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Friends joined us after our big meal last night for champagne and talk - someone at our main meal and someone in the come-later party went to high school together, and hadn't seen one another for years.
The 15yo girl in this group was Dx with Type 1 diabetes at 12. At that time, they also determined that she has a celiac gene, and antibodies. (Which antibodies, her mother didn't remember.) But she was assured that she doesn't have to avoid gluten. It makes me so sad to think she's already been hit with a big AI diagnosis, and (of course) I am afraid there is more lurking for her. If she's going to have to adjust to GF eventually, it would be so much easier for her to start now - imagine learning this way of cooking, shopping, and eating as a teenager, before you learn a hundred other habits you have to undo. Or, on the other side, imagine trying to cope with this change, say, while at college.
I'm going to refrain from offering unsolicited opinions here. But I feared if I didn't share this thought with someone, my head might explode (or more likely, my big mouth).
Concerned, but keeping my mouth shut
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Sara
i frequently get asked do I regret not having children. Prior to the MC diganosis there was a small amount of regret, post the MC diganosis and knowing what i know now, i have NO regrets about not having children, there is no way i would want to pass on my tainted genes and would not want any child to endure digestion/health issues like i have.
in saying that, if 5 years ago someone said cerebal malaria (protected by doxycycline) or MC (?? triggered by doxycycline) knowing what i know now, I think MC is the better pick out of those two.
Cerebal malaria is for life, it flares up with fatigue and joint aches, but it has a far greater attack zone than MC.
Big pharma and a overloaded health system has conditioned people into a wait till there is a problem and then see the doctor approach. there is no encouragement to be pro-active about your health and take a preventative approach.
this extends to i dont have to worry about this now, as in 4 years time there will be a med for it!
big pharma has managed to come up with med solutions that appear as the quick fix. so where is the encouragement to be proactive about your health?
until the DeLorean DMC12 or the Doctor Who Tardis are available to all to be able to travel to the future and see the outcomes of their decisions re their health, we are stuck with being reliant on big pharma to solve the problem...
i frequently get asked do I regret not having children. Prior to the MC diganosis there was a small amount of regret, post the MC diganosis and knowing what i know now, i have NO regrets about not having children, there is no way i would want to pass on my tainted genes and would not want any child to endure digestion/health issues like i have.
in saying that, if 5 years ago someone said cerebal malaria (protected by doxycycline) or MC (?? triggered by doxycycline) knowing what i know now, I think MC is the better pick out of those two.
Cerebal malaria is for life, it flares up with fatigue and joint aches, but it has a far greater attack zone than MC.
Big pharma and a overloaded health system has conditioned people into a wait till there is a problem and then see the doctor approach. there is no encouragement to be pro-active about your health and take a preventative approach.
this extends to i dont have to worry about this now, as in 4 years time there will be a med for it!
big pharma has managed to come up with med solutions that appear as the quick fix. so where is the encouragement to be proactive about your health?
until the DeLorean DMC12 or the Doctor Who Tardis are available to all to be able to travel to the future and see the outcomes of their decisions re their health, we are stuck with being reliant on big pharma to solve the problem...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I totally agree with you Sara, I have never actually met people (children) with other auto immune diseases and antibodies for gluten in their blood and doctors telling them "keep on eating gluten", but read enough stories about it.
Especially with young children, parents are desperate, after a lot of tests with negative results, they put their children (finally) on a gluten free diet and all the problems solved (sometimes within days). But what do they do? Go back to the doctor, he/she is saying "you put your child on a diet without a reason" "are you sure you want to do this to your child" "it is a very complicated diet" etc. etc. etc. And what do parents do? Put their children back on normal food with gluten and they are back at square one..........sigh........and than they start writing over and over their story again on the celiac message boards. How good things were when they were gluten free and how bad things are now, but the doctors says................ than I think use your own common sense. The good thing about a gluten free diet, you don't need anybodies permission to start it and even a doctor can't forbid you to follow it. Really that is what I really love about our MC treatment plan, we can all do it ourselves. We can get ourselves tested at enterolab and based on that we can design our own diet. For many other things we have our own experts here, so what more do we need??
Although last time I read a message of a member of the hospital in Leuven (belgium), where a professor/pediatrician with a lot of common sense is working, blood tests and biopsy can be positive or negative. If a child gets much better after a gluten free diet and gets worse after eating gluten again, the child is allergic or sensitive to gluten and should stay gluten free, end of story.
But yes even adults with a positive blood test but negative biopsy, the advice is still to stay on gluten. I really cannot understand this attitude. Well maybe if you have no complaints at all, but if you all kind of health issues, why not give it a try.
Especially with young children, parents are desperate, after a lot of tests with negative results, they put their children (finally) on a gluten free diet and all the problems solved (sometimes within days). But what do they do? Go back to the doctor, he/she is saying "you put your child on a diet without a reason" "are you sure you want to do this to your child" "it is a very complicated diet" etc. etc. etc. And what do parents do? Put their children back on normal food with gluten and they are back at square one..........sigh........and than they start writing over and over their story again on the celiac message boards. How good things were when they were gluten free and how bad things are now, but the doctors says................ than I think use your own common sense. The good thing about a gluten free diet, you don't need anybodies permission to start it and even a doctor can't forbid you to follow it. Really that is what I really love about our MC treatment plan, we can all do it ourselves. We can get ourselves tested at enterolab and based on that we can design our own diet. For many other things we have our own experts here, so what more do we need??
Although last time I read a message of a member of the hospital in Leuven (belgium), where a professor/pediatrician with a lot of common sense is working, blood tests and biopsy can be positive or negative. If a child gets much better after a gluten free diet and gets worse after eating gluten again, the child is allergic or sensitive to gluten and should stay gluten free, end of story.
But yes even adults with a positive blood test but negative biopsy, the advice is still to stay on gluten. I really cannot understand this attitude. Well maybe if you have no complaints at all, but if you all kind of health issues, why not give it a try.
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
I have been thinking about this since I read it earlier today. I am with you, Sara. The son of good friends was Dx with Type I diabetes at age 11. He has an implanted insulin pump. His uncle, who has celiac disease and reacts to even molecules of gluten, was recently diagnosed with non-Hodgkins lymphoma. His aunt on the same side, doesn't feel well much of the time and goes back and forth on being gluten-free depending on how much she wants to eat something. Her daughter (his cousin) just put her whole family on the GAPS diet because of ongoing GI issues, and she has been GF and DF for years.
His mother is quite "up" on health issues, and is well-acquainted with my journey, but... It is said that you can lead a horse to water and can't make him drink, but you can salt his oats. I have tried salting the oats with her a little bit, but there is somewhat of a "see no evil" issue there, too. I totally identify with you. It is quite frustrating.
His mother is quite "up" on health issues, and is well-acquainted with my journey, but... It is said that you can lead a horse to water and can't make him drink, but you can salt his oats. I have tried salting the oats with her a little bit, but there is somewhat of a "see no evil" issue there, too. I totally identify with you. It is quite frustrating.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
It's not the patient's fault - it's the doctor's fault for being wrong, and pretending to be right. As patients, we want to trust our doctors, (after all, they're the ones with all the expensive medical training), so we're afraid to rely on our own judgement, (over our doctors' judgment), because that would be proof that we distrust our doctors, and we're also afraid to ignore our doctor's advice, just in case it might somehow be harmful to our health. Most patients probably still think that all doctors take the Hippocratic oath, seriously. 
I'm sure that some of them do, but I have some doubts about more than a few of them, in a certain specialty. 
This board is one of the few places where such a high percentage of members are willing to follow their instincts, over their doctor's advice, in order to get their life back.
Tex
I'm sure that some of them do, but I have some doubts about more than a few of them, in a certain specialty. This board is one of the few places where such a high percentage of members are willing to follow their instincts, over their doctor's advice, in order to get their life back.
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 all, for your thoughtful replies...
Harma - I am right there with you, I love the same thing about MC - we are our OWN experts. A neighbor confided in me today that he was sure, at first, that I was wrong about my 'self-diagnosis' of gluten intolerance, but he really respects that I did my research, and the Enterolab tests are measuring something real. To him, the real story is, I am well, and I look so much better, so - WHO CARES what the expert thinks, or where they draw the line about celiac disease (which I truly believe is a misnomer, as well as being inaccurately described, but that is another story).
Marliss, I didn't know that expression about "salting someone's oats" - I like that ;) I'll be thinking along those lines, if/when I can do so graciously. And Tex - this Hippocratic oath biz gets me quite worked up. My friend who did Enterolab testing for her kids has been advised again to put them back on gluten, but she absolutely won't. I just can't imagine the ethical stance there, not to mention the absence of compassion... I really do respect her for listening to my assertion that not having villous atrophy might actually be Good News and yet not an indication that gluten is OK - and then attempting to *achieve* villous atrophy is a pretty lame goal. My Type 1 young friend is at the very prestigious diabetes center at Columbia - and I am really glad I didn't pursue the 'celiac experts' there, given what I now know about how they are thinking up there. Just imagine the unnecessary suffering.
As far as I am concerned any doctor who advocates resuming or continuing gluten in order to achieve better test results is disqualified from practicing on my or anyone I care about. That is seriously irresponsible advice to anyone who *even might* be suffering from gluten damage, given the availability of Enterolab testing, plus the simple empirical measure of attempting GF and seeing if it makes a difference, plus gene testing. IF there is a celiac gene, AND there are symptoms - cut that @*! out of the diet.
See how simple things would be, if I were in charge
Love,
Sara
Harma - I am right there with you, I love the same thing about MC - we are our OWN experts. A neighbor confided in me today that he was sure, at first, that I was wrong about my 'self-diagnosis' of gluten intolerance, but he really respects that I did my research, and the Enterolab tests are measuring something real. To him, the real story is, I am well, and I look so much better, so - WHO CARES what the expert thinks, or where they draw the line about celiac disease (which I truly believe is a misnomer, as well as being inaccurately described, but that is another story).
Marliss, I didn't know that expression about "salting someone's oats" - I like that ;) I'll be thinking along those lines, if/when I can do so graciously. And Tex - this Hippocratic oath biz gets me quite worked up. My friend who did Enterolab testing for her kids has been advised again to put them back on gluten, but she absolutely won't. I just can't imagine the ethical stance there, not to mention the absence of compassion... I really do respect her for listening to my assertion that not having villous atrophy might actually be Good News and yet not an indication that gluten is OK - and then attempting to *achieve* villous atrophy is a pretty lame goal. My Type 1 young friend is at the very prestigious diabetes center at Columbia - and I am really glad I didn't pursue the 'celiac experts' there, given what I now know about how they are thinking up there. Just imagine the unnecessary suffering.
As far as I am concerned any doctor who advocates resuming or continuing gluten in order to achieve better test results is disqualified from practicing on my or anyone I care about. That is seriously irresponsible advice to anyone who *even might* be suffering from gluten damage, given the availability of Enterolab testing, plus the simple empirical measure of attempting GF and seeing if it makes a difference, plus gene testing. IF there is a celiac gene, AND there are symptoms - cut that @*! out of the diet.
See how simple things would be, if I were in charge
Love,
Sara
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Sara,
It's hard to know how much to say (i.e., how much others will accept what you say), but it's also hard to watch someone else go through needless pain and angst when you know what will help. Some food for thought: I was talking today with my SIL, whose daughter is certainly GS and probably celiac. My niece went through years of severe constipation, slow growth, and various health problems. She got to the point that her anal nerves were damaged and she could no longer feel an urge to go to the bathroom. After many tests (imagine putting a 7-year-old through a colonoscopy!), a renowned GI specialist told her parents the only solution was for them to remove 12 inches of her colon. My SIL was convinced there was a connection to her diet, and the doc told her she was delusional. Fortunately, the parents trusted their intuition instead of the doctor and put her on a GF diet. Miraculously, all her problems resolved! How terrible it would have been for this little girl if her parents had followed the doctor's advice.
It's hard to know how much to say (i.e., how much others will accept what you say), but it's also hard to watch someone else go through needless pain and angst when you know what will help. Some food for thought: I was talking today with my SIL, whose daughter is certainly GS and probably celiac. My niece went through years of severe constipation, slow growth, and various health problems. She got to the point that her anal nerves were damaged and she could no longer feel an urge to go to the bathroom. After many tests (imagine putting a 7-year-old through a colonoscopy!), a renowned GI specialist told her parents the only solution was for them to remove 12 inches of her colon. My SIL was convinced there was a connection to her diet, and the doc told her she was delusional. Fortunately, the parents trusted their intuition instead of the doctor and put her on a GF diet. Miraculously, all her problems resolved! How terrible it would have been for this little girl if her parents had followed the doctor's advice.
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Wow, Cynthia, that is quite a story. And Lesley, best of luck bringing your son to this understanding. I hope he doesn't have to go too far down the path of illness to be willing to give it a try. I hope you yourself start to really enjoy the benefits of the hard work of eliminating foods, by feeling better, and I hope that will attract his curiosity.
I think this is a potentially truly heartfelt topic for many of us. A friend of mine told me she was sorry I wouldn't be at their Thanksgiving table, because she wanted me to speak to their friend who is really having health issues. As it turned out, he was too ill to attend (and I hope he's not in the ER right now). And - this guy is tiny, even compared to me - I would not be surprised if it were to turn out that he is a long-time undiagnosed celiac, though the idea that I would say anything helpful about this, in a single conversation over a single meal, seems unrealistic. (And of course, I don't think the person telling me all this is doing herself any favors eating gluten, either - what a cascade of AI issues she has had... she is very private and I am very respectful, and I was surprised that she wanted me to 'consult' with their friend who's been sick).
When her husband told me tonight, that he had sure I was wrong, but I was right - it was really an amazing feeling. I have sort of seen that people didn't really believe it, or thought it was part of the GF 'fad' - and that people have been coming around. But he really said it right out loud, and to him, the proof is that I am well - i look much different, much healthier.
(Still think I'm going to need to work on watching my mouth.)
I think this is a potentially truly heartfelt topic for many of us. A friend of mine told me she was sorry I wouldn't be at their Thanksgiving table, because she wanted me to speak to their friend who is really having health issues. As it turned out, he was too ill to attend (and I hope he's not in the ER right now). And - this guy is tiny, even compared to me - I would not be surprised if it were to turn out that he is a long-time undiagnosed celiac, though the idea that I would say anything helpful about this, in a single conversation over a single meal, seems unrealistic. (And of course, I don't think the person telling me all this is doing herself any favors eating gluten, either - what a cascade of AI issues she has had... she is very private and I am very respectful, and I was surprised that she wanted me to 'consult' with their friend who's been sick).
When her husband told me tonight, that he had sure I was wrong, but I was right - it was really an amazing feeling. I have sort of seen that people didn't really believe it, or thought it was part of the GF 'fad' - and that people have been coming around. But he really said it right out loud, and to him, the proof is that I am well - i look much different, much healthier.
(Still think I'm going to need to work on watching my mouth.)
Very glad for you!i look much different, much healthier.
My son is actually very aware of the effect of diet on health. He has been into healthy eating for quite a while. When he goes off his diet he really feels awful, but he still has some issues that make me believe he needs to get off gluten. Yesterday he was ready to go for it. Today, faced with fresh flour tortillas, he couldn't resist.
Tomorrow I will try again.
It's a toughie, Lesley - because until you entirely eliminate gluten, you don't get the benefits of GF... and you have to try it for more than a day or two, longer than a week or two. My neighbor was talking about this today - so much of what we're taught about healthy eating is about moderation, and 'legal cheats' or whatever they call that. Or about the 80/20 rule - if you eat 80% "right" then you'll be fine, don't worry about the other 20%.
I believe your son may be heading in the right direction, just a little slow to get there. (And btw, if "unable to resist" doesn't teach us about the fierce force of gluten as an addictive substance... wow, I don't know what would - not picking on your son, but in general, I really do see this, all the time.)
Thanks for your kind thoughts,
Sara
I believe your son may be heading in the right direction, just a little slow to get there. (And btw, if "unable to resist" doesn't teach us about the fierce force of gluten as an addictive substance... wow, I don't know what would - not picking on your son, but in general, I really do see this, all the time.)
Thanks for your kind thoughts,
Sara
Lesley - perhaps you can get your son to test at Enterolab, and that will convince him? My son was starting to have thyroid issues, and minor signs of GI problems, so he went along with the test (I paid for it), and tested positive 
. Since I have 2 celiac genes, we thought it also wise to have my 3 grand-children tested - and voila, they all tested positive with high numbers!!! Now their household is entirely gluten free, and their diet is so much healthier, as are they.
Sara - you seem to be doing a good job in finding the balance of when and how to "advise". I agree, so many more people (actually in my opinion most) would be wise to get off gluten. I think more than anything, people are simply creatures of habit, so unless something starts screaming in their face, they tend to ignore it (my sisters are case in point). It does take a lot of effort and willpower to eliminate gluten (unless you have unbearable symptoms), as it is so pervasive. I don't know if it is wishful thinking on my part, but I sense that GF is getting more and more attention in restaurants and markets, and hope this seeming trend will continue
.
Love,
Kari
. Since I have 2 celiac genes, we thought it also wise to have my 3 grand-children tested - and voila, they all tested positive with high numbers!!! Now their household is entirely gluten free, and their diet is so much healthier, as are they. Sara - you seem to be doing a good job in finding the balance of when and how to "advise". I agree, so many more people (actually in my opinion most) would be wise to get off gluten. I think more than anything, people are simply creatures of habit, so unless something starts screaming in their face, they tend to ignore it (my sisters are case in point). It does take a lot of effort and willpower to eliminate gluten (unless you have unbearable symptoms), as it is so pervasive. I don't know if it is wishful thinking on my part, but I sense that GF is getting more and more attention in restaurants and markets, and hope this seeming trend will continue
.Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Lesley,
I can be a bit of an extremist myself, which sure came in handy when the gluten monster made itself known in my life. (In fact, it's just that sort of "impossible to bear" aspect that I'm trying to keep reined in, in myself!)
Kari,
I agree that many, many people would be far better off GF - hardly anyone seems to reach middle age without something going on that might be resolved with diet. I do think we're lucky that MC started screaming at us, because otherwise, I might be quietly accumulating 'aches and pains' and 'minor complaints' each year, until the total picture was far worse. At this party yesterday, I looked around at people 10 years younger than me, and more, and I do not envy their vitality. I also see what you're seeing, too, that gluten awareness is increasing, and though this leads quite a few people to be 'tourists' at GF, which doesn't work once the reactivity is truly triggered, maybe it is also a hopeful sign...
Love,
Sara
I can be a bit of an extremist myself, which sure came in handy when the gluten monster made itself known in my life. (In fact, it's just that sort of "impossible to bear" aspect that I'm trying to keep reined in, in myself!)
Kari,
I agree that many, many people would be far better off GF - hardly anyone seems to reach middle age without something going on that might be resolved with diet. I do think we're lucky that MC started screaming at us, because otherwise, I might be quietly accumulating 'aches and pains' and 'minor complaints' each year, until the total picture was far worse. At this party yesterday, I looked around at people 10 years younger than me, and more, and I do not envy their vitality. I also see what you're seeing, too, that gluten awareness is increasing, and though this leads quite a few people to be 'tourists' at GF, which doesn't work once the reactivity is truly triggered, maybe it is also a hopeful sign...
Love,
Sara
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Sara, I agree--since most people have to get much worse before they are diagnosed, I count myself very lucky. Since I'm only 40, the GI wouldn't even have done a colonoscopy were it not for the fact that I have a strong family history of polyposis and colon cancer. Now I'm focused on making sure my kids don't get sick. If it turns out I'm a genetic mess, I'm putting the whole family on a GF diet!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder