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

Gluten can impede growth - is your child short?

Lots of parents bring their children to see me because of short stature: that means they are shorter than expected.

Classically, short stature is seen in children with celiac disease. It is usually attributed to nutritional deficiency.  However, this cannot be the usual reason – because most of the children I see are not nutritional deficient – they are not loosing weight, and they have no bowel damge, although they have evidnce of gluten sensitivity.

So why are they short?  Some of them come from short families – so they are genetically short.

But more likely, gluten and the immune response to gluten is adversely affecting the activity of growth hormone.

http://journals.lww.com/jpgn/Fulltext/2010/12003/Short_Stature_and_Catch_up_Growth_in_Celiac.11.aspx

A recent paper comes to this conclusion: “short stature is one of the most common clinical manifestations of CD and should be considered in all children with short stature. Catch-up growth is observed on gluten-free diet (GFD), mostly in the first 6 months from diagnosis [if this is due to a nutritional deficiency]. The absence of catch-up growth requires the evaluation of compliance and endocrinological evaluation. Patients should be tested for GH reserve, particularly if the test for anti-pituitary antibodies (APA) is positive.”

Many research groups report a dysfunction of the endocrine growth axis in children with CD.  And likewise with gluten sensitivity.

Every child with suspected growth issues needs to be checked out for celiac disease and gluten sensitivity.  In these children a gluten-free diet might make a big difference.

Dr Rodney Ford

http://www.DrRodneyFord.com

I suppose he found something wrong - reflux ignored

I have just seen a family with a previously ill child.  But their GP is not happy with me or my diagnosis.

After coming to see me in the Children's Clinic (and being successfully treated), their GP said to the mum: "I suppose now there is something wrong with her - if you had left her with me for the day, I would let her cry it out."  The implication was that the baby was being naughty, that the mother was making up the illness ("it's all in your head") and that I was fabricating the diagnosis and treatment.

Oh dear!

This baby girl had been screaming at night, appearing to be in pain.  She would often vomit and spill up old milk. She was distressed with gastric reflux (GORD).  She responded well to acid suppression medications (omeprazole 10 mg a day) and is now happy at last and sleeping again.

Yes, she did have a real illness.  So I ask you: "Is it a crime for me to make a diagnosis that the GP has not made?"

In my opinion, as a paediatric specialist and gastroenterologist, if a child is in pain, then it is likely that something is wrong. If I can diagnose the child's problem and help her get well, surely this is a good thing to have done.  So why is the GP so critical of me, of mum and of the baby?

The most common illnesses in children, after viral diseases, is food allergy, food intolerance and gastric reflux disease. Unfortunately, GPs have been encouraged not to treat these diseases, but rather to regard these symptoms as if they are part of 'normal child development'.  By taking this viewpoint, they can then justify saying "it is something that you will just have to put up with - or grow out of" and they can then place the blame for the child's behaviour on the parent's incompetent child management skills (or lack of them).

Blame the child, blame the parents, and then blame the paediatrican for making a non-existant diagnosis.

Oh dear!

I see my role as an advocate for the baby and family.  My job is to help solve the child's problem - not to ignore their pain.

Dr Rodney Ford

http://www.drrodneyford.com

Who endorses gluten syndrome?

Three years ago I asked the question "Who endorses the Gluten Syndrome?"

At that time, the “HealthPathways” website (which is a collection of medical guidance) of my local hospital board acknowledged the entity of gluten-sensitivity under the pathway of coeliac disease. Gluten sensitivity is a condition that presents with similar symptoms to celiac disease, but without the intestinal damage, and is treated with a gluten-free diet.

However, all references to gluten-sensitivity have been subsequently removed. This decision was made by the members of the ‘Child Health Team’ (of the Canterbury District Health Board, CDHB), which included 3 paediatricians and 7 General practitioners.  This section was reviewed by all the Child Health specialists and accepted by the Department of Paediatrics. It was also reviewed by many general practitioners particularly the Clinical Practice Education Committee of Pegasus Health.   

But, with the publication of a landmark paper of “Spectrum of gluten-related disorders (http://www.biomedcentral.com/content/pdf/1741-7015-10-13.pdf), perhaps it is time for the Health Pathway of coeliac disease and gluten sensitivity to be revised.

There have been many developments over the last 3 years: the diagnosis of gluten sensitivity has come of age.  The concept of gluten-related-disorders has gathered momentum with a number of converging influences: the boundary between celiac disease and gluten sensitivity has become blurred; the “gold-standard” small bowel biopsy for the tissue diagnosis of celiac disease is no longer regarded as mandatory; there has been recognition of a wide range of gluten-related disorders without intestinal damage; the extensive neurological effects of gluten have been well documented; and there has been a widespread adoption of gluten-free diets and lifestyle in the community.

Here is the background of these statements:

1) Spectrum of gluten-related disorders

A group of 15 international celiac experts, who up until a few years ago were skeptical of gluten causing any illness other than celiac disease, have now defined a much wider group of illnesses which they have called “gluten-related disorders”.  This landmark paper “Spectrum of gluten-related disorders: consensus on new nomenclature and classification” places celiac disease in context of other gluten-illness.  Celiac disease no longer dominates the gluten sensitive picture (Sapone et al. BMC Medicine 2012, 10:13, published 7 February 2012). http://www.biomedcentral.com/content/pdf/1741-7015-10-13.pdf

The abstract reads:

“A decade ago celiac disease was considered extremely rare outside Europe and, therefore, was almost completely ignored by health care professionals. In only 10 years, key milestones have moved celiac disease from obscurity into the popular spotlight worldwide. Now we are observing another interesting phenomenon that is generating great confusion among health care professionals. The number of individuals embracing a gluten free diet appears much higher than the projected number of celiac disease patients, fueling a global market of gluten free products approaching the $2.5 billion in global sales in 2010. This trend is supported by the notion that along with celiac disease, other conditions related to the ingestion of gluten have emerged as health care concerns. This review will summarize our current knowledge about the three main forms of gluten reactions:

1) allergic (wheat allergy)

2) autoimmune (celiac disease, dermatitis herpetiformis, and gluten ataxia)

3) possibly immune-mediated (gluten sensitivity)”

Regarding gluten sensitivity, they say: “there are cases of gluten reactions in which neither allergic nor autoimmune mechanisms can be identified. These are generally defined as non-celiac GS or more simply, GS. Some individuals who experience distress when eating gluten-containing products and show improvement when following a GFD may have GS instead of CD. GS is a condition distinct from CD and is not accompanied by the concurrence of anti-tTG autoantibodies or other autoimmune comorbidities.”

They go on to say: “the two conditions cannot be distinguished clinically, since the symptoms experienced by GS patients are often seen in CD … their symptoms included abdominal pain (68%); eczema and/or rash (40%); head- ache (35%); ‘foggy mind’ (34%); fatigue (33%); diarrhea (33%); depression (22%); anemia (20%); numbness in the legs, arms or fingers 20%; and joint pain (11%).”

They conclude: “All individuals, even those with a low degree of risk, are therefore susceptible to some form of gluten reaction during their life span. Therefore, it is not surprising that during the past 50 years we have witnessed an ‘epidemic’ of CD and the surging of new gluten-related disorders, including the most recently described GS.”

2) No definitive test yet for gluten sensitivity.

Unfortunately, there is no accurate or reliable test for gluten sensitivity.  However, the IgG-gliadin antibody (also know as AGA, anti-gliadin antibody) has been widely used as the best-available-marker, particularly in the identification of neurological and psychiatric gluten-disorders. Between 40-50% of gluten sensitivity patients may have IgG or IgA anti-gliadin antibodies (AGA Sapone A et al. (2010). Differential mucosal IL-17 expression in two gliadin-induced disorders: gluten sensitivity and the autoimmune enteropathy celiac disease. International Archives of Allergy & Immunology; 152: 75-80 http://www.ncbi.nlm.nih.gov/pubmed/19940509;

Bizzaro N et al. (2010) Cutting edge issues in celiac disease and in gluten intolerance. Clinical Reviews in Allergy & immunology

http://www.ncbi.nlm.nih.gov/pubmed/21181303.

Therefore, if the IgG-gliadin antibody is not elevated, this cannot rule out a diagnosis of gluten sensitivity.  But, if elevated it can contribute to the diagnosis.

Research laboratories are actively seeking specific test.  Until such a test is available, elimination and challenge with gluten remains the most effective option.

3) gluten sensitivity a common illness

Dr. Fasano estimates that 6% of the population has gluten sensitivity, compared to 1% with celiac disease.  http://celiacdisease.about.com/b/2011/03/11/u-of-md-study-identifies-differences-between-celiac-gluten-sensitivity.htm

Gluten sensitive now has its own Wikipedia page (http://en.wikipedia.org/wiki/Gluten_sensitivity#cite_ref-2) which also cites this figure.  The problem of estimating the incidence of gluten-related-disorders is that there is not yet a diagnostic test.  Current estimates are likely to be conservative.

It is now known that no one can successfully digest gluten, and that we all have the potential to get unwell from gluten, and that it can cause illness in many different ways.  Celiac disease has increased five-fold over the last 40 years, (http://www.ncbi.nlm.nih.gov/pubmed/20868314) and it is likely that gluten sensitivity has increased at the same rate.   

4) Change of diagnostic guidelines for celiac disease.

No longer is small bowel biopsy necessary for a diagnosis of celiac disease. In certain cases, serology is now sufficient for the diagnosis of CD. This has been discussed for the last 10 years as blood tests have been developed to accurately detect gut damage (EMA, tTG and DGP).  Added to this is the genetics that can identify those people who can sustain intestinal damage with gluten (who carry the HLA DQ2/DQ8 alleles).  Finally, the endoscopy is expensive and unreliable for the diagnosis of celiac disease.  With the rapid increase in the incidence of celiac disease, it is impractical to demand tissue diagnosis for the millions of celiac disease sufferers.

ESPGHAN (European Society for Pediatric Gastroenterology, Hepatology, and Nutrition) has new guidelines for the diagnosis of celiac disease http://www.phadia.com/Laboratories/Autoimmunity/Resources/PoM/2012/No-1-2012/ , they conclude: “The diagnosis of CD depends on gluten-dependent symptoms, CD-specific antibodies, the presence of HLA-DQ2 and/or HLA-DQ8, and characteristic histological changes in the duodenal biopsy. In case of high antibody levels the diagnosis of CD may be based on a combination of symptoms, antibodies, and HLA, thus omitting the duodenal biopsy.”

Their key message is: with high tissue damage markers (tTG IgA, EMA or DGP), in genetically susceptible people, celiac disease can be diagnosed without performing a duodenal biopsy.

5) Gluten can harm brains and nerves

Evidence shows that gluten does significantly affect the brain and nerves: gluten damage is not restricted to the gut.  This is elegantly documented by Marios Hadjivassiliou (Gluten sensitivity: from gut to brain. The Lancet Neurology, Volume 9, Issue 3, Pages 318 - 330, March 2010), http://www.thelancet.com/journals/laneur/article/PIIS1474-4422(09)70290-X/abstract

They write: “Gluten sensitivity is a systemic autoimmune disease with diverse manifestations ... coeliac disease, or gluten-sensitive enteropathy, is only one aspect of a range of possible manifestations of gluten sensitivity … gluten sensitivity was shown to manifest solely with neurological dysfunction.”

They conclude: “To improve diagnosis rates, the perception of physicians that gluten sensitivity is solely a disease of the gut must be changed.”

6) Double blind studies

The term “gluten sensitivity” was first used by Prof W Dicke the discoverer of gluten-related-disorders in his 1950 MD Thesis.  He worked out that gluten was the culprit causing the illness (diarrhea, poor growth and irritability).  He made his diagnosis clinically by elimination and challenge (not double blind), and with no blood tests or biopsy. He said “in the clinic, one finds many sub-acute forms of enteritis and dyspepsia which respond poorly to normal therapy but well to wheat deprivation.”

In the 1960s, with the instigation of the small bowel biopsy, the whole perspective of diagnosis became focused exclusively on the gut.  Celiac disease became a strictly gastrointestinal illness.  This focus became so intense that it led to the un-substantiated dogma that: gluten only caused celiac disease … and if the patient had a normal small bowel biopsy, then gluten could not be causing any harm.  This has now been shown to be a false doctrine.

Currently, as in Dicke’s day, to establish if someone is gluten-sensitive, still relies a clinical trial of elimination and challenge.  However, not unreasonably, there is a call for double-blind studies to establish the place of gluten-related disorders outside the framework of celiac disease.

For instance, in IBS patients, who stated that they were gluten free from self-diagnosis (and who had celiac disease excluded), were randomized to either gluten or placebo treatment groups. The finding was that symptom-severity-scores (of pain, stool consistency and tiredness) were significantly higher for gluten-eaters compared to the placebo-gluten-free group (Biesiekierski JR, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD, Shepherd SJ, Muir JG, Gibson PR: Gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial. Am J Gastroenterol 2011, 106:508-514.  http://www.ncbi.nlm.nih.gov/pubmed/21224837

7) 10% already going gluten-free

Over the last few years there has been a widespread adoption of a gluten-free diet in the community.  Peter Gibson, professor of medicine at Monash University's Eastern Health Clinical School, estimates that in Australia, up to 10 per cent of people who are avoiding gluten because they think gluten is their problem http://www.gesa.org.au/media.asp?cid=5&id=153.

However, until there is a reliable way to make the diagnosis, it will remain difficult to quantify the problem. Gibson plans to investigate the prevalence of non-coeliac gluten intolerance, why it occurs and whether low levels of gluten can be eaten safely. http://www.smh.com.au/lifestyle/diet-and-fitness/gluten-intolerance-possible-without-coeliac-disease-study-finds-20110117-19u5b.html

In America, the adoption of gluten-free diets is also increasingly common.  This can be measured by the sales of gluten-free products, which have a compound annual growth rate of 28% from 2004 to 2011.  By 2012 the market is expected to reach about $2.6 billion in sales.

Conclusion

Gluten was first implicated as causing disease 62 years ago by W Dicke.  Initially, it was considered a rare disease affecting only the gastrointestinal tract. But now gluten has been recognized to cause a spectrum of illnesses, with a number of different pathological and physiological mechanisms.  Celiac disease is becoming much more common, and gluten-related disorders are thought to affect at least 5% of the total community (and obviously it therefore affects a much higher proportion of the un-well-community).  It is time for gluten-related-disorders to be part of the medical main-stream differential diagnosis.

Dr Rodney Ford

http://www.drrodneyford.com

9 March 2012

Gluten Free Planet - 3 options

Dr Rodney Ford is a pediatrician and gastroenterologist.  He is very interested in gluten and how it causes people harm.  He is heading up the project called Gluten Free Planet. 


  

The idea is to have the whole world gluten-free, which might seem crazy to some people. However, it depends on how much gluten is causing harm to everybody – we will talk about the burden of gluten harm a little later.

I am launching the project of collaboratively producing a book called Gluten Free Planet.

There are 3 options for humanity:

• 1st option - just accept the status-quo - that means we do not do anything about gluten - we just leave things as – just leave people suffering as they are - just get on with it.
• 2nd option  - is to change the people - to change the people with drugs and vaccines – so that their immune system is tricked into accepting gluten into their bodies.
• 3rd option - which is the one that I promote – is to change the food – wouldn’t it be a better idea to change the food so that the food we eat suits us – rather than change the body so that this potentially harmful food doesn’t upset us.

So I am aiming to change the food of the world to a gluten-free status. This is  a huge thing to do  - but it is doable … and with the will of the gluten-free community behind us, I know that we can persuade manufacturers, persuade farmers, persuade the food chain, and persuade everybody that we are much better on this Planet in a gluten-free state.

Dr Rodney Ford

http://www.drrodneyford.com,