Welcome to TrulyGlutenFree. Just to be clear from the outset: we are not into the traditional gluten free diet and, actually, think it may be harming people with some types of gluten sensitivity. Ooh, controversial.
I am a coeliac who got worse on a traditional gluten free diet. I am also a natural health consultant who looked into why.
The TrulyGlutenFree site is my look at the newly-coined Gluten Related Disorders and to help you determine how to test properly for them, what diet might be needed, since many do not heal on the traditional gluten free diet according to statistics and clinical experience, and establish how to heal your specific case effectively.
This site is particularly for you if:
- you have been diagnosed with gluten or grain sensitivity, intolerance or allergy and want to know what to do for the best
- you suspect you have some issue with gluten or grains and and need to know how to confirm it, then what to do
- you have tested negative to coeliac/celiac disease, but suspect that is wrong and want to know how else you might find out if you are coeliac or have non-coeliac gluten sensitivity
- you aren’t getting better on a traditional gluten-free diet
- you just feel ill and no-one can get to the bottom of why (I have found NCGS is often at the heart of the issue with people who have tons of health issues, seemingly not connected; your immune system just cannot pick up.)
- you have or are at risk of an auto-immune disease (gluten is thought by some to be the one common denominator in ALL auto-immune disorders eg diabetes, rheumatoid arthritis etc).
There is gluten in ALL grains (not just wheat, barley, rye and oats). Currently, we only look for 33-mer gliadin in tests. Gliadin is just ONE type of gluten and 33-mer is just ONE type of gliadin. If you happen to be sensitive to that particular type of gluten, great. If not, you are told there is no problem. There is, in fact, gluten in every grain. Why should gliadin be the exception?
Some people can be sensitive/intolerant to these other gluten types instead of or as well as having coeliac disease so even if you test for gliadin antibodies, it’s more than likely you won’t find the problem. Corn, in fact, is a very common culprit and, in percentage terms of the amount of gluten it contains, is second only to wheat. But what do you think practically all so-called ‘gluten-free’ food is based on? Right: corn. My view is that the current ‘gluten free’ diet should be termed a ‘gliadin’ free’ diet; it is certainly not trulyglutenfree. Ooh, controversial!
There are several types of gluten illness. Broadly-speaking they fall into four categories. You can have a classical allergy to gluten, you can have a problem digesting gluten down (the enzyme problem), you can have Non-Coeliac Gluten Sensitivity (NCGS) and you can have Coeliac Disease (CD). Most people think that coeliac disease and gluten sensitivity are the same thing; they are NOT. You can even have all four at the same time!
Gluten illness is largely a genetic problem; you either are or aren’t genetically sensitive to gluten. If you are, Coeliac Disease is likely to be just ONE of the manifestations of this gluten problem; there are hundreds of others and none of them include villi damage so you won’t confirm it by biopsy. Most gluten illness is somewhere other than the gut. If you are genetically predisposed, it is a matter of time before the damage is done if you continue to eat gluten; that’s why most gluten illness starts to show at age 35-45. Your doctor will only look for the coeliac genes: DQ2 and 8, but experts are now finding other genes indicate NCGS.
You don’t have to be eating gluten to test for gluten intolerance or sensitivity. You can now do a gene test via a cheek swab which is highly predictive of present problems or future predisposition to gluten problems. It can’t tell you definitely have it, but you can put the genetic predisposition and your symptom picture together and draw an obvious conclusion. Not everyone who has the genes will develop the problem, there is usually a trigger like stress, antibiotics, meds or whatever.
Some experts think most auto-immune disorders have gluten as a common denominator. In fact, people with type 1 diabetes and gluten sensitivity share the same genotype!
Tests like gliadin antibodies, transglutaminase antibodies and even the gold standard biopsy are far from infallible so a negative result does not mean no problem. Villi damage can be patchy and a some tests only show a problem with total villous atrophy. What about the earlier stages? Do we have to wait to get more ill before conventional testing shows us what we already know?
You don’t have to have ‘typical’ coeliac symptoms to have coeliac disease. In fact, many experts are now calling for more acknowledgment of the fact that most coeliacs are not suffering gut problems and weight loss. Some are asking that people with conditions like osteoporosis, for example, should be routinely tested for CD, and I agree with that. The most common symptoms are neurological, especially brain fog and chronic headaches.
Currently, the only treatment approach for Gluten Related Disorders (GRDs) is avoidance of gliadin-rich grains: wheat, rye and barley. That’s fine if you happen only to have a problem with gliadin. We already know that 50% of coeliacs don’t have the gliadin antibody but react to other peptides of grains.
The new understanding now gaining ground (thank goodness, since I have been harping on about it now for over 4 years!) is that some people need different diets. Some are fine on traditional gluten (gliadin) free diets, others need to remove all glutens (that’s grain free), some need to avoid foods that are cross-reactive with gluten, and still others with severe cases need a much more complex approach to healing to control barrier hyper-permeability, inflammation, autoimmunity, malabsorption etc.
This site is my attempt to give you options other than the standard gluten free diet approach.
A bit about me and how we go to this site..
As a clinical practitioner specialising in – and suffering from – allergy and intolerance, coeliac disease and non-coeliac gluten sensitivity, over the last 20-odd years, the most common type of questions I got asked were:
Q: I feel ill all the time, I think I am reacting to gluten, yet my tests all come back negative. What is going on?
Q: I am coeliac and don’t eat any gluten but I am not healing and still feel ill. Why?
Q:I have tons of food allergies/intolerances/sensitivities/a leaky gut/low SIgA/gluten sensitivity/coeliac disease/can’t eat this, that or the other. How can I find out what is going on, become less sensitive, stop developing more and start getting better?
At various stages, all three were me too. So, having stopped seeing patients now, I have set out to answer those questions with this site. I was stunned when I started looking into the reasons why coeliacs don’t heal, just how unreliable the current tests are, what other forms of gluten illness exist (which are far more common than coeliac disease) and what damage gluten causes, particularly the link between multiple intolerance, inflammation and auto-immunity.
I started this site originally to record my findings about gluten and gluten-related illnesses. After thoroughly searching for and poring over the research available, I came to the conclusion that we needed an effective treatment programme to redress the damage done by gluten rather than to just avoid traditional gliadin gluten grains.
Most of us gluten-sensitives have multiple intolerance, leaky body barriers, not least the gut, inflammation and malabsorption. Importantly, we are also at greater risk of auto-immunity, heart disease, osteoporosis, diabetes, you name it. Just avoiding gliadin didn’t seem to be enough. For me anyway.
So, over the past few years, I first developed the TrulyGlutenFree approach – grain and dairy free diet and supplement protocol. A lot of people did well with that, but a subset of people needed a stronger approach so I invented the Barrier Plan, which focussed on lowering inflammation, repairing hyper-permeability caused by gluten and calming autoimmunity.
Recently, this has evolved into the Gluten Plan, which now gives a very detailed, deeply-researched overview of gluten testing, diets and treatment, with a sort of pick & mix approach to maximise flexibility. That’s because the one thing we did learn is that people with GRDs have myriad symptoms and issues ranging from one end of the spectrum to the other so there is no ‘one-approach-fits all’. The Gluten Plan takes you by the hand and leads you through how to establish your own healing programme rather than shoe-horn you into one that might not fit.
Either way, I truly hope the site helps you. If you get lonely, come and chat with us in the special TGF Facebook Group.