Desperate - really need your [gluten] help

“I really need your help. I'm desperate,” writes Emma from the UK.

“I need some help with regards to my three-year-old son. He was waking up screaming in pain in the night, for months. He also had bad constipation, and bad behaviour (to the point I thought there was something wrong with him developmentally).

“I read about gluten online, and we cut it out  - and instantly he was better. We finally got an appointment to see a paediatrician, who today told me I have to give him a normal diet for three months because it is unfair to put him on a gluten free diet if it isn't that that is wrong with him.”

I can't do this to him. It would be detrimental to his health and behaviour as he is such a sweet well- behaved boy now. I don't know what to do.”

I reply:  “ Thanks for your query - sorry that you have this problem – but you do not need anyone's permission to keep your child gluten free (gluten zero) - have a look at my book "The Gluten Syndrome" - http://www.theGlutenSyndrome.com

Comment:  Unfortunately I get messages from desperate mums, all over the world, who know that gluten is harming their children, but who are not being given any medical/health support – in fact it is worse, because most medics are still disparaging about the diagnosis of gluten-related disorders.  It is timely to remind you about the paper “Spectrum of gluten-related disorders: consensus on new nomenclature and classification.”  This was written by 15 of the leading celiac-doctors (Including: Sapone A, Bai J, Ciacc C, Dolinsek J, Green P, Hadjivassiliou M, Fasano A ) who have (belatedly) acknowledged that gluten-related-illnesses are real.  However, we are all waiting for better blood tests to be developed in order to make a more certain diagnosis.

Gluten-related disorders are common – affecting at least 10% of the population.

See this link: http://www.biomedcentral.com/content/pdf/1741-7015-10-13.pdf

The problem: the community is now better informed about gluten and its adverse health consequences than is the medical profession.  It will take another generation of medical teaching and research before the health system catches up.

My role: In the meantime, I see my role is to strengthen the community groups and be a strong advocate for the concept of gluten-zero (GZ) http://www.glutenZEROglobal.com

 

Hope that this helps you

Cheers, Dr Rodney Ford

Just let the children suffer - GERD

Gastro esophageal reflux disease (GERD).  What a sad conversation.

Every day in my clinic I am presented with distressed children and desperate parents who are told to “tough it out.”  Who are told (or inferred) that they are inadequate parents, or that their child is “just being naughty” or “going through a developmental crying stage.”

One of my mums sent this email today: “I have been at a doctor appointment today and my doctor has told me to try to wean by child off omeprazole, as there has been a recent study out saying that babies shouldn't be having this medication as the long term effects aren't known. Can you please advise me on what I should do as I don't want to cause more harm than good by giving it to him but at the same time he is drinking well [before he went onto omeprazole he was having major feeing and sleeping issues]  Thank you.”

First do no harm.  Surely there is a medical imperative to look at the long-term harm to your baby, who is left in pain for months and sometimes years, untreated, with esophageal burning day after day.  Developing hyper-vigilance and behavior disorders.  The distressed parents coping with depression, sleep deprivation and inadequate bonding to their child.  The separation or divorce precipitated by endless nights of inconsolable crying.  The feeding disorders that stem from chronic gut pain and regurgitation, with difficulty introducing solids.  Children who are not thriving and whose brain growth might be compromised.

I don’t understand the reluctance of so many doctors to turn a blind eye to reflux disease and allow such obvious suffering.  It is a serious well documented condition. The very-long-term side effects on all modern medications are unknown.  Speculative.  Omeprazole has been used for over 30 years with an excellent safety track record.  We know that untreated GERD can be a disaster.

My plea is to have compassion on these babies and children and let them have the medication that they need.

Dr Rodney Ford

http://www.DrRodneyFord.com

"Every mouthful matters"

In your experience, you probably recognize that most people have no idea what they are putting into their mouth.  If people are hungry - then eat.  And if they eat, then ANYTHING will do - more sugar, fat and more wheat.

In our Children's Clinic and Allergy Centre we see children ( and their parents) who are ill BECAUSE of their lack of knowledge about food.

It turns out that wheat/gluten is their major problem.

You can see my arguments of everyone adopting Gluten ZERO in my book "Glute: ZERO Global".

http://www.glutenZEROglobal.com

Dr Rodney Ford

Wheat belly controversy - reply to Guandalini

The “Wheat belly” controversy. Guandalini says, "The assertions made by Dr. Davis (a cardiologist, not a nutritionist nor a gastroenterologist) are not grounded in fact, let alone any evidence-based research."  I have many points of concern to make –

Letter from Dr. Guandalini to CBS This Morning

I was quite surprised to see that CBS news would provide unquestioned credibility to Dr...

By: The University of Chicago Celiac Disease Center

1) Why would he first point out that Dr Davis is not a nutritionist (presumable inferring that Davis has no credibility) – surely, to denigrate the author is an irrelevant argument.  Also, without foundation he suggests that Davis is inaccurate ("no knowledgeable physician on the program to present a more accurate, balanced viewpoint.")  Guandalini should keep to the facts with his statements.

2) Dr Davis has seen the harm of wheat in his patients - he reports that they do remarkably well when they abandon wheat. His observations have merit.  He is an experienced physician with compassion for his patients. He asks why is half of America fat/obese and sick?  He provides convincing arguments.

3) Davis has subsequently accomplished the huge effort of extensive literature research and presents a number of plausible mechanisms (that need testing).  His book is extensively referenced with up-to-date research.

4) Guandalini attempts to ridicule the book by specifically bringing up the morphine-like effect of gluten. He is apparently “stunned” by the statement about the research on gluteo-morphine by Zioudrouj (1979).  He dismisses this work because it was published over 30 yeas ago - surely that does not mean the work is worthless or wrong.  Also, why would he call the Journal of Biol Chem an “obscure” publication? Others have confirmed this morphine-like effect: "Demonstration of high opioid-like activity in isolated peptides from wheat gluten hydrolysates" (Huebner, 1984).

5) It is easy to rubbish both a book and its author, but it is an entirely different thing to comment constructively and add to the conversation.  I challenge any other comments to completely read the Wheat belly” book before being critical. You might be surprised.

6)   Guandalini, concludes “CBS This Morning has added to the confusion and did a disservice to its viewership to allow such questionable information be portrayed as fact.”  Facts are changing with new knowledge. Because Guandalini disagrees, does not mean that Davis does not have valid facts. Let’s not stifle debate.  Yes, more double-blind randomized trails are required, and this needs hypothesis testing.

7) A red flag! By the way, in Seattle next week, my new book “Gluten: ZERO Global” is to be launched.  Like Davis, I have also come to the conclusion that everyone would be better off eliminating wheat/gluten from their diets.  So, perhaps I am also in line for a book review from Guandalini.

8) By the way I am a pediatrician, gastroenterologist, and allergy specialist, former Professor of Pediatrics, New Zealand (MD, MB. BS., FRACP).  Author of “The Gluten Syndrome”.

Gluten illness diagnosis: primarily elimination and challenge

Just been emailing yet another person who wants a certain diagnosis for gluten sensitivity.  I said:

“Many people do not get the full set of blood tests from their healthcare professional.  They, like you, often feel your frustration. However, the first thing to do is exclude celiac disease (you have now done this on several occasions, with two normal tTG tests).

The next point to understand is that the gluten sensitive test, IgG-gliadin antibody, is not a 100% accurate test.  If you have a high level of this antibody, then gluten sensitive is very likely.  But a negative test does not rule this out.

At your stage (still unwell with normal celiac disease test), your next step is to trail a gluten-free diet for the next 3-4 months to see how you feel. It is worth while, and not hard to do. The diagnosis of gluten sensitivity (or gluten-related-illness) is primarily a elimination and challenge exercise.

See this paper:

The top 15 celiac-doctors have now acknowledged that gluten-related-illness is real, it needs much better diagnostic tests, and it is common. They have released a powerful consensus statement: "Spectrum of gluten-related disorders: consensus on new nomenclature and classification."

Sapone A, Bai J, Ciacc C, Dolinsek J, Green P, Hadjivassiliou M, Fasano A, et al.

 BMC Medicine 2012, 10:13

http://www.biomedcentral.com/content/pdf/1741-7015-10-13.pdf

Hope that this helps you

Cheers, Dr Rodney Ford

Gluten Free Reluctance in Celiacs

A recent study (in England) has found that over 40% of patients with coeliac disease are dissatisfied with a gluten-free diet. 


These patients were also asked to describe their preference for three different potential therapeutic approaches, of which patients preferred a vaccine approach over an anti-zonulin and peptidase approach by a moderate amount.

They are keen to go back onto gluten if they can get some sort of vaccine or pill to change the way their gut processes gluten. They are willing to make unknown changes to their immune sytmes so that they can go on eating a toxic food.

To me this shows:1- the massive ignorance of these people about the serious harm of gluten. 2 - the lack of knowledge about the neurological harm of gluten. 3 - the low level of family and community support for these people. Going gluten free should be easy, healthy and enjoyable.

Gluten Free Planet has a lot of work to do!

Cheers Dr Rodney Ford.
http://www.DrRodneyFord.com
Author of "The Gluten Syndrome"

Aziz I, Evans KE, Papageorgiou V, Sanders DS. Are patients with coeliac disease seeking alternative therapies to a gluten-free diet? J Gastrointestin Liver Dis 2011; 20: 27–31.
http://www.jgld.ro/2011/1/6.pdf

Gluten awareness growing

Gluten awareness / gluten consciousness


More and more people are waking up to the knowledge that gluten is potentially harful for us all.
More than 1-in-100 have celiac disease.
More than 1-in-10 react to gluten.


Have another look at this paper: http://www.biomedcentral.com/content/pdf/1741-7015-10-13.pdf.  It is a landmark consensus paper, by 15 international gluten medical experts, that now confirms that gluten causes many common illnesses. 


They say, and I quote: "All individuals, even those with a low degree of risk, are therefore susceptible to some form of gluten reaction during their life span."
Yes, we should all be aware of gluten.  
Our group is on the way to creating a gluten-free planet.  In another 10 years, over 30% of the population with be living a GF life   We have all travelled our own gluten-free path, and the company of others makes it easier. 


Dr Rodney Ford http://www.drRodneyFord.com