January 24, 2016
2015 has been a busy year and I just realised that I never posted this wonderful article from April 2015 on my blog. It's written by Ellen de Visser who did an awesome job. It was published in 'de Volkskrant', a national newspaper with 335,000 papers printed on a Saturday, reaching around one million readers.
This is Jaap. He has CF.
This is a sort of super apple-sauce, that seems to support
his health.
Underneath article photo: Eight year old Jaap has CF. He
eats a few teaspoons of supersauce 4 times a day, which contains his enzymes
and two food supplements, from soy beans and Turmeric.
Article:
Food can cause disease, but can it cure disease? It’s not
just quacks anymore that say that. There has been some intriguing research done
lately.
Jaap Schut is 8 years old, he suffers from the life
threatening disease Cystic Fibrosis (CF) but has, like his mother says, the
appearance of a ‘block of concrete’. Big, strong, a little on the heavy side
and so healthy that the radiologist once asked the pulmonologist if Jaap really
had CF. He never coughs, barely ever uses antibiotics and the scans show no
damage to the lungs.
Jaap’s secret is the supersauce. Four times a day he eats a
few teaspoons of bright orange applesauce with enzymes and 2 food supplements:
Genistein (from soy) and Curcumin (from Turmeric). His mother Samantha
discovered the value of the two compounds after lots of searching on the internet
and thought: let’s give it a try.
Four years after Jaap’s diagnosis, Samantha Schut had a
meeting at Rotterdam’s Erasmus University Medical Centre with biochemist Hugo
de Jonge, specialized in CF research. There was a new medication on the market
for a small group of patients with a certain mutation (G551D only at that time;
Sam) and de Jonge wanted to see if the medication would also work for Jaap. Out
of curiosity he also tested Curcumin and Genistein on Jaap’s intestinal cells.
He remembers how he stared at the results in surprise : the medication worked,
but the combination of the two
food supplements worked almost as well.
In the Utrecht Children’s Hospital, de Jonge grew organoids
from Jaap’s intestinal cells, and from other patients with the same mutation. A
microscopic test confirmed the effect of the food supplements. After meeting
with CF doctors from around the country, he decided to do a special clinical
trial: Jaap’s supersauce was going on a ‘sleep over’. Twenty patients would test the effects for 8 weeks. The
first results are expected this month. (I heard it’ll be more like 2 or 3
months; Sam).
Getting defective cells to work again with soy beans and
Turmeric – it sounds unbelievable. That we can eat ourselves sick, is clear: we
eat too much fat, too much sugar and most of all too much in general and with
that we increase the risk of cancer, heart disease, and diabetes. But the idea that,
once sick, we can eat ourselves back to health, is, at the very least, dubious.
The area of food guru’s and quack thinkers that claim a diet with little
saturated fat can cure MS and that Acai berries fight cancer.
Ask the food experts and they immediately jump on the break
pedal: food, they warn, is not medicine. JP, professor of food physiology:
“Eating healthy is very important, to prevent disease. Enough calcium prevents
brittle bones, but once your bones are brittle, calcium won’t help anymore”. RW,
professor of food and pharmacology: “Food is maintenance, not repair. You can
prevent diabetes and heart disease with it, but cure arthritis or cancer? Come
on! There is no alternative in food for chemo-therapy.”
Biochemist Hugo de Jonge realizes he is on thin ice with his
supersauce trial. “You have to be careful not to be pushed into the corner of
alternative medicine” he says. About the therapeutic effects of food he keeps
hearing the same thing: it’s not proven, so it’s not true. But with that line
of thought he places big question marks. “Without scientific evidence indeed
you may not claim such an effect, but at the same time you can’t say there
isn’t any effect either.”
And there are more doctors, for whom experiences of individual patients are the start of
intriguing research.
In Rotterdam, pediatric neurologist CC is researching the
effect of a ketogenic diet (hardly
any carbohydrates, lot of fats) on a specific kind of brain tumor, in another
study, professor HP is researching if type 2 diabetes can disappear with a
change in food pattern.
“The danger is that a certain cynicism will arise about the
healing properties of food. Food can’t cure cancer, but can contribute to the
treatment of the disease.” “It’s about time that there is more attention for the
supportive role of food.” Says CC. “The combination of diet and cancer was a
sensitive issue for a long time. But I see more and more doctors thinking:
“maybe there is something there?”
In his Rotterdam lab, Hugo de Jonge has seen with his own
eyes what Genistein and Curcumin can pull off in the cells of CF patients. Cells
that produce mucus have gates in the cell membrane that regulate transport of
water and salt, but those don’t function properly in CF causing sticky mucus to
accumulate. The two food supplements bind to the protein that creates the gate,
and open it. “One pushes, the other pulls. They enhance each other strongly”.
Jaap has the S1251N mutation that only occurs in 33 patients
in The Netherlands, and for this specific group, the new medication will be available
soon. It’s a medication that repairs the gates in the cells in such a way that the
health of patients greatly improves. It offers de Jonge an opportunity to
compare a few scenario’s: first the effect of the two supplements, followed by
the effect of just the medication, and finally the effect of the medication
plus genistein. The Utrecht organoid research predicts that the combination of
the medication with the food supplement improves results even further. Of
course all parents want the new medication for their children, says Samantha
Schut. So does she. But if it turns out that the food supplements work just as
well as the medication and interesting dilemma arises: the medication costs
over 200,000 Euros per patient per year, Jaap’s supersauce about 3,000 Euros.
What about scurvy?
Already in the 18th century sick sailors
recovered in a few days from the subcutaneous bleeding when they ate citrus fruits.
Isn’t that a wonderful example of food-on-prescription? Or celiac disease, that
can be tackled with a gluten free diet. Also a form of therapeutic eating,
isn’t it?
Well, no, says professor P: if your body has a nutrient
deficiency and you supplement the deficiency, or if you’re intolerant to
certain foods and don’t eat those and your symptoms disappear, you can’t talk
about medicinal foods. You’re only solving the problem created by food.
Food is almost never a real cure, say the food experts.
Constipation can disappear with prunes, acid reflux with milk, pregnancy
related nausea with ginger, but that’s as far as it goes. The big difference
between food and medicine is the binding site, says P (the nutritional
physiologist). Medication is designed in a way that a certain enzyme is
activated or de-activated, or a certain receptor is blocked because of which
you’ll see strong effects. But food exists of hundreds of compounds that, if
they have any influence on our bodies at all, are usually minimal: they’ll
minimally inhibit a few enzymes, they’ll carefully block a receptor. The total
effect of all those compounds together is essential for maintaining good
health, says P, but the influence of each individual compound is hard to prove.
It’s clear why the number of health claims allowed for food
supplements is very small. The claim that beta-glucan in oatmeal lowers LDL-cholesterol
is allowed, and so is the positive effect of cocoa on blood vessels and calcium
on bones. Practically all approved claims are preventive, the can prevent
disease related symptoms. A very strong food-medicine is not among them.
But that cautious message is difficult to bring across,
sighs professor P. Together with his food expert colleagues he spends more and
more time debunking the myths. “There seems to be a new hype every week.” Lots
of examples at the National Health Convention that was recently held in
Utrecht. From wheat grass that is supposed to cleanse the liver and blood, to
magnesium against hart palpitations and depression, the visitor was advised on
lots of ailments. And all product were “proven effective”. “Those scientists
say something different every week, you shouldn’t mind them”, says one of the
sales people.
In his book So What’s
Healthy? Professor of nutritional science MK, describes it as follows: “Ask
people what healthy food is and 99 out of a hundred will give you a strong and
clear answer. The one that doesn’t know, is the food scientist. Why is he so
reserved? Because his area of expertise is a difficult form of science. Apples
are healthy and so are nuts, but do apple eaters perhaps also consume more
broccoli? Do the nut eaters go to the gym more often? Which compound in the
apple is it? In patients with disease it’s even harder to prove efficacy
because they often take medications at the same time, what role plays the food
and what role the medication?
When EK, professor in oncology and nutrition, started a
website a year ago, with a group of experts about the role of food in cancer,
soon after, hundreds of questions were asked. It’s hard work to sort everything out, she says. Nowhere on
the website does it say Acai berries don’t work or that raw milk and green tea
are nonsense. We write that there is no evidence or not enough research to
support the use.
So is Hugo de Jonge right after all? Can food have medicinal
properties, but is the difficulty in proving it? Almost all top 10
medications have their origin in
nature, says RW, professor of nutrition and pharmaceuticals. The prototype of
statins (cholesterol lowering medications) originates from red rice, and aspirin
is a chemical copy of a compound from a Willow tree. “The medication is no
longer food. In aspirin there is so much of the active ingredient, you’d have
to eat willow bark the entire day to get rid of your headache. But there is a
transition somewhere between food and pharmaceuticals.”
It sounds logical to treat intestinal disease with food
especially, says RW. The intestines are after all the place where food is
absorbed. But after decades of research there is still no medicinal diet
discovered. It is far from unthinkable, says RW’s colleague SK, professor of
molecular nutritional science, that certain food compounds could heal or cure,
but scientists can’t prove it. “I’m not afraid to say that food can be
medicine”, says biochemist PV, physiologist at the University of Cambridge,
“but it is very difficult to find out”.
Many organs and millions of cells interact daily with
thousands of food compounds that we ingest, says PV, but how that subtle play
takes place is only known for a very small part. On top of that each body is unique: the sensitivity for each
food compound is determined genetically and because of that each individual may
react differently to exactly the same food.
But scientists can’t work with those inter-individual
differences, they research a large group and calculate the average. PV: “this
reduces the effect of the compound often to almost zero, and that is, I think,
wrong.”
Professor EK often hears from cancer patients that are
enthusiastic about a food supplement: “It works for me”. Possible, she says.
Don’t we all know a 90 year old heavy smoker that didn’t get lung cancer? Maybe
it works the other way around as well.”
But professor RW and SK put it matter of factly: if science
can’t prove the efficacy of food, it all stops there. Without proof, anyone can
claim anything. The American critic and epidemiologist John Ioannidis wrote, a year
and a half ago, in the British Medical Journal that, by now, practically every
food compound has been researched and connected to every imaginable result. End
of 2013 he counted 34 thousand research articles about caffeine and 13 thousand
about soy. Literature of epidemic proportions, he concluded, of which many
outcomes are ‘totally unbelievable’.
So it doesn’t matter what you eat when you are sick? Does a
sick person benefit just as much from McDonald’s as from a good portion of
fruits and vegetables? Food can never replace a prescription, says EK, and
definitely not in cancer, her area of expertise. “Cancer needs heavy artillery,
food can’t equal that.” But that doesn’t mean that food patterns have no
influence at all, she emphasizes. Food plays a supporting role and sometimes an
important one. More and more research shows that food can enhance the effects
of medications, or work against them.
This month a Dutch study showed that fish-oil inhibits the
effects of chemo therapy. On the other hand it is becoming clear that fatty
meals enhance chemo therapy. With a few types of cancer healthy eating improves
prognosis. “Our body has a delicate system that can repair tissue damage”, says
diabetes expert HP, “and the necessary building blocks for that system all come
from our food. Healthy food doesn’t cure disease, but enables our repair
systems to clear up damage as efficiently as possible.
The Rotterdam supersauce research project got lucky: there
is a rare and very clear effect and there is funding. ZonMw and the Dutch CF Foundation pay for the research which
is absolutely necessary, says de Jonge, because the pharmaceutical companies
weren’t interested. Turmeric and soy beans can of course not be patented.
Clinical trials are very expensive, he explains. Would he be able to show
results, then an international larger trial, with more patients, would be
logical. To gather strong evidence, such a phase 3 trial is necessary. But
millions of Euros would be needed. De Jonge realizes that he won’t get those:
“We have to keep our ambitions small.”
Last year Jaap underwent a repeat sweat test. A sweat test
provides irrefutable evidence, he explains. The results show how well the gates
in the cells function. “The saltier the sweat, the more severe the disease. You
can’t simulate that.” Six years after Jaap started his supersauce his sweat
test number has lowered from 118mmol/L to 59mmol/L. With that, his diagnosis
changed from severe CF to mild CF and so did his life expectancy. The disease
for him is no longer life threatening, his life expectancy is probably normal.
Three years ago the Curcumin manufacturer changed its
packaging and by accident his mother ordered the wrong type. For Curcumin to be
absorbed by the intestine it needs to be combined with black pepper and without
that extra pepper Jaap’s health deteriorated quickly. Samantha Schut doesn’t
need more proof. She is nervous, now that the trial results are expected soon,
but she realizes: even if the trial doesn’t show efficacy, she won’t change
anything for her son. For Jaap the supersauce works.
Photographer at our house
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