Direct link: gluten and my brain

Erin Fitzgerald writes:

"I just wanted to tell Dr Rodney about my symptoms which may be of assistance for other cases. 

I have been unwell since my teenage years with all of the usual symptoms of gluten intolerance it was particularly bad for the past 11 years including diarrhoea every day. 

But my most disturbing symptom was fainting which was happening daily and ofter multiple times in the day. I had every test known to man with no positive results. Eventually I  went on a gluten free diet on my own accord and noticed an immediate ceasing of the fainting.

I initially thought this was because my diarrohea and associated malnutrition stopped however after accidentally eating a small amount of gluten and fainiting a few months later I realised there was a direct link between gluten and my brain. Possibily because I had suffered severe symptoms for so long.

I have searched for similar cases and never found any nor has any Doctors i talked to heard of a link between fainting and gluten allergy so I thought you might be interested.

Thank you for all your wonderful work."

Erin

Thanks Erin, I have similar patients. This is part of the Gluten Syndrome.

Cheers Rodney Ford 

Tired all of my life - got no tests

A sad story - 31 years sick

I have been helping one of my patients dads. His name is Chris and he is 31 years old. I have been investigating his son - who was sick, tired and grumpy.  It turns out that his son is gluten sensitive.

But Dad also had the same symptoms! He said:

“I’ve been tired all my life - constantly tired and moody. I can't think or concentrate properly, I was questioning my intelligence level when at school and struggled with concentration.”

“I have done so many things to try and keep up my energy: being fit, drinking lots of water and eating the best I can. However, I was always lacking in energy.  I just thought that's who I am. It has been a constant battle for me. I never feel fresh.”

“I thought I was normal. And, yes, my bowel motions always loose, and I do get tummy pain now and then  - but I thought this was normal.  My sleep is shocking. I wake up lots of times sometimes with nightmares. I hate mornings because when I wake up I do not feel refreshed - I still feel tired.”

My comment 

Isn’t this is a sad story. His blood test have shown up celiac disease. He is about to have an endoscopy to prove this. He is desperate to go gluten-free. He feels that most of his life has been spent struggling.  If only he had sought help earlier and got the appropriate test for celiac disease. This is such a common story.

The message: anyone who has any ongoing symptoms that have not been appropriately diagnosed should have blood tests for celiac disease and  gluten sensitivity.

Dr Rodney Ford

Gluten sensitive vs celiac - as serious?

Asked: "Would a person with non-celiac-gluten-sensitivity as serious a condition as celiac disease?"

Answered: "Good question. They are both serious diseases. Celiac sufferers get gut damage from gluten that can be seen by a microscope (called villus atrophy) and they are more likely to get mal-absorption of vitamins and minerals. 


However, gluten-sensitive people can get severe symptoms anywhere, and get extremely sick from gluten - but they do not get the gut tissue damage. As yet there is no single test that is accurate enough to make a diagnosis on all gluten-sensitive people. Often relies on a trial of GF foods." 


Both groups need the same treatment - zero gluten


http://www.drRodneyFord.com
Author of The Gluten Syndrome

Drugs for gluten - oh dear!

Diet not drugs is my mantra. This is the philosophy of my clinic. It is clear that many illnesses are gluten-induced. However, doctors usually treat the symptoms of their patient's with drugs. Although it would be better to treat the underlying condition, which is often celiac disease or gluten sensitivity (gluten syndrome). Of course, the treatment is a gluten-free diet.

The weird thing is that even when the gluten-illness is eventually diagnosed, some people still want to take drugs instead of diet. How odd!

I have just had a phone call from Julian who lives in a far-away city. He has recently been diagnosed with celiac disease and he is wondering whether to look at vaccines or drugs for celiac disease. He is wanting an easy fix for his illness without really trying out gluten-free.

I told him quite bluntly that he should stick to 100% gluten-free rather than trying to immunologically change his body. He is so addicted to gluten and this lifestyle that he is overwhelmed buy the thought of turning his food and social life upside down.

In my opinion, celiac disease with its serious gut damage, is only a minor part of the gluten problem. It is the anti-gluten immunological response, body-wide, which causes the long term damage. This includes neurological harm and autoimmune disease triggering.

I have stated this before. I suggest changing your food, rather than changing your immune system.

I do hope that Julian heeds my advice.

Cheers, Dr Rodney Ford

http://www.drrodneyford.com

Create gluten-conscious-thinking

Food allergy/sensitivity/intolerance so common, but often unrecognized.

I am in a philosophical mood.

This week I have heard (via my patients) significant hear-say criticism from my medical colleagues about my approach to food allergies and food intolerance.

A comment on skin prick testing from one colleague was “this just a load of crap”. I was appalled to hear this comment reported ... and all it did for my patient was to display his ignorance about these illnesses.

Another colleague apparently commented “I don't believe in gastric reflux , it's just a fad, just deal with it!” Again, this attitude has distanced this family from their GP. Again, belief has triumphed over the fact.

Unfortunately, these are not isolated reports. It turns out that the notion that foods can cause anyone harm is difficult to swallow (deliberate pun).

This lack of a basic understanding of food allergy is very odd in the face of so much medical research. For instance, a recent study on food allergy (Differentiating Food Allergies from Food Intoleran... [Curr Gastroenterol Rep. 2011] - PubMed result

www.ncbi.nlm.nih.gov) “Adverse reactions to foods are extremely common, and generally they are attributed to allergy.”

Yes, my experience is that Food allergy/sensitivity/intolerance so common, yet often goes unrecognized. Especially, gluten-illness.

Our plan is to create such a HUGE consumer demand that GF becomes main-stream - together we have great strength.

My mission: to Create gluten-conscious-thinking.

The recognition of wheat/gluten illness is very poor. Most medical people do not even consider the diagnosis. That is why as a GF community we have the responsibility of spreading the word about these gluten-related-conditions.

We all have a story - so go tell it.

Thanks Cheers Rodney Ford

Author of "The Gluten Syndrome"

Laurie Donaldson asks on facebook: "I wonder how it feels, Dr. Ford, to be one of the people who has known this all along and has tried so hard to get the word out!"

Well Laurie, thanks for the question. In one word, it feels "frustrating!"

I have spent 30 years treating children with food allergies (and most docs still won't 'believe' in food allergy.

I have spent 21 years (since 1990 when the gliadin antibodies were available) learning more and more about gluten/celaic/sensitivity - and guess what - most docs still won't 'believe' in gluten intolerance.

So what can I do?? I have written 9 books on allergy, gluten and nutrition (2 more to come out soon); I have travelled the world speaking about gluten-harm; I have launched the concept of Gluten Free Planet; I do blogs and facebook and twitter!; I run an allergy clinic; I write medical articles and present at GI conferences; I advocate advocate advocate.

I am the first person to describe "Gluten Syndrome" and have written the book about it!

It is hard work - but as Churchill said "Never, Never, Never Give Up". I am an optimist - we (the GF community) will prevail.

If you want me to speak somewhere - please invite me - I will see if I can make it.

thanks

Cheers Rodney

(join me on facebook)

Doctor denies gluten problems

Oh dear, it is a pity when doctors speak out about gluten not causing any harm to people other than celiac disease.

Doctor denies gluten problems

These 'disbelievers' should get up to date and read the latest medical articles that clearly state that gluten-sensitivity is a real entity that demands attention.

Please make a post on this newspaper site - to make a stand.

The reporter says 'But Dr Lane's position is unexceptional. Most of the experts I spoke to said that not only is there no medical justification for the majority of people who are following a gluten-free diet, it's just not healthy.'

Why is the GF diet healthy for celiacs, but unhealthy for anyone else? Weird logic.

So much dogma and not enough thought.

Cheers Dr Rodney Ford

I am a ZERO gluten man

Yes! I am a ZERO gluten man. This is based on the concern that tiny amounts of gluten in your food are enough to stimulate your immune system – even if you are not feeling directly unwell from the trivial exposure. What is trivial to you is not trivial to your highly tuned & sensitive immune system.

By definition, Zero gluten means ZERO! In other words – it is undetectable gluten (say less than 1ppm – gluten detection is now getting down to these very low levels). Consequently, ANY FOOD that has gluten detected between 5-20ppm should NOT be labeled GF. It is NOT gluten-free, even if it contains an apparently trivial amount. It needs to be labeled 5-20ppm!!! We need to know what is in our food! We need this information to make healthy food choices.

Although the manufacturers say this is not practical to make ZERO gluten products, it is if enough effort is put into cleaning up the contaminated food chain. The ZERO gluten market is growing. The GF community does not want gluten traces in their food. If we people do not buy their products - then they will have to change - or decide that they will not chase the GF market.

Yes, sensible labeling needed.

I propose a 3-tier system: zero gluten, less that 20ppm gluten, and glutened. It is that simple. Then we know what we are getting. How hard is this! Everyone satisfied. Why does the FDA just want one definition? It cannot be done – that is why they have had this “problem “ on their too-hard pile for the last 7 years!

Another piece of sound advise from Gluten Free Planet

Cheers, Dr Rodney Ford

Gluten Glamour – fact, fiction or fashion?

Philosophers have grappled with the concept of ‘true’ or ‘false’ or ‘maybe’ for eons. These questions are now being applied to gluten-free diets. Who has the right to be on a gluten-free diet?

It is a known fact that gluten causes some people to develop coeliac disease: this is damage to the gut which is reversible on a strict gluten-free diet (life-long). These people have a hereditary predisposition to getting coeliac disease, which is tested by the DQ2/DQ8 HLA gene. When coeliac disease was at first defined as intestinal damage (as proven by biopsy), 40 years ago, there were no blood tests to help with the diagnosis. Things have changed radically since then.

The gluten picture is now much more confused. The entity of gluten syndrome / intolerance has blurred the situation. There is now excellent data to show that gluten sensitive reactions are very common, with most estimates finding about 10% of the population to be adversely affected by gluten. Most of these gluten-sufferers do not have coeliac disease: they are negative to coeliac blood tests (tTG, EMA and DGP). However, they feel very much better on a gluten-free diet. So, now gluten syndrome / gluten intolerance has blurred the boundary between coeliac disease and non-coeliacs. There is now a grey zone between the black and white of true and false.

For the last 30 years I have been interested in people who have responded to a gluten-free but who do not have coeliac disease. This condition of gluten intolerance/sensitivity affects the bowel but also the skin and nerves. Because there is no specific test for this condition, the way to diagnose it is a trial of a gluten-free diet. And many people trying this feel so much better.

Recently, many celebrities including Madonna, have adopted a gluten-free diet … and have found it to their liking. They feel great. Being celebrities, their fans are very interested in what they are eating. This curiosity has helped spark great awareness about gluten-free diets. Lots more people have subsequently adopted a gluten-free lifestyle and are feeling the benefits of this.

Such wide-spread adoption of the gluten-free diet, without having any blood tests or endoscopies, has upset much of medical profession. Their claim is that going gluten-free without any blood tests is masking the possibility of diagnosing coeliac disease. In most medical establishments there are those who believe that coeliac disease should be the only reason (without exception) to be on a prescribed gluten-free diet. I disagree with such a stance, as do many others who have helped to define The Gluten Syndrome.

Gluten is an unnecessary protein. Nobody can digest gluten properly. Gluten is implicated in triggering many autoimmune diseases. Gluten is the cause of much disease and upset. Gluten is associated with depression and schizophrenia.

A gluten-free diet has been attributed to cure such problems as eczema, reflux disease, mental and behaviour problems, headaches ans migraines.

And now being gluten-free is becoming a celebrity status. In my opinion this is an excellent thing to be happening. It has allowed lots more people to hear about the idea of going gluten-free and feeling better from their chronic ills. Of course, there will be many people who adopt a gluten-free diet for whom it is not necessary, but his is okay. A gluten-free diet is a healthy diet, and there is no detriment of being gluten-free diet, as long as you adopt it by eating in a wholesome way (the majority of the population eat an unhealthy diet … most people eating gluten-free eat a lot better). Time will tell whether this celebrity status persists. My prediction is that it will. I also predict that in another decade, a third of the population will be on a gluten-free diet.

Adoption of the gluten-free diet by celebrities has just hastened the inevitable. The fact is that gluten-free will continue to regarded as both glamorous and a healthy food choice.

Dr Rodney Ford

Author of The Gluten Syndrome

Gluten-free: is it only way to manage celiac disease?

Well, the simplistic answer to this question is “yes”. However this is a complex question. To narrow the question, I will first assume that coeliac disease means that ‘a diagnosis has been made by endoscopy showing the characteristic flatness/atrophy of the small bowel mucosa’ (I will address the question of how early you can diagnose coeliac disease in a later blog).

Yes, a gluten-free diet is the central management strategy for coeliac disease. But what does gluten-free mean? A gluten free diet means zero gluten for life. No exemptions. Certainly there are many people who suggest that people can eat gluten to tolerance. I disagree. Any gluten has the potential to cause you harm.

But does zero gluten literally mean non-at-all? The most complex part of answering this question is “what does a zero-gluten-diet mean in terms of every-day practicality?” Recently, there has been a lot of debate about how many parts per million (ppm) of gluten is acceptable in food. Pragmatically, because it is so difficult to get rid of cross-contamination in food production and processing, the number of 20 ppm is now surfacing as a reasonable level of gluten to be consumed (some countries have 200ppm, and the FDA likely to agree to 20ppm). This seems to be a negligible amount. However, there are still concerns for some people who seem to be exquisitely sensitive to gluten.

For me zero-gluten means no gluten. This can be achieved if you eat fresh fruits and vegetables, unprocessed meat and fish, uncontaminated rice, corn and other alternate grains, and unprocessed dairy foods and eggs, nuts also. This means no packet or processed foods.

But it is a lot more that ‘just’ going gluten-free. Yes, there are a lot more things to do for healing someone with coeliac disease. The longer that you have had coeliac disease, the worse your body will be. More healing will be required. You may need additional minerals, vitamins and probiotics. There are a number of routine health checks to take. You should also ensure that your gut has healed (via blood test and maybe repeat endoscopy).

There is talk about vaccines for coeliac disease. I think these are a long way off. On top of this gluten is a trigger for many autoimmune diseases and neurologic conditions. So giving pharmaceutical treatment for coeliac disease will still not remove the threat of gluten to your body.

Zero gluten is the main stay of treatment for coeliac disease. I do not see this changing much in the future. I do see the gluten-free lifestyle being very widely adopted over the next decade. I do see better non-gluten grains. I do see a generation in much better nutritional health.

http://www.DrRodneyFord.com

Dr Rodney Ford, Author of The Gluten Syndrome

For clinical guidance, check out the eClinic

Gluten-free is not always healthy

Was sent a message advertising the gluten-free benefits of a “Natural alternative healthy energy drink”. This is misleading and dishonest.

It is just a sugar (sucrose) drink with a few added vitamins. Much better to eat fruit and veggies. Better value to buy and eat healthy whole foods and drink water. Sugar has fructose in it: this is potentially a bad thing (see Sweet Poison).

Being a "gluten-free" product does not automatically mean that it is healthy, or good for you. Often it is not. For example, Coca-Cola is also gluten free (and fat free too). However, I do not recommend it.

By the way, a "Healthy Sugar" drink is an oxymoron!

Cheers, Dr Rodney Ford

Gluten free means ZERO gluten

Often I am asked: "How strict do I have to be?"

"Does a little bit of gluten-food now and then really matter?"

YES IT DOES!

The word that I use for gluten is "ZERO". I have come to this conclusion because it is important for your antibodies against gluten to slowly disappear. Every time that you have gluten (by error or as a deliberate choice) you stimulate your immune system to continue to produce these potentially harmful antibodies again. This undoes a lot of the work that you have been doing to dampen down the gluten reactions.

So I say Gluten free means ZERO gluten - not negotiable.

To achieve this, you will need to be absolutely convinced about your "gluten-induced-disease" (get a confirmed diagnosis and get the correct set of blood tests). Also develop a group of people around you (who understand the gluten thing) who can help and nourish your diet path. AND, you can help them. Join our facebook page - that will help too.

The simple answer is "ZERO gluten"

Cheers Rodney

Visit the eClinic for a second opinion: http://www.DrRodneyFord.com

No gluten hoax

Steve Edwards wrote a blog “Gluten hoax” - gluten free for dummies.
http://steve-edwards.blogspot.com/

This is my response.

Yes indeed, the gluten-free debate is raging hot. There are “believers”, and there are “non-believers”, and then fortunately there are the facts so we can be scientific about the problem. Whether gluten sensitivity exists or not is a matter of data, not belief.

Of course, with any food related diet, there will be a fringe /fad elements. This does not matter. This does not influence the facts. Our world is not simply black and white: there are many grey areas in our experience that require reasoned thought.

When it comes to gluten, undisputedly it does harm some people – however, the unanswered question is how big the problem might be. A survey this year shows that up to 25% of the USA population is either going gluten-free or substantially reducing their gluten intake. Interesting, and some of this food-behaviour will have a fad element. But, many of these people will genuinely have gluten-sensitivity.

Gluten sensitivity is only now being systematically investigated by the medical science community. The celiac-disease-doctors have now recognised that gluten does in fact severely affect many non-celiac sufferers. Most doctors dealing with gluten sensitivity estimate the problem to affect at least 10% of the population. Dr. Alessio Fasano, director of the Center for Celiac Research at the University of Maryland School of Medicine, figures that up to 7 or 8% of the U.S. population have some kind of sensitivity to gluten.

Eventually, the proportion of gluten-affected people is likely to be much higher. Currently, gluten-sensitivity can be tested for by AGA (Anti-Gliadin-Antibody) tests (also known as the IgG-gliadin test). However, this test is not widely available. More accurate and more sensitive tests for gluten sensitivity are currently being developed. When these are in use, the picture will become clearer.

Research evidence shows that gluten has a hand in triggering mental illness, autoimmune disease, skin problems and gut disease. As yet, the burden of gluten on the population has not been properly quantified.

Therefore, to launch a tirade about gluten-free being a fad and to ridicule people adopting a gluten-free life-style is, to my thinking, an uniformed approach. When you have had a chance to look at the data (for instance the work by Hadjivassiliou M , “Gluten sensitivity: from gut to brain”, Lancet Neurol. 2010 Mar;9(3):318-30) perhaps you will be in a position to write another more thoughtful piece.

Thank you for raising this controversy
Cheers, Dr Rodney Ford.

bad-for-us-foods are cheap

Is it that gluten-free-foods are expensive, or rather that bad-for-us-foods are cheap? It costs more to eat more healthy, so it can be a tough decision about what to buy. What you buy you eat.

This is part of the explanation for the obesity epidemic in our country.

The latest TIME magazine states "If you want to get sick, just eat what your body wants you to eat: meat, fat, salt and sugar ..."

One of the most confronting things that we humans fear is curbing our natural un-healthy drives and learning to eat in a health-based fashion. Our brains do not like change - even if it is good for us!

Cheers Rodney Ford

Time magazine

What is the difference between gluten and gliadin?

Hi everyone. I am associate Professor, medical doctor, paediatrician (children's doctor). I have done a lot of studies about problems related to food allergy, gluten-sensitivity (the gluten syndrome), coeliac disease, and gastroenterology problems. I am also known as the medical food doctor!

Today I will be sharing with you some facts about the difference between gluten and gliadin:

Technically, gluten is the protein that is left behind after all the starch is washed away from wheat flour. However, gluten is actually made up of two main groups of proteins: the gliadins and the glutenins.

When these gluten proteins are digested, they are broken down into much smaller pieces (these are called peptide chains).

Unfortunately, several of these peptide chains are harmful to those who are gluten-sensitive or who are celiacs. These peptides can cause damage when they are put directly into the small intestine. An unusual feature of these gluten peptides is that they are relatively resistant to digestion in your gut.

There are similar peptide chains in all of the gluten-grains: wheat, rye and barley. Of interest, , the oat proteins have slightly different peptide chains (avenin) – so these are not usually harmful to celiac patients.

When we talk about a “gluten-free” diet, we are actually talking about our food being completely free of these harmful peptides from wheat, barley, and rye.

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If you're suffering from those symptoms and you're not sure if you have a food allergy or not please contact me or leave me a comment.

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