(Copyright Dr. Osborne)
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 post on his article.
The longer we are gluten free for the more we find we have niggling questions about Coeliac Disease. For example 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 patients on our sister Healthunlocked site (HU) and those within the Thyroid, RA, B12 auto-immune groups as well. On these HU Community 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 do so by medical professionals? Is this faddy mumbo rumbo? Or is there such a thing as gluten sensitivity without full blown Coeliac Disease? Could it be that gluten causes problems in other auto-immune diseases?
Two of the leading Doctors on Coeliac Disease treatment and research believe that gluten sensitivity does indeed exisit; Dr. Osborne (USA) and Dr. Rodney Ford (NZ) 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 for years despite taking prescribed medicines and doing new age relaxation treatments. Could it be that going gluten free would help them? After all us Coeliacs know that being gluten free can be a real pain in the ass! It’s tricky to read every label, hard to find ‘safe’ places to eat gluten free safely and we lack many of the grains in our diet that protect against diabetes and heart disease. It hardly seems appealing to confirm yourself to a life Gluten Free through choice does it?
Yet Dr. Osborne’s 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 and Dr. Osborne).
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 (42 Euro) for no obvious reason and had continual acid reflux and 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. 5 years later I was finally diagnosed with Coeliac Disease after to going to the Doctor with balance and nausea problems due to what I suspected was an inner ear infection.
So if like many Coeliacs I didn’t display ‘typical’ or ‘classic’ Coeliac symtoms what was wrong with me and why wasn’t it spotted earlier? Well…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.’
TREAT THE CAUSE NOT THE SYMPTOM
Ever had that feeling that your Doctor is treating the symptom not the cause of the problem? Looking back after my Coeliac Disease diagnosis I realised I had and so had my immediate family.
It seemed to me that something odd was going on and Dr. Osborne maybe right…after all what occurs before your villii are flattened and you’re diagnosed with full blown Coeliac Disease? It doesn’t appear from no-where it’s often that the main symptom (as proven by our Health Site’s poll and other research papers online) are fatigue, not stomach problems. It seems plausible 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 (yay - 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. So let’s watch this space at see what her Endocrinologist says at her next check up…
Now, we all know that embarking upon a gluten free diet is not to be taken lightly. 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 is 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 until it becomes mainstream and is taught to medical students.
So what do you think? Does this match your experience? Your reading?
Want to debate this further? Then hop across to our Gluten Free Guerrillas sister Health site here.
Discover more on the original article by Dr Osborne* here.
PS: Yes I know this is an American site and some European fans and Guerrillas maybe sceptical - yet there are oodles of good information and research from Dr. Osborne and his team on CD. So as with any online source read the article and consider who and why they’ve written it and whether it fits with your view or other recognized articles/ research? We think it’s useful as it’s moving the discussion on Coeliac Disease further, let us know what you make of it as well.