ordered the Jarrows brand of sublinguals now and am so anxious to get started on them.

I wonder whether a diet that cuts back on leaky gut problems might not also render some improvement in the problems showing up in the ANCA readings that showed up on the testing I managed to accidentally receive. I've noted an association between those ANCA readings and "Wegener’s granulomatosis." I just found this in connection with ANCA results and it describes much of what I'm experiencing:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001192/

I must be in the upper 99% of the population in mucous production, from top to bottom. Especially during the last three months, I've been literally drowning in mucous.

But in the last week or so, my upper respiratory mucous problems have improved some. Perhaps because I recently started taking some particular supplements; NAC (especially NAC), Andrographis, Quercetin, Alpha Lipoic Acid, and Siberian Eleuthero? Or maybe the gluten avoidance is just beginning to help some generally. At any rate, I'm doing everything I can find to do as quickly as possible. I don't think I have all that long to figure out what to do on my own to have a prayer of reversing the health problems. But knowing I do have a deficiency, I think taking B12 is bound to help some.

tex wrote:
Lack of proper treatment can cause all sorts of adverse symptoms, including hair loss, and generally declining health, for example.


I've been slowing conking out. Literally. I do have some hope now, though! Words are inadequate to express my thanks! Best of luck to you in all the good things you are accomplishing with and for so many people here.

I couldn't tell from what you said exactly where you are in the progression toward finishing work on your book. If you are still in the stage to be looking for more ideas and links, etc. then please do post a link announcing your book intentions in a noticeable way and I'll likely post some more stuff sometime in the near future. Or perhaps you've already posted your general announcement in a separate link?

I've barely gotten started reading this forum--I'm asleep way too much of the time--but it's here that I know I'll keep finding stuff that's relevant to my health predicaments. Still, that doesn't mean I'll see or notice every post I really mean to get to reading and responding to. Any little push along the way is welcome!

Thanks again for everything you do!
_________________
Best wishes, Mary
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Leni
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 23 Jan 2013

Posts: 36
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2017 Nov 18 - 7:36 AM


Food Intolerances : gluten, fresh pork, shellfish
Location: Bensalem PA USA

PostPosted: Sat Feb 02, 2013 10:27 am    Post subject: Reply with quote

I'm B- and LC
_________________
Leni

Diagnosed with lymphocytic colitis and IgA deficiency on 1/21/13.

Anything is possible one day at a time!
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30706
User's local time:
2017 Nov 18 - 7:36 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sat Feb 02, 2013 10:44 am    Post subject: Reply with quote

Hi Mary,

Be sure that you are getting enough folic acid (vitamin B-9) also, because B-12, B-9 and iron have to be in balance. If one is deficient, this can lead to a deficiency of the others. IOW, if we're short of folic acid, we can't properly absorb and utilize the B-12 in our diet. And a B-12 deficiency typically causes an iron deficiency, etc. As I recall, the RDA for folic acid is 400 mcg, and it's best to not exceed 1,000 mcg in a daily supplement. That upper limit doesn't apply to food (it doesn't matter how much folic acid is in food, because that should be in a safe form).

Mucus congestion is a common symptom of a sensitivity to casein, the primary protein in all dairy products. Most people who are sensitive to gluten are also sensitive to casein. Most of us on this board use almond milk or coconut milk as a substitute for cow's milk. They can be found in the refrigerator near cow's milk in most grocery stores. They're available in half-gallon cartons.

There's a good chance that if you can track down all your food sensitivities and keep them out of your diet, and get your vitamin and electrolyte levels back to normal, you may find that after a period of healing, you will feel better than you've felt in decades. That has happened to many of us on this board.

Thank you for the links. I have a long way to go on the book, because I'm working on a couple of others at the same time. The biggest problem I have is finding the free time to write, but these days, everyone seems to be short of time.

You're very welcome. I hope that you will be able to get your life back.

Wayne
_________________
cowboy

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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Deb
Rockhopper Penguin
Rockhopper Penguin
unknown IP

Joined: 20 Nov 2010

Posts: 1548
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2017 Nov 18 - 7:36 AM


Food Intolerances : Gluten, still determining others
Location: Minnesota

PostPosted: Sat Feb 02, 2013 4:53 pm    Post subject: Reply with quote

Quote:
It just so happens that I'm writing a book about this topic, because it seems to be becoming more and more of an issue these days, and I think it's time to step back and take a good, hard look at the way medicine is being practiced these days. IMO, doctors are painting themselves into a corner, and they're forcing their patients to seek other ways to manage their health care.


YES!!!!!
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guitarlover

United States

Joined: 26 Jan 2013

Posts: 11
User's local time:
2017 Nov 18 - 8:36 AM


Food Intolerances : tested allergic to 66 different foods 40 years ago

PostPosted: Tue Feb 05, 2013 7:21 pm    Post subject: Reply with quote

tex wrote:
Be sure that you are getting enough folic acid (vitamin B-9) also, because B-12, B-9 and iron have to be in balance.


Hi Wayne,

Thanks so much for this information--stuff that I didn't know. I'll remain firm in my recent decisions to quit skipping doses of daily vitamins/B-complex for sure, and hope that with all that's going on in my digestive track, I'm able to absorb enough to do some good. I'm also going to investigate a liquid multi-vitamin because that is something that could stick around, at least a little bit, in my mouth. In looking for a sublingual B12, I did see one that had some extras included: B6, Folic Acid, Biotin (Wonder Laboratories). But it used Stevia as a sweetner. (I have just lately wondered whether I might have developed a reaction to Stevia, a problem that tends to crop up with anything I put into my mouth on a frequent basis.)

tex wrote:
And a B-12 deficiency typically causes an iron deficiency, etc.


Right again. I found a copy of my last blood work, which was done by my kidney specialist last summer. The RGB was flagged low at that point, but it wasn't very far below normal, so hopefully it's not in too bad a shape yet. I'll be going with the iron supplement much more frequently now, or maybe a reduced amount every single day.

I meant to carefully look that test report over after getting it, but was so tired that day... and then I forgot.

Some stuff I see in the testing here that I'm guessing is something that lots of people here might sometimes see, because I think they all have in common a relationship to inflammation somewhere: MPV high, RDW chronically high, Platelet count abnormal range, C ANCA, P ANCA, Atypical ANCA.

tex wrote:
Most of us on this board use almond milk or coconut milk as a substitute for cow's milk. They can be found in the refrigerator near cow's milk in most grocery stores. They're available in half-gallon cartons.


Thank you again; I had not noticed those products before. I've never been a milk drinker, but used to use milk all the time in cooking. It would be nice to make a sort of white sauce again. And I can well imagine actually drinking those particular products, too.

tex wrote:
There's a good chance that if you can track down all your food sensitivities and keep them out of your diet, and get your vitamin and electrolyte levels back to normal, you may find that after a period of healing, you will feel better than you've felt in decades. That has happened to many of us on this board.


You've given me all kinds of hope again here, Wayne. Thank you.

tex wrote:
I have a long way to go on the book, because I'm working on a couple of others at the same time.


Best of luck on them all! I had you figured for someone who knew a thing or two besides farming! And I looked you up at Amazon. Already a published book!!! Congratulations on all you've achieved in spite of your health problems! You are inspiring, in multiple ways. I ordered your book and can't wait to get it.

Just a thought: I'm wondering whether some farming chemicals might have been involved in the onset of your own problems. I guess that's the kind of thought no one can ever answer with any certainty, but it's the kind of thinking I'm prone to in looking back for myself. I keep working to redirect my mind toward looking forward, though...

By the way, I noticed in one of your previous posts about your LOUD digestive rumblings/motility. I really had thought at one time I must be the only one with that weirdness I'd never ever heard of anyone having. You could quite easily hear my rumblings from anywhere across the room at least by 2004, maybe longer ago than that. I guess we are all in a rumbly loud club around here.
_________________
Best wishes, Mary
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30706
User's local time:
2017 Nov 18 - 7:36 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Tue Feb 05, 2013 8:53 pm    Post subject: Reply with quote

Mary,

I doubt that chemicals were implicated in my situation, because anytime I used them, I took all the necessary precautions. And I didn't use the riskier ones. I'm convinced that my problems were triggered by a high sugar diet (which predisposes to leaky gut) for most of my life, topped off by several years of world-class stress, generated by owning and managing a rapidly-growing business, in a highly competitive field.

Yes, those unique digestive system noises definitely identify the source as someone who has MC.

Tex
_________________
cowboy

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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Lilja
Rockhopper Penguin
Rockhopper Penguin
Norway

Joined: 25 Aug 2014

Posts: 893
User's local time:
2017 Nov 18 - 1:36 PM


Food Intolerances : Gluten, casein, soy
Location: Oslo

PostPosted: Mon Oct 20, 2014 4:49 am    Post subject: Reply with quote

This is interesting.

An FB-side for celiacs here in Norway show that bloodtype O is the most common among celiacs.

Lilja
_________________
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
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Hopeful
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 08 Sep 2014

Posts: 227
User's local time:
2017 Nov 18 - 8:36 AM




PostPosted: Mon Oct 20, 2014 5:22 am    Post subject: Reply with quote

I don't know if you have read the series of books about eating for your blood type. I'm A+ and, accordingly, should eat little meat, lots of veggies, grains, legumes, goat cheese. I tried that for quite a while but gained weight and always craving meat. Type O's should live on mostly meat, specific veggies/legumes, no dairy.

It would be interesting to see if the majority that answer the poll are O's who are forced to eat according to their blood type to stay healthy.
Vegetarianism sure didn't work for THIS A type!
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