Celiac gate-keepers reluctant to accept gluten syndrome

I have read these comments with interest. So far, all comments support my position that gluten syndrome is common, and usually not associated with coeliac disease. Nobody has yet made a contrary statement.

I am a paediatric gastroenterologist. In my clinic, I look for coeliacs every day - I find a few, but for every coleiac, there are another 10 children with gluten intolerance. All you have to do is look at pubmed and put in the search words 'gluten sensitivity' to find the medical research that documents the gluten syndrome. I gave Matt Philips (the author) lots of these references, however he chose to mostly ignore them (so that he could write a 'balanced' article.

Most gastroenterologists do not want to accept gluten intolerance as this would be inconvenient for their on-going practice. Currently they wield the power of endoscopy as the gate-keeper of the coeliac diagnosis. So best to pretend that the gluten syndrome is a placebo effect (nonsense!) and that these gluten sufferers are deluded. Crazy. My purpose is to help my patients get better, and often this means seeing if gluten might be causing them harm. Coeliac disease is not the only condition that is triggered by gluten.

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

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

Celaic Gut: When will my bowel recover?

Celiac disease is defined as “small bowel mucosal damage, which is reversible on a gluten free diet, in genetically predisposed people (who carrying the DQ2/DQ8 HLA gene)”. Gluten can trigger your body’s immune response that can then go onto cause this tissue gut damage.

However, this damage is slowly progressive: the longer you have been eating gluten, the worse the damage. Of course, when you have this gluten-gut-damage, you do not absorb your food nutrients very well, and this leads to many other health problems. But, with any on-going gluten ingestion, the gut damage is perpetuated.

The good news is that as soon as gluten is (completely) removed from your diet, the bowel at last has a chance to recover. In children, who have had a shorter time of gluten exposure, their bowel usually recovers very quickly (within weeks their symptoms go away, and within months their gut is completely normal). It is rare for a child to not have complete gut recovery.

The bad news is that as we get older, and have had this gluten assault for a lot longer, our gut damage can be more severe and more extensive. Consequently, you can take a lot longer to get better. You might take weeks and months to begin to feel better and sometimes it takes years for the gut to fully restore to normal.

Of course, if you still eat small amounts of gluten, or your diet is not scrupulously purged of gluten, then this small amount of gluten-toxicity can keep causing you ongoing damage to your gut (and other organs, especially nerves and brain).

To check if your gut has properly healed, you can either have second endoscopy (which is often scheduled about a year after you have started a gluten free diet), or you can see whether or not the tissue-damage-markers (tTG, DGP, and EMA) are coming down. There is a good correlation between blood test results and endoscopy.

The lesson from this: diagnose celiac disease as early as possible, and once diagnosed remain strictly gluten free without exception, lifelong. If you have ongoing gut disease and ongoing symptoms, there may be other things going on and you may need to have other strategies to help gut healing.

Cheers, Dr Rodney Ford, Author of The Gluten Syndrome

The Gluten Syndrome is now available (in next 24 hours) as an eBook (only $4.99) revised new edition, 2011: http://www.smashwords.com/books/view/58338

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

Distinction between CD and other gluten syndromes blurred

Yes, the distinction between CD and other gluten syndromes is now blurred. It has been for over a decade - but now the black & white has become grey.

I was asked about the new or controversial gluten/celiac testing, which had been denounced by a conservative celiac disease high ranking officer.

My thoughts: celiac society people are often closed-minded about anything other than CD. They generally do not countenance Gluten/intolerance/sensitivity. They are drilled by gastroenterologists, and still there is the idea that celiac disease is the only “real” gluten disease.

The other tests: I have no personal experience with Enterolab or Cyrex. They are not available in NZ. However, I know Tom O'Bryan and Ken Fine. Both enthusiastic. Both ethical. Both wanting to help the gluten-problem-sufferers. They have spent their lives in this area caring for people with gluten sensitivity. I hear people say how much they have been helped with a diagnosis by these test systems.

CD official followers are conservative and are hanging on to the status quo. Celiac/gluten testing is about to go through a revolution with the race on to find an accurate and acceptable test for gluten sensitivity. The distinction between CD and other gluten syndromes is becoming blurred (to the concern of CD societies).