Gluten Sensitivity: Fact or Myth?

[FionaGFG]

I've been wanting to write a post on this for a while, so thanks to Dr. Osborne's Glutenology site for his excellent post on this recently which reminded me to do to a quick blog.

Do you know of relatives that have similar Coeliac symptoms to you yet their blood tests/ endos have come back negative? Do you ever think back to when you were you younger and tick through as list of common diseases or problems? e.g. Asthma, Psoriasis, allergic rhinitis, eczema, glandular fever, random aches and pains? Well if so then this post maybe of interest. I've spotted similar concerns amongst Thyroid, RA, and B12 auto-immune patients on the sister Healthunlocked sites. Despite further testing many people are told they don't have Coeliac Disease. So why do many insist on going on a gluten free diet or are recommended to my medical professionals? Is this faddy mumbo rumbo? Or is there such a things a gluten sensitivity without full blown Coeliac Disease?

Two of the leading Doctor's on Coeliac Disease treatment and research believe that gluten sensitivity does indeed exisit; Dr Osborne and Dr R, Ford regularly blog about such topics. The recent post by Dr Osborne sheds more light on this topic. I've summarised his post and included key extracts from it below for a speed read for many of you....

GLUTEN SENSITIVITY EXISTS...

The argument Dr Osborne makes is that,

'Lab tests have traditionally focused on diagnosing celiac disease. This has created a proverbial No Man’s Land for those patients who react to gluten differently. Because the labs come back negative for them, they are told to continue the consumption of grains, and they are told not to worry about gluten because they don’t have celiac disease.'

Like me I am sure you have friends and relatives who may have other auto-immune diseases like Thyroid or conditions like 'IBS' who continue to feel sick as parrots for years despite taking prescribed medicines and doing new age relaxation treatments. Could it be that going gluten free would help them?

The argument is that some people exhibit 'direct auto-immune' responses i.e. Coeliac Disease as the result of gluten intolerance whereas other people exhibit 'indirect auto-immune' responses i.e. weight gain, hormone problems, fatigue, etc as per the 'HYDRA' picture (copyright Glutenology).

If we think back to how we felt years before our own or our child's Coeliac diagnosis I suspect many of us will tick a number of those boxes: acid reflux (tick), fatigue (tick), hormone problems (tick), weight gain (tick). Indeed I know personally that once I had ballooned to a size 16 for no obvious reason and had continual acid reflux, run down problems it was only then that I attempted to look at my diet after 'traditional' medicines and creams for allergies hadn't worked.

Dr Osborne suggests that:

'Gluten sensitivity manifests in hundreds of different ways. It has been called a multi headed HYDRA of disease. Each head representing a different symptom or disease. (For those of you who don’t know what a Hydra is – look at the picture above) Drugs are typically used to treat the symptoms of gluten induced disease, but unfortunately, they do not correct the core of the problem. So for every symptom a medication is used to treat, several new symptoms arise. (a Hydra will sprout two new heads for every head lost) Thus a person goes undiagnosed for years because doctors are chasing symptoms instead of addressing their root cause.'

Ever had that feeling that your Dr is treating the symptom not the cause of the problem? I have and so have my family and I know with two parents with many of these symptoms (and a sister that has CD), that something iffy is going on. It seems to me that my parents (who have appeared negative in both Coeliac blood tests and endoscopies, yet continue to experience stomach problems and other issues) may have Coeliac Sensitivity. After months of harassing both parents to give up gluten for a week to see if they feel better I have managed to persuade my Mum to (the pester power of children works no matter how old you are!). Whilst she knows her Thyroid and Pernicious Anemia (auto-immune bingo!) will persist she's already noticed on day 4 that she's less tired, less bloated and feels less foggy headed. Now we all know that embarking upon a gluten free diet is not to be taken likely. However, I'm keen to see how this home grown experiment pans out.

As Dr Osborne illustrates those who may be gluten sensitive are currently in a 'no-mans land'. There's still no official line on treatment for them in many countries and testing is still evolving. Yet anecdotal feedback from patients and new research continues to illustrate that some groups especially those with other auto-immune diseases may benefit from a gluten free diet e.g. Diabetic patients, Thyroid, Arthritis, Osteoporosis, Lupus, Sjogren’s syndrome. More research is needed and of course it depends on your perspective - what came first - the auto-immune disease or gluten sensitivity? From research I've read on CD and gluten it seems there is something in Dr Osborne's theory on the many headed Gluten Hydra this yet it undoubtedly needs to be explored further.

FEEDBACK:

So what do you think? Does this match your experience? Your reading?

LINK: glutenfreesociety.org/glute... pr

* Yes I know this is an American site and yes they are selling testing kits, despite that there are oodles of good information and research from Dr Osborne so as always read the article and consider who and why they've written it and whether it fits with your view or other recognized articles/ research.

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Coeliac Disease runs in my natural fathers side of the family and my elder sister has had two endoscopies with biopsies and was not diagnosed CD but has the symptoms.

[FionaGFG Administrator]

Interesting Tony - it does make you wonder what and when it appears. It is tricky when relatives seem to have all the Coeliac symptoms yet don't show positive during tests. Plus you also hear of people having had a number of endoscopies and only showing positive late in life? Maybe it developed late or maybe it's hit and miss where they take the biopsys from ?

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celiacdiseasecenter.columbi...

[InVivo]

Did you know, that a diagnosis of Coeliac disease requires total villous atrophy, but this is the end stage of the disease. By the time you have total villous atrophy, you have had the disease is the latent or developing stages for years, if not decades. Did you also know, that there are roughly 60 protein fractions from gluten that your body can have an immune reaction to, yet we only test (currently) for 1 or 2? Why is that?

There is a new lab in the States, that Gluten-forward doctors such as Vicky Petersen and Tom O'Bryan use that tests more comprehensively for your immune system reactions, but as yet, there's nothing similar available here in the UK.

Coeliac Disease, is essentially where the immune system's reaction is present in the gut, but as you point out, there are many people where it manifests in the brain or nervous system, thyroid, liver, hormone systems.....The list is pretty long. Gluten sensitivity, the name given to the immune reaction anywhere else in the body can, and does, affect every and any tissue in the body.

There is a large, and growing body of medical evidence for this phenomena, and it is now very well recognised in the States, here in the UK however, we seem to be slightly behind the times which makes it very hard for the people who have symptoms, are being tested in an inadequate way and told they're fine.

Tony, if your sister has symptoms that resolve or improve if she comes off gluten, then clearly she should not be eating it. Please don't let her wait until she's sicker and develops major problems before something is done about it.

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My big sister (I mean older) is as free from gluten as I am, now I am weaning her off the "GF" term as it is not relevant to us.

Many on another message board who stick rigidly to the "GF" diet tend to complain about IBS a lot and they just do not make the connection with the gluten in the "GF" diet.

[FionaGFG Administrator]

Mmm interesting Invivo! I've also read that CD is the end stage full blown reaction to gluten intolerance where it causes an auto-immune problem.

I will be waving your note in front of my long suffering Mum who has been told she has IBS (plus Thyroid, Pernicious Anemia, Psiorisis). Despite an endoscopy biopsy and colonoscopy and Coeliac symptoms (fatigue, constipation, stomach pains, bloating), he is convinced she has IBS and even denied that CD is hereditary. So..I'm hoping the gluten free diet helps her symptoms.

As Tony states perhaps going truly GF for many Coeliacs would help. I find I tend to feel better minus any GF processed bread yet sometimes a craving for scrambled eggs on toast just gets the better of me! I hope that less than 20ppm helps other coeliacs eating Free From items.

I look forward to learning more about the USA research. Roll on the UK catching up!

[kaspa]

This is all interesting stuff and makes me ponder..

It seems there are many issues facing our health systems. such as unprecedented obesity and diabetes, unexplained OA and RA, and many people are suffering from head, muscle and nerve pain as well as fatigue and a plethora of digestion problems.

Given that there is little other than the food and drink that we put into our mouths daily that can impact on our body...... the cause in many many cases could be what we eat and how we react to it.

We consume the gluten and the new Super Wheats at virtually every mealtime and snack on them too ( I know I did). And some of us are ill, very ill.

And some have a gold standard confirmed diagnosis but many don't.

And there still seem to be many many unanswered questions. And much of the medical profession seem to be unaware and not listening.

And if big pharma are all out researching for drugs to "treat" each of these diseases than we might all be waiting for a long time (especially since many of these lifelong diseases seem to have no known causes but we still continue to suffer from the symptoms). But there is precious little being done on cause or prevention.

But if the answer is in what we consume then we alone can "feel" it (though others may also see/measure the effect it has on us) and we can and do take action to reduce our symptoms. And we are criticized?