Saturday, 10 November 2007

Trashed 1!!... by a teaching psychiatrist

So, here's number one. Not the first time. Definitely not the last. But it's a pretty good 'put-me-in-my-place' kind of treatment from a, certain-type-of (see Trashed!! reference to Mary Shomon's article), medical professional that I've experienced and heard other people experiencing themselves, in the past (Forgive me, I'll have to come back and make it pretty at a later date):

Here's my first response to an inquiry about SCD:

SCD is an acronym for the Specific Carbohydrate Diet. It limits all complex sugars to starve out gut bacteria so that a better 'flora' can be established.

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.

hth
Kind regards,
KimS

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 best available evidence regarding effective treatments (including
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.Org" (google)

Cheers,

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

Oh boy, well I understand that some people don't believe it. I didn't believe it myself... until I saw my own son's miraculous recovery based only on withdrawal of foods to which he was sensitive to... after 3 years of hospital visits and somewhere around 20 specialists who were left scratching their heads. We expected no results actually... just wanted to cross the possibility off the list... Well, in four days we had a brand new, happy, life-is-fabulous child!

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
"In one study of 116 children with ADHD, 95% were magnesium deficient... Those who received magnesium demonstrated a signmificant improvement in behaviour...those who recieved only standard therapy without magnesium exhibited worsening behaviour..."

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.
http://neurotalk.psychcentral.com/ (run by a psychiatrist - check the gluten sensitivity section)

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
...help people with psoriasis determine whether gluten or other foods are contributing to their skin condition...

...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....

http://www.biomedcentral.com/1471-244X/5/14

(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.)

Research article

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


http://jnnp.bmj.com/cgi/content/abstract/74/9/1221

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

Correspondence to:
Dr M Hadjivassiliou, Department of Clinical Neurology, The Royal Hallamshire Hospital, Glossop Road, Sheffield S10 2JF, UK;
m.hadjivassiliou@...

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...."

------------------------------------

http://neurologicalillness.suite101.com/article.cfm/happiness_with_gluten_elimination

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.

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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..."

Dr. Kaslow: http://www.drkaslow.com/html/gluten-brain_connection_.html

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.

Dr. Scot Lewey: http://thefooddoc.blogspot.com/2007/07/acid-reflux-or-allergic-esophagus-is.html

"...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

Ron Hogan

Rodney Ford

Peter Greene

Kenneth Fine

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.

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