[Research] Gluten Discovery

[RobinN]

A YOUNG researcher is sending rumbles through the world of gastroenterology.

Jessica Biesiekierski has spent months behind a microscope in the Box Hill Hospital researching the impact of gluten on people without coeliac disease.

Ms Biesiekierski said previously there was no testing to see if gluten caused stomach pain, bloating or other intestinal symptoms in people who did not have coeliac disease.

“But there was a strong community opinion that it does,” Ms Biesiekierski said.

Those murmurings have proven correct.

Ms Biesiekierski put 34 people without coeliac disease on either gluten or gluten-free diets. Neither the participants nor the researcher knew which diet a person was on.

She found that the people with gluten in their diet complained of stomach pains and other symptoms while those without gluten did not.

For her research Ms Biesiekierski won the prestigious 2009 Australian Gastroenterology Douglas Piper Young Investigator Award.

“The award was a validation into the work we were doing,” she said.

“I have grown so close to the study group, and to know I will be able to help them is incredibly rewarding.”

Ms Biesiekierski is in her first year of a Monash University PhD and this was her first completed study.

The 23-year-old researcher has presented her paper to numerous professional bodies filled with crowds of eminent and, at times, sceptical gastroenterology researchers.

“Some of the more experienced doctors have been told all their careers that gluten causes stomach pain only in people with coeliac disease and then they are confronted with the young blonde thing telling them otherwise,” Ms Biesiekierski said.

http://oakleigh-monash-leader.whereilive.com.au/news/story/jessica-applauded-for-coeliac-discovery/

 

[Nakamova]

This is so interesting Robin! Another reason to try a gluten-free diet.

 

[batman]

With me being on what I'm calling a "semi-gluten free diet", the strength and frequency of my seizures have decreased. I'd be willing to inform some of my previous neurologist about this, but that would make those doctors look bad.

I repeatedly told my previous doctors that my seizures occur roughly 6 hours after I've eaten. I told those doctors that before my seizures take place, I can feel various amounts of pressure that has built up in the lower right-hand area of my abdomen. At some point in time, I can hear and feel that pressure quickly released and wham........seizures. Then later on, mother nature calls. Something is taking place either in my intestinal tract, around my intestinal tract, or both in and around my intestinal track.

Back then, I skipped meals on purpose; I ate later than usual, on purpose; I kept track of, and still keep track of, what and when I ate, and when my seizures took place. I did all this with the help of keeping what's called a "seizure diary" or "seizure journal". Doing this, was how I notice a pattern of my seizures occurring roughly 6 hours after I had eaten. Anyway, I kept telling my previous neurologists what I've said here, and they just continued to disagree, saying that what I was feeling was all in my head. Talking to my previous doctors was about as useful as talking to a wall. But hey, I was dealing with professional neurologists. I've even seen the name in bold lettering of one of my past neurologists, on multiple websites. Again, I'd be willing to tell my previous neurologists about my recent discovery of gluten being a definite trigger of my seizures, but that would make those neurologist look un-professional. And we as patients, cannot do things like this to our doctors.

 

[RobinN]

Maybe we could put together a packet of information to take to doctors. Information that has been recognized in the conventional medical community.
Doctors have to be aware that there is always new evidence especially with like minded people coming together on the internet. I have read somewhere that they appreciate that we share research, and experiences.
If it is done in a sensitive manner, and not point fingers at unprofessional behavior, I do believe we might get some attention.

BTW Bruce, that is great that you are seeing results to your experiments. I wish it were that easy for everyone.

 

[Bernard]

Awesome research Robin. Thanks for posting. Hopefully this will open the door to more research in this area. Did you notify Dogtor J about this study?

... I repeatedly told my previous doctors that my seizures occur roughly 6 hours after I've eaten. ...

Keeping a seizure diary/journal really helps one see patterns like this. I'm glad you are experiencing less seizures with a change in diet Bruce! It seems like such a simple thing, but it can have such a profound effect.

 

[RobinN]

I just posted it on his FB page. Thanks for the suggestion.

 

[DogtorJ]

Good news, "bad news"

Great find, Robin. Thanks for sending the link to me.

Now for the good news/bad news: I have discovered something amazing in my own life and am going to be writing much more about it in the near future. It was great for me but "bad news" for the masses-

*** I am now 100% certain that I was being glutenized by chicken. ***

My wife does not eat any beef so we have been eating a lot of chicken, like most people in this country. But I was noticing a precipitous drop in my energy levels over the last 6 months or so after eating chicken. It occurred 30-45 minutes after eating and I was actually passing out at times, just like I did when eating gluten and dairy.

So, my wife was out of town for over a month and I decided to take that opportunity to eliminate chicken from my diet. Incredible!!! I have not had any of the post-meal depression and as the days went on, my daytime moods were amazingly stable and even my sleeping improved. After 1.5 months of this, I have reached a level of mental clarity and energy that I never thought possible.

I will be writing an article for the Website soon but will also cover this in my upcoming book. I will discuss the difference in digestive systems between ruminants I(cattle) and simple-stomached animals like dogs, cats, humans, horses and chickens. It is clear that the lectins of gluten enter the flesh of all who ingest it (that's how it does it's harm) but when commercial chickens are fed this high wheat, corn, and soy mixture that they get (watch the new movie "Food, Inc." Errrrrhh!!!), their flesh is stuffed with these lectins. Cattle are also affected but to a much lesser degree.

I have now reached a level of consistent energy and mental clarity that I can tell within minutes of eating something wrong. That's how I identified the corn in hashbrowns and the wheat in the Bert's chili at Waffle House. My energy levels dropped within minutes.

Researchers now think that 1:3 people are negatively affected by gluten, with 1:30 having full "celiac disease", a term's meaning that is morphing as we speak. I contend that if people reached the level that I have now achieved by strict adherence to the diet, that they too could feel this energy drop when they eat gluten, dairy (A1 milk products), soy or corn whether they have been shown to be intolerant of it or not. I believe these four foods are not "good" for anyone, just better tolerated by some than others.

Turns out, we don't need a bunch of fancy, expensive lab tests, many of which produce false negatives. We just need to listen to our body and eat accordingly. BUT, if you are intolerant of gluten, dairy and corn and only stop eating gluten, you may not feel the difference as dramatically as I do now. But if people eliminate more of the "big 4" at one time and then add them back one at a time, they may see the truth very quickly.

I am convinced that poultry will be proven to be a major source of gluten to those who just can't get better or reach the goals they have set on the gluten-free diet. In the meantime, listen to your body. It is NOT normal to get sleepy after eating. Food should be energizing, not sleep-provoking. I now eat huge meals and feel no energy drop, even at night.

I am still totally amazed at what this diet has done for me, even though I know it like the back of my hand now. The medical miracles that are resulting from the employment of this diet (GFCFSFCF) are astounding. Throw in a few supplements- D3, omegas, magnesium, selenium, B complex, grape seed extract (antioxidant)- and the sky's the limit.

Onward and upward!
John

 

[Molly97]

Ok, I'll add in here, Dogtor J. What about the eggs of said chickens? You know, the ones in the carton that proclaim that the chickens were free ranging, dining on grain/corn. Those eggs would affect us too, wouldn't they?

So, what kind of meat/protein source are we supposed to be able to safely consume?

 

[DogtorJ]

Fortunately, there is no medical evidence that I have been able to find that eggs contain gluten. To sorta back that up, I eat three eggs every morning and feel great afterwards...no energy level drop at all. I'll have to go back and review my egg formation but there appears to be something protective about the process. But I would not be surprised to find out differently down the road because it is quite clear that the the feeding practices of chickens do affect their egg quality. For instance, I would LOVE to see the data on the omega three claims by these popular egg producers who feed vegetarian formulas. They claim higher omega three content when, in fact, it has been shown that grain-feeding chickens (who are omnivores) reduces the omega three content of their eggs by a factor of 9. So, I would seek out free range, range-fed chickens as the source of eggs.

As for meats, the best source to me would be organic "cattle"- beef, lamb, buffalo and venison. The problem with beef is not that red meat in unhealthy for humans but that it has been tainted with man-made drugs and hormones. Beef provides all that we need in the way of protein (essential amino acids), B12, and important saturated fats (which are necessary in our diet, despite the crazy low fat/non-fat mentality we see these days). Our brain NEEDS fat and our body NEEDS cholesterol. All of our hormones are made from cholesterol and this anti-cholesterol thing (e.g. don't eat too many eggs) is incorrect.

So, I eat lots of eggs- the only reason not to being significant egg allergy, which is secondary to the leaky gut caused by the "big 4". I also eat a lot of beef. I am looking into getting organic buffalo/bison and lamb on line. These are what the Israelites ate and they were some of the strongest people to walk the planet. Plus, they ate lots of grapes olives, dates, figs, and pomegranates- 5 of the 7 "sacred foods". We ruined the other two- wheat and barley.

Hope this helps,
John

 

[Kansas Educator]

So does this mean that even free-range organic chickens are off limits?

 

[DogtorJ]

Free range vs range fed

So does this mean that even free-range organic chickens are off limits?

Not if they are TRULY and exclusively "range fed", which means they live off the land and are not stuffed with wheat, corn and soy. But these are hard to find and quite expensive in my experience.

To clarify (see link below):

"Organic" means no unnatural substances given/added (e.g. antibiotics, pesticides).

"Cage free" or "free range" means they are not confined in cages and are allowed to roam the pasture or farm.

"Range fed" means they are allowed to graze freely, eating off the land, doing what chickens do- eating bugs, lizards, seeds, small mammals, and even each other sometimes. They are pretty much omnivorous.

Are some "free range" chickens fed grains (e.g. wheat, corn) and now soy. Yes. Are some "range-fed" chickens fed these grains. Most likely, kinda like grain-finishing beef.

I think, when it comes right down to it, you would have to ask the producer directly whether or not they get grains. This will likely become a bigger issue once other celiacs experience this effect as they get healthier and eliminate other things, like dairy, soy and corn. But the amount of grains they get may differ greatly when range fed, which could explain why my reaction to chicken has been variable over the years. Some flat-out knock me out while others just cause my energy level to drop notably.

http://www.backyardchickens.com/LC-glossary.html

I will be looking for some healthier sources of "yard bird" for my wife. I'll let you know what I find.

 

[Bernard]

.. So, what kind of meat/protein source are we supposed to be able to safely consume?

Wild Alaskan Salmon is among the safest of the sea foods (as far as mercury concerns go).

 

[Shelley]

I, too, was eating chicken because of all the problems with beef.
I guess I'll go back to beef. I'll try the organic beef ASAP.

 

[Kansas Educator]

I have managed to find free range chickens in Kansas -- at least I think you would define them so. We have a lot of coyotes and other animals that eat chickens so it's hard to turn them loose without losing a lot of your chickens. A creative innovative rancher I know has developed a system of large wire rolling cages that he keeps his chickens in. The wheels on the cages fold down so the cages are flat against the ground and he moves the cages from place to place every day or two. That way the chickens are safe but also "free range." I also buy eggs from him. Yes, it is more expensive but worth it to me.
I also buy hormone-free, antibiotic-free 100% grass fed beef for my freezer and a lot of buffalo. It's hard to find fresh organic fruits and veggies here but meat, we have in Kansas!

 

[RobinN]

It has long been accepted that neurological disease can result as a complication of Celiac Disease, due to nutritional deficiency caused by malabsorption.

What is NEW information is that neurological and neuromuscular disease may also be associated with a non-celiac gluten sensitivity, and may involve a direct immunological assault of brain, nerve, and muscle tissue.

This can occur without any signs of intestinal damage, which is the cornerstone for a diagnosis of Celiac Disease. Sometimes, intestinal disease will follow several years later. It is possible that neurological disease is the sole manifestation of gluten sensitivity.

The research regarding gluten sensitivity outside of Celiac Disease is ongoing, and therefore your doctors may be hesitant to acknowledge or accept it. In fact, they may not even know about it.

However, because diagnostic testing is available, and treatment is safe in the form of dietary changes, I don't understand why our neurologists are reluctant to explore this possibility of gluten sensitivity, and let patients know there is at least a chance they might be helped by diet. Neurological disease within the scope of Celiac Disease is indisputable.

http://jccglutenfree.googlepages.com/theneurologicalmanifestationsofgluten

 

[DogtorJ]

Gotta love JCC (Cara). She's always on top of things!

Not surprisingly, authorities are now finding that many of those who test negative are actually the most afflicted by gluten. The explanation is simple: Antibodies (which are what are tested for in most cases) are part of the SOLUTION, not part of the problem. We tend to go "Oh no!" when we get a positive antibody test back. Granted, this can sometimes mean that we are seriously ill with something but in the case of celiac disease and other members of the "big 4" (gluten, dairy, soy and corn), it means that we are forming antibodies to NEUTRALIZE the threat they pose. Antibodies attach to foreign invaders and keep them from doing harm. So, the more you form, the less harm the invaders will do. SO, those who test negative may not need to form antibodies because they are not bothered by these things (the classic interpretation of the test) OR they are forming antibodies when they really need to be, which is a horrible thing. In other words, these individuals are not responding appropriately to the threat and will ultimately be overwhelmed by the invaders. They are finding this to be much more common than previously thought.

I am convinced that gluten and the other "horsemen" are not "good" for anyone, they are simply better tolerated by some than others. there is nothing we derive from them that cannot be gotten from multiple other sources that are much safer and healthier for us and our pets.

STILL, the best way to know whether these foods are bothering you is to stop consuming them and see what happens. Then, see how you feel when you reintroduce them. Pay close attention to your energy level within the hour of eating them. Sadly, a single dose of gluten can affect a celiac for 4 days so the reaction can take time to really get a hold of you. But most will feel that drop in energy/concentration after an hour...unless they cover it up completely with caffeine. Gotta love Red Bull for covering up food reactions.

J.

 

[RobinN]

Helpful diagrams:

http://glutensensitivity.net/VojdaniDiagrams.htm#GS

 

[RobinN]

We also just had a post by a new member with some interesting research:

http://www.coping-with-epilepsy.com/forums/f20/greetings-8261/#post81728

 

[RobinN]

A recent large study in the Journal of the American Medical Association found that people with diagnosed, undiagnosed, and "latent" celiac disease or gluten sensitivity had a higher risk of death, mostly from heart disease and cancer. (i)

This study looked at almost 30,00 patients from 1969 to 2008 and examined deaths in three groups: Those with full-blown celiac disease, those with inflammation of their intestine but not full-blown celiac disease, and those with latent celiac disease or gluten sensitivity (elevated gluten antibodies but negative intestinal biopsy).

The findings were dramatic. There was a 39 percent increased risk of death in those with celiac disease, 72 percent increased risk in those with gut inflammation related to gluten, and 35 percent increased risk in those with gluten sensitivity but no celiac disease.

This is ground-breaking research that proves you don't have to have full-blown celiac disease with a positive intestinal biopsy (which is what conventional thinking tells us) to have serious health problems and complications--even death--from eating gluten.

Yet an estimated 99 percent of people who have a problem with eating gluten don't even know it. They ascribe their ill health or symptoms to something else--not gluten sensitivity, which is 100 percent curable.

And here's some more shocking news ...

Another study comparing the blood of 10,000 people from 50 years ago to 10,000 people today found that the incidences of full-blown celiac disease increased by 400 percent (elevated TTG antibodies) during that time period. (ii) If we saw a 400 percent increase in heart disease or cancer, this would be headline news. But we hear almost nothing about this. I will explain why I think that increase has occurred in a moment. First, let's explore the economic cost of this hidden epidemic.

Undiagnosed gluten problems cost the American healthcare system oodles of money. Dr. Peter Green, Professor of Clinical Medicine for the College of Physicians and Surgeons at Columbia University studied all 10 million subscribers to CIGNA and found those who were correctly diagnosed with celiac disease used fewer medical services and reduced their healthcare costs by more than 30 perecnt. (iii) The problem is that only one percent of those with the problem were actually diagnosed. That means 99 percent are walking around suffering without knowing it, costing the healthcare system millions of dollars.

And it's not just a few who suffer, but millions. Far more people have gluten sensitivity than you think--especially those who are chronically ill. The most serious form of allergy to gluten, celiac disease, affects one in 100 people, or three million Americans, most of who don't know they have it. But milder forms of gluten sensitivity are even more common and may affect up to one-third of the American population.

Why haven't you heard much about this?

Well, actually you have, but you just don't realize it. Celiac disease and gluten sensitivity masquerade as dozens and dozens of other diseases with different names.

http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html

 

[Cint]

So, couldn't there be a link between what the professionals call "pseudo-seizures" and all this?