Monday, 26 November 2007
Years ago, when we first started this new path of a gluten free diet, this was not the case though. They would want to try to make something nice for us, do a perfect job... and then throw gluteny potato chips on as a topping, leaving us with no dinner to eat but raw veggies at that point.
My father, especially, had great difficulty understanding how little gluten it took for the children to become ill. Eventually, I 'stubborned' him into accepting that I would not be changing my strict stance. After a couple of honest slips got by me though, and the children got quite ill, he couldn't deny the fact that indeed, even non-visible amounts of gluten could make them sick.
It seemed a long road to travel though and for me it was an exercise in frustration because most people cannot tell, via ingredients, the difference between gluten free potato chips and regular potato chips. Heck, even this last weekend, my Mom bought Rice Dream rice milk, even after I had told her, countless times, that the Rice Dream company is risky to deal with.
"Yu Milk Ma." I tell her, several times a year. "It's Canadian. It's organic. And it's gluten free. It's even supplemented with the kind of enzymes that are safe for Celiacs. Buy Yu Milk Ma."
Two weeks later she tells me she's bought yet another carton of Rice Dream... sigh. She's a real gem of a Granny and I know she means well... but...
Anyway, over time, we also realized that the children required much more than just a gf diet at their gluten laden house. And no, their house is not filthy. Actually it's much cleaner on its worst day than my house is on its best day. Nevertheless, every time we visited, the children would always come away just a little bit sick - or more.
Eventually, we agreed that it was just too risky for the children though and so we stopped visiting them and they just came to our totally-gf-house all the time... And hands and mouths were washed before kisses were given. They are, after all, awesome grandparents who enjoy giving their grandchildren lots of hugs and kisses but toxic gluten laden kisses became of issue at some point too.
Well, we finally got everything right and a visit from loving Grandparents became a non-toxic affair that was no longer guaranteed to be followed by several miserable days (or weeks - as an untreated glutening can appear as a virus and last 7 to 10 days).
A couple of years passed in this way and as the children got older, they expressed more of a desire to visit other homes. I had no idea what to do. I wanted to let them go but I didn't want them to get sick.
Feeling like their health and safety should be my primary concern, I spent a great deal of time thinking about how the children could go about visiting other homes safely.
And so, as good grandparents should, we were allowed to visit their house and ask them to jump through all sorts of hoops so that we could figure out the lay of the gluten, in a gluten filled home.
We made a lot of mistakes that first year. However, we finally figured out that the children were a lot less sick if we covered the kitchen table and kept it covered.
Then we figured out that their animals needed to stay gluten free while we visited - because kids think dog licks are both fun and funny... no matter how many times their mother screams, "They lick their bumbs with *that* you know!"- Actually, I'm now thinking that it might have been partially my fault for all the licking that took place as the children seemed to revel in having me say these words again and again.
But I digress. We also figured out that the furniture around the television was a gluteny spot that was making them sick. So, to throw a fitted sheet over the couch and instruct the children that *this* is the only piece of furniture for them to sit on, we scored another victory.
Eventually, we were fully successful in coming away from their home sans maladies (without illnesses).
We were heady with success. We got cocky. And now after this last visit, the children are all sick and needy again. We think it was the couches. We didn't cover them. Granny thought it would be fine. I did not do my regular inspection. I failed to do what I always tell the children to do...
1) Make sure the table and a couch are newly covered while you are there and can see it being done.
2) Make sure the kitchen dishtowels and cloths are tossed in the laundry and new ones put out.
3) Go and wipe the door handles of every room you're going to use. (baths, entries, fridge, computer)
We mastered our 'systemic protocol' and then snubbed our noses at success, brushed off our hands and decided we didn't need it anymore.
Sigh... All I can say is, it serves us right. On the bright side though, we've once again got confirmation that our three tiered protocol is required and not to be sullied by laziness, embarrassment or heady success.
Sunday, 25 November 2007
Sensitive people, especially children, have to be more careful than most. This has led me to begin looking for alternatives to plastics and stuffed animals that off-gas for unknown periods of time. Other toys have corn in them. I was really quite surprised to find this out since corn is one of the top offenders. However, I know a lady who, every time she would clean up one particular toy of her daughter's, would become ill shortly afterward. She eventually called the company to find out that indeed, that little rubbery toy contained corn.
Really, that's not the worst thing... most toys have stuff in them that is not even pronouncable... and your child, dog or spouse could be knawing on it! - Well, okay, maybe not your dog... because you wouldn't leave the toys where the dog could get at them.
I was reading, just the other day in "The Virtuous Consumer" by Leslie Garrett (a book that I totally love because this woman comes from the same planet I do) that even toys that are labelled as 'non-toxic', when tested often show the very toxins that they claim to be devoid of!
So, in my search, I have become aware that two people who I already knew, are currently practising the art of felting. I'm shocked and amazed that I know people who do this! It really does pay to just chitchat with people. They'll divulge all kinds of information about themselves that you would normally never know. ;)
My organic farmer's daughter is creating a line of animals, and a set of six Christmas balls for me at my request. And a fellow gluten free lady who I met via the internet but have come to regard as a friend, makes dolls and ornaments.
For now, I only have photos of the dolls but will come back later and add more of my Christmas tree with the felted balls, as well as some of the 'stuffed' animals.
The benefit to this art is that there is no polypropelene filling and hence, no off-gassing. The materials used are simply sheep wool and plant-based dyes or koolaid for colour.
Though pricey, the idea of my child sleeping with a toy that is off-gassing in his/her little face makes me shiver... Therefore, I'll pay more so that I can sleep better. :)
Here are some of Leslie's dolls:
I was absolutely thrilled to be told that the one in the blue and pink, with the long auburn ponytail was inspired by a photo of me. I had to share this because it's not often in one's lifetime that this type of honour befalls them.
I cannot tell you the relief and delight I am now experiencing, knowing that this 'antique' art has not been completely lost to our modern day world!
This discovery has also spurred me forward to consider other forms of toys that are safer for everyone, including we(e) sensitive folks. ;)
And so soon, I'm hoping to have a full repetoire of toy possibilities that are not only *really* non-toxic but also earth friendly.
Sunday, 18 November 2007
Mary Shomon's Article
Considering that doctors like this enjoy giving us labels... I thought I'd respond in kind... even though I usually try not to do so as I find it too self-effacing.
Thursday, 15 November 2007
As a matter of fact is has been "proven" that one of the three things required to "cause" celiac disease is ingestion of gluten.
Of course this makes sense because ingestion of gluten is what causes damage:
Gluten Ingestion A Cause of Activation in Intestinal Damage
"immune-mediated enteropathy triggered by the ingestion of wheat gluten or related rye and barley proteins in genetically predisposed individuals carrying the human leukocyte antigens (HLA)-DQ2 or -DQ8"
So, if you have these genes and ingest gluten, you could be risking your health, possibly for the rest of your life. How so? Because of the possibility of establishing refractory (untreatable) celiac sprue.
Why is refractory sprue a risk? Here's my big pet peeve - because testing will only show positive with end stage damage. It's like waiting until you have a heart attack to live a heart-healthy lifestyle - In my view that's ridiculous! Don't even get me started on the ridiculous "boardroom decision" about what level of Marsh lesion is required to get a 'gold standard diagnosis' and the possibility offered to you that diet might work for you! (And if the damage is patchy enough, they won't catch a spot with a lesion and you'll never get a diagnosis!)
How about this one, you have diabetes but it's not bad enough to treat with diet... we'll wait until you require ample medication to deal with other issues as they arise... then we'll look at altering your diet so that you don't get worse. Again, ridiculous! So why do people with gluten sensitivity have to wait to be 'end stage' before getting preventive treatment!!!
Also, many people who will never experience "true" celiac disease may only have neurological issues present like, depression, fibro, headaches, seizures, multiple sclerosis, ataxia. Of course not all together but these are only a few things that I've heard of/experienced resolution on a gf (and sometimes more) diet.
Science is only now beginning to see that neurological implications can manifest without 'apparent' intestinal mucosal alterations:
Neurological Presentation of Celiac Disease
"However, more recent studies have emphasized that a wider spectrum of neurologic syndromes may be the presenting extraintestinal manifestation of gluten sensitivity with or without intestinal pathology."
Please note: "without intestinal pathology"
I know that my first symptom is headache, my second is depression (I'll experience a fairly sharp downswing - even on a good day where nothing has 'gone wrong'). I have no bowel issues that are as blatant as these two neurological symptoms.
And yes, I have to be extremely careful... Lindt chocolate, who uses barley malt has been a prime cause of symptom upheaval for me on several occassions! :embarrassed: I kept trying it because I really didn't want it to be true. :embarrassed:
Please also see Great Gobs... I mean, Blogs of Gluten for a link to the Renegade Neurologist's post about Seizures and Gluten.
Saturday, 10 November 2007
Behavioral issues are the number one indicator that 'toxic' foods are being ingested.
People who have not responded to gf/cf have responded to SCD. These people include those who were looking for a medicine-free (or reduced) way of controlling add, adhd, bipolar, depression, autism (anywhere on the spectrum), ibs, ibd, Crohn's, celiac, polyps, schizophrenia and/or seizures.
It is an incredible diet that has saved many people's quality of life. I must say, however, that like any diet, you must tailor it to meet your own needs (the same goes for the gf/cf diet and any 'book' diet).
Books are guides only. For example, though tomatoes are generally allowed in most diets, people who react to the nightshade family (whether they know it or not - often not) will wonder why the 'diet' is not working for them.
"Which diet is right for me?" is a question I hear very often. The answer lies in the foods that you react negatively to. Most people do not realize which foods are negatively affecting them.
So, at the beginning, a more strict diet may be needed (SCD). Then, as the gut heals, a less strict diet may be maintained (gf/cf). It all depends on the person and how long it takes the gut to heal.
It is better to be more strict at the beginning than less. For example, if only gluten is removed from the diet but the person is continuing to ingest (and react to) dairy, then they will not note much improvement (if any).
A tailored SCD is often the best place to start. An overview of SCD can be found at pecanbread.com.
Here's the blast:
Whilst the writer's intentions to be of help for others is
commendable the information provided is worse than benign, but is in
fact certain to do more harm than good.
the concept of "controlling" referred to by the writer) does not
include "...add, adhd, bipolar, depression, autism (anywhere on the
spectrum), schizophrenia and/or seizures. "
I encourage those committed to using independent and expert sources
of information to guide therapeutic decisions to use a Consumer
Reports affiliated resource - "MedicalGuide.
XXXXXXXXXXXXX MD, MSc, FRCPC (Psychiatrist)
Full Time Faculty
Department of Psychiatry
XXXXXXXXX School of Medicine
University of XXXXXX Ontario
And if you thought I was wordy in the first response... Well, have I got words for you! :D
He has now been hospital free for six years (except for once when I let him eat a small bowl of ice cream for five days in a row that landed us back at McMaster, where they sent me back home to deal with his diet and clearing out his gut on my own once again).
I have learned over the years, that as miraculous as his recovery was, it pales in comparison to the stories of many other children (autistic, seizures, more) whose only treatment ended up be withdrawal of foods to which they were sensitive. Some do need to continue meds too... but at a greatly reduced rate!
Below, I will add some scientific documents for those who like to see that backup... I will also list some support groups of parents who have seen their children's lives absolutely turn around to be, in some cases, even better than their parents expected.
Sorry this is long but... I want children who are not getting the help they need, to finally get it. I may not be a doctor but I am still a competent human being who can read, do my own research, come to reasonable conclusions, and apply things that improve my quality of life... and so can other people.
I went on the diet myself (because indeed, there's nothing harmful in trying the SCD for the 'average' person who is not on any meds) in support of my son. I was *completely* surprised at my own improvements. I truly thought that *he* had the issues... but obviously with the disappearance of many of my own rather minor complaints, there is no denying that it is possible that there is a genetic basis for food intolerance/allergy/etc.
Here are some of my own (again, minor things that I thought I *had* to accept as part of my life) issues that, to this day, surprise me. Once in a while I will test them because there's a bit of me that still doesn't believe it... Sometimes the tests are blind because I've not paid enough attention to a packaged food I've picked up. In the end, there's just no denying it, food affects us, both to the positive and to the negative. Whether we choose to be aware of that... is another thing altogether:
gluten: cankar sores, migraines, daily chronic headaches, depression, and more (for those who want to know what other symptoms can be resolved by gluten removal - which are almost countless - check the GFAB site in the support list I've given at the bottom.)
dairy: leg pain, back pain (dull-ache in the lower back), after pregnancy incontinence
yeast: patience becomes almost non-existent (a blind test was done with some yeast-based selenium - it made me really blow my top easily - that one was a real surprise... I knew it was the selenium but didn't know why... I kept the bottle and realized almost a year later that it was yeast-based. I have since taken selenium that is not yeast based and was fine.)
coffee: depletes magnesium and leaves me with cold feet and hands and *itchy. Magnesium supplements take care of this... but what else is it depleting that I'm not aware of? Now I limit coffee to the weekends. I know people who can't drink it at all though because it really skews their behaviour. It's nice to know I'm not alone in this reaction.
Here's quote from usadrug.com re: magnesium
I know that I can get quite *itchy if I ingest too much coffee. I also know it's easy enough to fix... stop drinking coffee. So, it's not that I'm a huge advocate of supplements... but I'm a huge advocate of finding out why you're not getting enough nutrients and then changing that scenario in as natural a way possible... and the types of food being ingested is something that we can all control.
Like all treatments, diet change doesn't work for everyone. Is it that they don't commit fully to what is required for the 'diet to work? Sometimes. Sometimes people do it 'wrong' because they just don't know what/how to achieve what they want.
I was one of these people. That's why it's important to seek someone who can help, read books and educate yourself... even many docs don't know that if you switch to goat diary or gluten free bread you may need to supplement your B vits... particularly folic acid. In my case, I couldn't find any help until *after* I had already worked out all the kinks (the doctors at Dr. Issenman's office at McMaster were the first doctors who could offer me any information that was even remotely helpful. We were already about 2 years on *our* special diet at that point.)
However, it is much less harmful to try a diet change than to ingest *more* toxic stuff and never get rid of the *cause* of the issue. So why not try a diet change *first*?
What if the only issue is that you are consuming a food that is toxic for you (as it was for my son)?
Removal of that food can and does alleviate the issues that people have all the time... It promotes healing rather than the 'covering up' of symptoms. I urge people who are interested to read more to go to the sites where, literally, thousands of families get together to compare notes and help eachother:
Almost 3000 families here... and that doesn't include many, like mine, who don't belong anymore because we've moved on to the gf/cf diet successfully (and after spending some time helping people there)... It's an awesome place to start to heal and figure out what's best for *your* family:
Here is another, to which I belong, that is based largely upon keeping updated in the various science fields that are exploring the impact of food (both positive and negative) on health. Over 100 families support eachother here and it has only been up and running for a few months. It was built more for the sake of being able to compile information (scientific)in a more controlled environment:
GFAB, listed above is an off-shoot of Neurotalk and Braintalk, sites that also support hundreds of families. Just look up 'gluten sensitivity' and you'll find lots of other support groups too.
Elaine Gottschall earned degrees in nutritional biochemistry and cellular biology. I believe she also worked at Western U. in London. She was also invited to many physician-based conferences including DAN (Defeat Autism Now) Conferences. She has since passed on (just this last year) but her book and support groups that she helped to establish continue on to help many families all around the world. Why are these people so passionate? They are passionate because 'diet' has changed their lives for the better.
Here's another support group of Moms who will help to identify food sensitivities in infants by acknowledging common sensitivity signs that we are typically taught to ignore.
They are an awesome group of ladies who have *loads* of good advice. What's even better is watching the children get less fussy, the Moms become more relaxed and happy... and then move on to help other infants and Moms. Fabulous stuff!!
(Less spitup, less crying, less colic, less diaper rash,... what could possibly be better than that?!)
And below here is a very little taste of the kinds of abstracts that back up diet having crucial impact on the healing of people who need healing... and many of them are in psych journals but really it's all over the medical map... Why? Because if you're eating something that is toxic for you, then your nutritional absorption can be less or skewed which affects every system in the body... It's a no-brainer.... Really :D
...Preliminary evidence suggests that a gluten-free diet may help improve symptoms of rheumatoid arthritis. In one trial, 14 weeks of a gluten-free (no wheat, rye or barley), pure vegetarian diet, gradually changed to a lactovegetarian diet (permitting dairy), led to significant improvement in rheumatoid arthritis as evidenced by associated symptoms as well as by objective laboratory measures of disease.
HIV enteropathy, a complication of AIDS that is characterized by weight loss and chronic diarrhea, may respond to a gluten-free diet. In a preliminary trial, men with HIV enteropathy experienced a reduction in the number of episodes of diarrhea as well as significant weight gain while following a gluten-free diet.
For many years, researchers have been speculating that certain dietary proteins, including gluten, may contribute to the symptoms of schizophrenia. People with schizophrenia are more likely to have immune-system reactions to gluten than the general population, according to some studies. While clinical research findings have been inconsistent, some, but not all, people with schizophrenia may benefit from a gluten-free (and dairy-free) diet....
(There are other papers done on gluten sensitivity in people who do not test positive for celiac disease. Don't have time to look them up right now but you can go to GFAB and ask there - they will direct you. The bottom line in them is the same as this paper though.)
Gluten-free diet may alleviate depressive and behavioural symptoms in adolescents with coeliac disease: a prospective follow-up case-series study
Päivi A Pynnönen1 , Erkki T Isometsä2 , Matti A Verkasalo1 , Seppo A Kähkönen3 , Ilkka Sipilä1 , Erkki Savilahti1 and Veikko A Aalberg1
1Hospital for Children and Adolescents, Helsinki University Central Hospital, Helsinki, Finland
2Department of Mental Health and Alcohol Research, National Public Health Institute, Helsinki, Finland
3BioMag Laboratory, Engineering Center, Helsinki University Central Hospital, Cognitive Brain Research Unit, University of Helsinki, Helsinki, Finland
BMC Psychiatry 2005, 5:14doi:10.1186/1471-244X-5-14
"...diet treatment may alleviate psychiatric symptoms, and earlier diagnosis may have beneficial effects on psychological and even on neurobiological vulnerability..."
Journal of Neurology Neurosurgery and Psychiatry 2003;74:1221-1224
© 2003 BMJ Publishing Group
Dietary treatment of gluten ataxia
M Hadjivassiliou1, G A B Davies-Jones1, D S Sanders2, R A Grünewald1
1 Department of Clinical Neurology, The Royal Hallamshire Hospital, Sheffield, UK
2 Department of Gastroenterology, The Royal Hallamshire Hospital
Dr M Hadjivassiliou, Department of Clinical Neurology, The Royal Hallamshire Hospital, Glossop Road, Sheffield S10 2JF, UK;
Background: Gluten ataxia is an immune mediated disease, part of the spectrum of gluten sensitivity, and accounts for up to 40% of cases of idiopathic sporadic ataxia.....
What do you think this girl suffers from?
An eating disorder was suspected based on a rapid decrease in body mass, loss of appetite, diarrhea, and vomiting after meals. The athlete was removed from volleyball activity soon after her condition began to affect not only her performance but also activities of daily living. In addition to fatigue at team practices and during team meals, the athlete struggled with fatigue while attending class and began deferring social engagements. Additionally, the volleyball coaches observed a decline in her athletic performance. To identify disordered eating behavior, the coaching and sports medicine staff monitored her behaviors before, during, and after practices, competitions, team meals, and during team travel. The athlete was observed falling asleep at meals, in the team van or bus, and before and during practices in which she was not participating.
Many people thought she had anorexia. They are now finding that many anorexics are being misdiagnosed and are being forced to eat the very food that is making them sick in the first place - bread!!!
Here's the link to read it for yourself at Pubmed: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1323299
If there are thyroid issues in your family... there could be gluten issues at the base of it:
Am J Gastroenterol. 2001 Mar;96(3):751-7.Links
Prevalence of thyroid disorders in untreated adult celiac disease patients and effect of gluten withdrawal: an Italian multicenter study.
Sategna-Guidetti C, Volta U, Ciacci C, Usai P, Carlino A, De Franceschi L, Camera A, Pelli A, Brossa C.
University of Torino, Italy.
"...gluten withdrawal may single-handedly reverse the abnormality...."
Gluten Linked to Schizophrenia
Kalaydjian and other researchers have noted that schizophrenia, which affects roughly 1% of the population and is considered one of the top 10 causes of disability worldwide, is also linked with gluten. "A drastic reduction, if not full remission, of schizophrenic symptoms after initiation of gluten withdrawal has been noted in a variety of studies.
Here are some blogs (some are by psych professionals) that have some interesting reading about diet alteration. One in particular talks about 'withdrawal' that occurs when toxic foods are removed.
Dr. Charles Parker: http://www.corepsychblog.com/2007/08/celiac-notes-op.html
"...The peptides from gluten [gliadorphin] and casein [casomorphin] are important because the react with opiate receptors in the brain, thus mimicking the effects of opiate drugs like heroin and morphine..."
The cerebral allergy concept depended on the assumptions of clinicians who believed that brain tissue is subject to “local Inflammation” and that this caused unusual or abnormal symptoms. The “allergens” could be proteins in foods such as alpha-gliadin in wheat, volatile gases such as fumes of toluene, certain chemicals in perfumes or cosmetics, and so on. The symptoms could be very diverse: unusual behaviors (paralleling symptoms of toxic psychosis), altered motivations (changes in hunger or sexuality), sudden emotional upsets (intense, unreasonable jealousy or inexplicable grief), etc. Any of these, along with altered perceptions and thinking, can happen. Neurons and glia function differently (“abnormally”) when disturbed by heat, pressure, pH changes and cytokine effects.
"...Sadly, many people with irritable bowel syndrome have been told they have normal exams when they may have increased mast cells in their intestines and could be offered disease directed curative therapy rather than therapy directed at reducing symptoms combined with the unhelpful “you’re going to have to learn to live with it”..."
More Docs to look up for food issue information and the symptoms that accompany it:
Countless DAN! (Defeat Autism Now) doctors easily found by using google
and many, many more are coming on line every day.
This is really just such a small example of how many ways food sensitivities can adversely affect people's lives. I will continue to spread the word because I want people to feel the same relief I have felt over the past six years.
I'm like that girlfriend who got married and now wants all her girlfriends to get married too so that they can all be blissful together. :D
For every doctor who will nay-say the possibilities, there are many, many people who will ask, "Then how come it helped me?"
I always urge people to do their own research. Consult with your own doctor. If your doctor won't help you, it could be worth finding one that will. Find a DAN! doctor or a doctor who is used to dealing with malabsorption issues.
One specific note about people already on meds. You absolutely *must* check with your doctor (or educate yourself incredibly well about the foods you'll be ingesting) before changing your diet so that you can be checked for med. alterations that may be needed.
Many people find out that their meds. need to be seriously reduced because they begin to absorb them better. That's important because once you begin absorbing better, you have the risk of o.d.ing on your meds. Also, some foods are known to adversely affect meds.
The best thing to do is to work out a diet plan that covers two weeks, take it to your doc. and make sure that the foods you'll be eating won't affect your meds. He should also be able to tell you which supplements you'll need, if any, or refer you to someone who knows, if he doesn't. If you can't find anyone to help you, look up each and every food yourself. Make absolutely sure... For example, grapefruit juice should not be consumed with certain medications (ie: blood pressure) and antibiotics deplete magnesium. Once antibiotics are finished, you may no longer require a magnesium supplement.Special note: Thankfully, there were several parents at this support group who, very quickly, voiced their displeasure at his condescending tone (and later - from his wife again) and applauded the fact that my response did not reflect this same tone. It really does not educate anyone to respond-in-kind when dealing with people who are rude/unkind.
I spent a whole night praying, over and over again:
"Please God, if you're going to take him, take him now. Please don't let his little body hurt so much for so long. Just take him quickly and let his little soul move on. I'll find a way to make peace with it!"
Needless to say, and thankfully, he pulled through and was as a newborn babe with no muscle/head control... and began life all over again.
It took him weeks after that 'virus' just to crawl again. There was a bit of time when we thought he might not be, ever, independently mobile, and were settling in to accept that as being just-a-fact-in-our-lives'.
Then we found out that almost all of his symptoms were as simple as ingesting the wrong "healthy" foods (I made only homemade wholewheat bread for my family). This, after, out of all the specialists we saw, only one suggested food (gluten) as an issue (and all the others ridiculed her theory).
I spent a long time being angry with them for 'shutting the door on her theory'. It was because I went with the 'majority rules' idiology that my son suffered for a whole, very long, extra year. So, I was angry with them and angry with myself for not being more open-minded and just trying 'diet alterations' right away when our one 'smart' doctor suggested removing gluten.
Over time, and through examining many medical abstracts and papers, I have come to understand and empathize with the medical profession a great deal more than I once could.
For example, they are often caught between two evils and their only options often are limited to a 'bad' choice or a 'worse' choice.
The more open-minded doctors are often suffocated by the less open-minded doctors (and societal "norms" as may have happened in my son's case).
They, often, are not provided with the tools they need to get the job done. (E.g. catheter supply limited, no latex free in stock so they must risk using latex catheters on patients with latex allergies, etc.)
Also, I have come to understand that a physician's training is incredibly intense but still limited in the grander scheme of things.
For example, even gastroenterologists who specialize in bacteria and parasites, do not understand the lifestyle required or illness of a celiac or person with eosinophilic esophagitis (another malabsorption issue).
And even after all of their schooling, here is their day:
Begin work at 6 a.m.
Work a full twelve hour day.
If they're lucky, they get to see their family and have *some* time with them. *Maybe* get to a recital or soccer game once in a while.
Go to the odd seminar/presentation and still feel guilty about leaving so many people with no doctor to see for that day.
Time for themselves? They might squeeze a bit in somewhere between 11pm and midnight... a couple times a week. ;)
Another issue they run into is testing. People think that if testing is negative then "I don't have it." This is almost never true but med. professionals don't have half an hour to explain this to each and every person.
So, as an example (because malabsorption is what I've researched) if you get tested for celiac or lupus or something else and come back negative, what it really means is "unknown".
In another year you could test positive. Then again, you may never test positive either because the range for "positive" is a boardroom decision. If your damage falls below that *decided* 'line' of damage, then you are deemed 'negative' and may never even be told that you do indeed have a low level of intestinal damage and that diet might heal you.
The next question is, why wouldn't a doctor tell me if I have even "minor" intestinal damage? One potential answer is because many people, who don't get clear results from a test or diet trial *right away*, won't keep it up. Therefore possibly risking the implication of more serious, longterm health decline.
Therefore, doctors have learned that if a lifestyle change is in order for people, they don't want to do it (for the most part) unless they absolutely have to. So prescribing diet before end-stage damage of the intestine occurs (and sometimes semi/permanent damage), is often useless and has the potential for further, long term, potentially more serious damage because the patient doesn't take their 'illness' seriously enough to be as strict as they need to be with their diet.
Doctors have learned that (the majority of time) people are better about taking a pill than they are about 'managing their own health'. There are papers and papers and papers written on this very subject. The difficulty of getting patients to conform to a special diet is confounding to many a physician.
In my own case, the one doctor kept saying 'wheat' for a year before I decided to do a total elimination diet for my family (so she couldn't switch to a different food group later ;) ). And honestly, if we had only removed 'wheat', we may very well not have seen very clear results because there were several foods involved in his demise at the beginning.
Why didn't the other doctors (some of who probably did suspect it might be food) back her up? Perhaps because they thought I wasn't ready to take the suggestion seriously enough to comply with a strict diet for my child, therefore potential putting the longterm health of the child at greater risk. (Again, they are stuck in the position of choosing the lesser of two evils.)
They had no way of knowing that I am often a black and white freak of nature... The moment I realized gluten was a major offender, a sticker went on our front door (like a smoke free house sticker)and it wasn't even allowed in the house. This was how we found out (completely by mistake, obviously) that even our other 'normal' child, had better bone growth without gluten or cow dairy... which is a story in and of itself... But I digress (as usual)...
When we did our total elimination diet, I took my chances because I couldn't find anyone to help us. I made a lot of mistakes and had to make a lot of corrections and do a lot of learning.
We went to naturopaths and wholistic professionals who also gave us great hints and tests that were sometimes accurate and sometimes questionable, about what to do. They also gave us information that was even potentially harmful (side-effects which are always a risk in all treatments).
In the end I decided that the least harmful choice was diet alternation... and I developed a total elimination diet for my family that was followed by a fairly strict rotation diet (that was changed and changed again and changed again - you get the picture).
Our pediatrician was thrilled with our results (no dispute, his growth chart showed unbelievable improvements in bone growth - a year's worth in sixteen weeks). - Nevermind the vast improvements in countless other areas like mood stability, clinginess, seizure/breathing issues, glue ear, viral susceptability, gastro. issues, ability to focus - or unfocus, quality of life, joint rotation, sociability, eye contact, etc.).
She later asked me many, many questions about what I did, how I decided upon what I was going to do, how I identified my mistakes and how I decided upon the alterations that were required. I began to write papers that she requested permission to pass on for others who required a dietary lifestyle change and couldn't find anyone to help guide them.
Why was she so full of questions? Because this kind of thing isn't in their training. So, even though they know something outside of western medicine is a possibility, they often don't know how to pursue the option. They don't know how to instruct re: this type of lifestyle change.
What's part of the issue? They have no extra time for researching their own family's health issues... nevermind researching someone else's. They rely on what they learned in school because they have to. That's their job. Mostly, they do it the best way they know how. But if your answer wasn't in their textbooks, then you've got to do your own research.
You must be your own advocate of health.
No one system is perfect and there is no one who can examine them all for you - except yourself... and even then you just hope you're lucky enough to pick the right "road" sooner - rather than later.
"Medicine" (Western, et al) has a lot of great things to offer but in many cases is, really, only one aspect of treatment and that's precisely where it falls short. All medicine is also is geared to the 'average'... and as homeschoolers, we are all aware of what 'schooling to the average' means... Yet again, I digress... Sorry about that...
Depression is an excellent example. Anti-depressants save people's lives. There's absolutely no question about it. They are needed, required and a miracle drug (set)!
The gap in treatment is in finding the 'cause' of depression and after-therapy. In many instances, I have come to learn that 'good' foods are more than capable of altering brain chemistry in a bad way. Western medicine (largely) does not acknowledge this fact.
What usually happens (in western medicine) is a person is either put on a lifetime of pills - or weaned off eventually - but not placed into any type of 'lifestyle change' treatment. So they go right back to living the life that allowed their brain chemistry to falter.
Also, diet is only one aspect of altering brain chemistry. There are many studies that have been done for many years showing that brain chemistry is altered not just by eliminating toxic foods but by transcendental meditation (yoga, praying, running, Aikido, etc.). GABA and serotonin (happy hormones - oversimplified) are both shown to be altered (in a positive way) by this type of activity.
Presently, there is no 'brainiotherapy' for people who suffer depression, the way there is 'physiotherapy' for people with bone or muscle injuries.
Imagine if you broke tore a muscle, they gave you pain meds to dull the pain and sent you on your way. Would that muscle would ever reach it's maximum healed potential without daily stretching exercises and physical manipulation to push it to it's limits? Would it always require a little 'extra attention' every day to stay in top form? Maybe. If part of it's demise was that it was chemically toxified, would you need to identify that toxin and remove it or risk further damage? Of course.
As many know, physiotherapy often helps to train people to a 'new way of life' to help them avoid future injury. We need the same thing for people who suffer depression and migraines, etc.
In our family, transcendental meditation has played a significant role in our 'brainiotherapy'. :D
I discovered it completely by mistake... and it (yoga - in our case - which I chose to help with behaviour control/modification) helped our situation to a far greater degree than I had ever anticipated.
So, I began to research whether we were oddities of nature or if western medicine was even playing with 'brain training'. It turns out that there are many papers (newer ones have photos of brains with different chemistry too) and the knowledge has been there for many, many years... but no big money... no big message push.
(As always I have backup material and will try to add it later as I've presently run out of writing time with my verbosity... a Pubmed membership is free... so do go if you can't wait...)
These things (about food and meditation and the brain) have been known since the WWI and WWII (and even before) but in this age of "whoever-pays-the-most-gets-the-most-advertising", it's the big pharmaceuticals who are going to get big payback and who get the 'big push'.
No one is funding diet alterations or transcendental meditation because money could actually be lost by some food boards and lawsuits could follow (think Oprah and beef). And there's just not the same amount of money to be made as in a little miracle pill.
And so who is funding the 'information updates/seminars/etc.' that our doctors are going to?... One guess.
So some of your answers may lie within western medicine. However, if part of your answer lies outside of western medicine, the only person who will be able to pursue that possibility is you.
Western doctors/nurses/med. professionals are just too busy with the vast amount of knowledge that they are already struggling to hold on to (expand upon) and their day jobs (and too many patients for any one person to see in any one day).
(This same thing applies to Wholistic Practitioners, Chiropractors, etc. No one can have all the answers.)
Don't accept a mediocre life... expect an excellent one!
Friday, 9 November 2007
For me, the only reaction I've been able to confirm is completely mood/behaviourally oriented.
I get really *itchy. Putting it nicely, my patience becomes almost zero.
I became really aware of this last year when I decided to try supplementing my selenium to see if I felt any benefits. (I live in an area where the soil is selenium deficient. Even my organic farmer finds the need to supplement it with her animals sometimes.)
Well, I supplemented for three days. One day, each week, for three weeks. Boy! Everyone in the house sufferred. By the third week I stated that I would be trying the selenium again and everyone could have the day off in case I got the same negative reactions - which I did.
For the longest time I couldn't figure out what it was. So, I put the bottle of selenium in the cupboard and forgot about supplementing it until I could figure out what the issue was.
Then I ate some yeast bread (which I don't normally do) and reacted the same way. "Wow, this is just like the selenium," I thought. "I really need to get on looking up some more information about selenium." And so with a quick google, I found out that some selenium is yeast based.
I ran to get my bottle, blew off the cobwebs and, sure enough, it was yeast derived.
I have since picked up some non-yeast based selenium and tried it for three weeks in a row. I did not have any negative reaction at all. So is it a yeast issue? A scientist might say that I cannot say that for sure. However, I don't think it's a stretch to say it *could* be.
It's fine by me. As the fairly-yeast-free-years have passed, I find that the odd occassion upon which I do make a yeast bread, I find the smell of the yeast a bit nauseating. Still, once in a while, there's nothing like a nice piece of yeast bread (sliced very thinly, as I no longer care for a large mouthful of grain either) with some avocado, sea salt (tomato and goat feta if I'm really splurging - like at Christmas time).