Welcome to the TrulyGlutenFree section. This is for people who suspect or have a gluten related disorder (not just coeliac disease!), a grain sensitivity – or who are just not getting well!
First, strap yourself in whilst I explain the problem with gluten illness and how it is assessed and treated medically currently. There are loads of resources at the end too to help you more.
Our knowledge of gluten illness – now officially termed ‘gluten-related disorders’ (GRDs) – has come an awfully long way in the past few years. We now know that gluten illness is a spectrum of disorders rather than all about coeliac disease.
You can have 4 main types:
- Gluten Classical IgE Allergy – rare but does occur
- Gluten Malabsorption – lack of enzymes to break it down, although I don’t think that occurs without a larger gluten problem personally; it’s a clue.
- Coeliac Disease – the autoimmune attack on the villi in the gut and..
- Non-Coeliac Gluten Sensitivity (NCGS) – every bit as serious as Coeliac Disease, an inflammatory and sometimes autoimmune attack anywhere in the body. People with an ‘intolerance’ ie. a delayed reaction to gluten would also come under this category. This is far more prevalent than coeliac disease.
This makes testing for gluten related disorders somewhat complex. In essence, mainstream medicine is very slow at changing and 99% of health professionals still think about and look only for coeliac disease markers. To get an official diagnosis on your health records, it is likely that you need to go through the mainstream coeliac testing process so it’s best to start with that.
However, the vast majority of gluten-sensitives do not have coeliac disease, and even 50% of coeliac disease sufferers do not have the traditionally-accepted markers. That’s why the rate of diagnosis for coeliac disease is so woefully low, and much, much worse for the newly-recognised Non-Coeliac Gluten Sensitivity, since most people have never even heard of it, although since I launched the subject in the UK in 2009, it has gained a lot more traction, thank goodness.
Given a negative coeliac result, most people are told they don’t have a problem with gluten and off they go, completely unaware that the problem is with the testing, not them. They merrily continue to eat a food which, inside, is causing inflammatory and autoimmune attacks.
Coeliacs are not healing on the traditional gluten free diet
It is, in fact, well known that the vast majority of coeliacs do not heal their villi – and therefore continue to suffer the consequences of long-term malabsorption. Most ‘experts’ say it is because they must be still eating gluten. Whilst that may be so in some cases, there are simply too many with continued illness and symptoms for that always to be so. My view is that they are probably reacting to other types of grain gluten (or indeed other fractions of the food) or to known gluten-cross-reactive foods. And most aren’t even aware of that issue, let alone their doctors.
NCGS can be more severe.
The other issue is that there are far more people suffering with the other forms of gluten related disorder, especially NCGS (non-coeliac gluten sensitivity) and, in fact, NCGS can be every bit as severe as coeliac disease and worse in many cases. NCGSs are known to be more sensitive to gluten, to react more strongly to it and to react to much smaller amounts. They also tend to be more reactive to other grains, not just the gliadin involved in coeliac disease, but especially the ubiquitous corn which literally turns up in everything.
NCGSs have a different gene profile to coeliacs quite often and are not even being looked for. This is a big mistake because we know now that NCGS pathology involves two main pathways: inflammation in the body and autoimmunity, both of which stem initially from the damage done by a gluten-zonulin process to the body barriers, causing leaky gut, blood-brain barrier, lungs, skin etc. The most common NCGS issues are neurological, especially chronic headaches, migraine, mood disorders, brain fog and movement disorders eg. ataxia, restless legs etc. Not a coeliac picture that, is it?!
How Prevalent Are Gluten Related Disorders?
In the book Dangerous Grains, authors Braly and Hoggan suggest that NCGS is around 30 times more prevalent than Coeliac Disease [CD] and up to 15% of people, or 1 in 7, are gluten sensitive [GS]. Those are huge numbers! Dr Peter Green, Director of the Celiac Disease Center at Columbia University says that 60-70% of the people he sees who think they have coeliac disease don’t but they are actually gluten-sensitive.
‘Mr NCGS’, as he is known, Prof Umberto Volta, is currently conducting clinical trials on NCGS in Italy. They are following 2,000 patients very closely. He estimates that the prevalence of NCGS is much higher than published statistics say:
“If we take into account that about 30% of IBS cases are NCGSs, then it is around 6% of the population, not 0.6%”.
He says they see double the number of NCGSs than coeliacs. The average age for coeliac disease to trigger is 34, for NCGS: 45. It is sudden-onset usually as the body loses oral tolerance to gluten and is more likely to happen after 40 as the body starts to age and lose control a bit more. More women get CD and NCGS but it is more than four times than in men in NCGS: female to male in NCGS is 4 or 5:1 and in coeliacs that is 2-2.5:1.
Coeliac Disease Is One GRD. Tell-Tale Symptoms and Conditions…
There is a now a recognition that CD is just one manifestation of the autoimmune diseases caused by gluten. Writing in The Lancet in March 2010, Dr Marios Hadjivassiliou and colleagues wrote:
“This disorder [NCGS] is characterised by abnormal immunological responsiveness to ingested gluten in genetically susceptible individuals. Coeliac disease, or gluten-sensitive enteropathy, is only one aspect of a range of possible manifestations of gluten sensitivity.”
In other words, just looking for gluten problems as damage to the villi in the intestines is not enough; other parts of the body and organs can be affected too. In fact, the vast majority of gluten sensitives do not have any gut involvement at all; neurological disorders are far more prevalent. So much so that there is even a call for GRDs to be named neurological disorders, not gut at all. Dr David Perlmutter, author of the Grain Brain book, a research scientist and neurologist gets quite angry with people who dismiss GRDs:
“we have vastly underestimated the effect gluten sensitivity is having on the human race…the link between gluten and neurological disorders is a scientific fact, not a debatable theological point.”
If we consider CD itself for a moment, one of the biggest problems is how few people with it are actually diagnosed. Coeliac UK says Britain is far better than most countries but they estimate that only 15% of CDs have a diagnosis. The rest don’t know that gluten is the reason behind their issues. And that’s just coeliacs. What about all those who don’t have the CD villi damage but who are reacting to gluten as in NCGS? The numbers are potentially huge. It’s crucial that we do get coeliacs diagnosed.
According to the American Academy of Family Physicians, the complications listed for CD include:
osteoporosis, neurological conditions including brain calcifications and epilepsy, continued gut inflammation and consequent problems eg. bowel stricture and obstruction which could come from continued ingestion of gluten or colitis or hyperthyroidism, lymphoma and bowel adenocarcinoma.
Prior knowledge to offset those then would be a great idea. Better testing is clearly needed – and we now have it, which we will go through later.
Tell-tale signs & symptoms
As GS expert Dr Peter Osborne says in his book Glutenology:
“Currently, there are about 300 known illnesses, diseases and conditions connected to gluten allergy, intolerance and sensitivity.”
That’s a lot of illness. In his literature, he cites the most common diseases he says “have been directly associated with gluten sensitivity”:
“Asthma, thyroid disease, eczema, psoriasis, autism, ADD/ADHD, colic, acid reflux, migraine, chronic joint pain, schizophrenia, bipolar, IBS, infertility, chronic constipation, restless legs, iron-deficiency anaemia, osteoporosis, high cholesterol, non alcoholic fatty liver disease (and other gallbladder and liver problems), fibromyalgia and chronic fatigue syndrome.”
I have seen pretty much every one of those, bar schizophrenia and autism as those are not my field, improve on a traditional GF or a TrulyGlutenFree diet. You can see a list of the most common gluten-related illnesses here – check out the top 10; you’ll recognise a lot of them! Dr Rodney Ford, a paediatrician who specialises in children with GRDs advises the following:
“If you or your child has any behavioural, neurological, skin or gut issues including being sick, tired, and grumpy, sore tummies, acid reflux, migraine, other headaches, maybe vomiting, diarrhea, constipation, eczema, rashes, urticaria, abdominal pain or gastroesophegeal reflux, consider gluten sensitivity..”
Professor Umberto Volta advises:
“If you have brain fog, fatigue, headache, arthralgia, myalgia, skin diseases, IBS, chronic anaemias, mouth ulcers, alopecia, Autoimmune thyroiditis, Autoimmune gastritis, nickel allergy, multiple food sensitivity, lactose intolerance or fructose intolerance, consider gluten sensitivity, especially NCGS.”
New understanding needed
Dr Marsh, who invented the coeliac scoring system, is frustrated by the medical profession who, he says, still believe coeliac disease is a disease of the small intestine. It is not, he explains:
“Gluten sensitivity is a spectrum and is more likely an immunological response involving T lymphocytes in the mesenteric system to gluten in ways we don’t yet fully understand.”
He is quite angry at the abuse being made of his own scoring system. He believes it is morally and probably legally wrong to ignore the earlier 0-3 stages of coeliac disease (the definition of CD nowadays is Marsh 4 only; the total villous atrophy). It’s wrong, he says, because:
“we know that symptoms, nutrient deficiencies, especially of iron and bone minerals, dermatitis herpetiformis and even lymphomas happen before stage 3….Antibodies can show up to 7 years before mucosal change. You can get the symptoms and nutrient issues well before that….People with normal mucosa and early lymphocyte involvement with inflammation are at a much higher mortality risk than stage 3s according to studies.”
This is most likely to be because the inflammation level is at its most damaging before stage 3-4. He is mad that we are missing these early indicators because of the focus on late stage disease and says he advises a GF diet even if all blood tests and biopsies are negative and the genes and symptoms are present. He also advises that someone with the gluten genes present but no current symptoms should be monitored over the years because
“you just can’t tell who will develop it and who won’t.”
I whooped at this because I have not heard anyone else corroborate what I have been saying for the last few years and now here we have the main man saying it. I thank you 😉 Neurologist Dr David Perlmutter goes further and says he is:
“annoyed by the persistent ‘old school mentality’ that GRD is a gut disorder; it is not and…we are doing patients a disservice if we do not consider GRD in cases where such a solution could prevent a lot of distress..I am at a loss to know why, despite the amount of research to back it up, it is being ignored…”
Fascinating, isn’t it?
In 2008, I started a blog series to document what I was finding and thinking about all things gluten, and you’ll find those in the TGF category here. This then evolved into the Gluten Plan, which took me two years to research and write. It gives the whole shebang, including how to recognise if you have it, how to confirm it if you need to, a core gluten protocol and a mix and match set of protocols for whatever you need such as malabsorption, leaky gut, inflammation, autoimmunity etc, plus all the diet resources you may need, from TGF (grain and dairy free) to AIP Plus as I call it; the diet I used to heal and tons more.
I was the first to introduce ‘proper’ gluten genetic and blood testing in the UK, before even Cyrex specialist gluten testing became available in the UK (which made my life a LOT easier, thank you to them!). You can read all about Gluten testing here and purchase Gluten, Cyrex and Autoimmune tests here.
After that, I realised people needed some ‘safe’ supplements as normal ones were continuing the problem so another two years’ work produced the TGF Supplements Master List, which you can now access for free in return for using some of the suppliers mentioned so I can recoup some cost with some commission payments!
On top of that, I produced TGF versions of my top plans – the TGF Adrenal Plan, TGF Candida Plan and a TGF Breakfasts book as people needed help with that meal particularly. You can see all the TGF ebooks and facstheets here.
You can read the original introductory article (2009!) I wrote about it here: No Grain, No Pain – Micki Rose. Also read the summary review of the Gluten Summit conference 2014 which has a ton of juicy bits and tips from the experts in the field. You can get that free here: Gluten Summit Review. There’s stuff in there you can show your doctors too. There is, in fact, a great BMJ article you can print out and show to your doctors.
And, so you’re far from alone with it, come and chat on the special closed TrulyGlutenFree Facebook group here – there are some really supportive and knowledgeable peeps on there who WILL help you! I don’t know what I’d do without them, to be honest!
Next, have a look at what conditions and illnesses have been linked to gluten here. And then read how to start reversing gluten illness with my three step approach.