by Richard Cawte
Tales of a Gluten-Intolerant Coeliac – Part 4.
A recent survey by the University of Nottingham* has shown that the instances of Coeliac Disease (CD) leapt by 400% over a 21 year period from 1990-2011. The survey concludes that this is likely due to more efficient diagnosis procedure, rather than an increase in the percentage of the population suffering with CD.
The survey also estimates that, despite recent improvements in diagnosis, only 25% of those suffering with CD are currently aware of it, meaning 75% of sufferers are undiagnosed at this point in time.
This begs two questions:
- How efficient are current methods of diagnosis?
- Could you be suffering from CD without knowing it?
The problems with current methods of diagnosis of CD are that they are generally limited to testing for one or two antibodies (IgG in blood tests and IgE in skin tests) whereas several other antibody reactions can show whether a patient is suffering from Coeliac Disease (see below).
Another problem is that current diagnosis of CD focuses on internal manifestations such as diarrhoea, vomiting and constipation.
In actual fact, the symptoms of CD are far more wide-reaching than this and include external as well as internal manifestations, such as eczema, dermatitis, psoriasis and hives. On top of that, other indicators such as depression, anxiety, asthma, migraines, sneezing and coughing are also largely ignored.
My guess is that this will change in time as the medical profession accepts that, particularly amongst non-melanin prevalent skin types, both CD is far more widely-spread than currently estimated.
For now, however, it’s important for you to know that current testing limits itself (usually) to a diagnosis based on reaction to a prolamine called Gliadin, which is one sub-fraction amongst hundreds that are found with the thousands of different types of protein. This particular prolamine is prevalent in the protein found in wheat.
Given that there are many prolamines found within grains, saying that you don’t have CD if the current tests show negative is a little like casting a net with very large mesh into the sea. Big fish will come up with the net, but thousands of small fish can escape. If you happen not to catch one of the big fish with that particular throw of the net that does not mean that those smaller fish don’t exist!
To answer the second question, therefore, we have to say that there is a high probability that there are many millions of people who currently suffering from CD without knowing it, because current methods of diagnosis are inadequate.
Are you Gluten Intolerant/Sensitive without knowing it?
There’s a further complication in that most research in this area concentrates specifically on Coeliac Disease, rather than general Gluten Intolerance (GI) or Gluten Sensitivity (GS).
Let’s be very clear on this: Coeliac Disease is a manifestation of Gluten Intolerance/Sensitivity, whereas Gluten Intolerance/Sensitivity is an inability to digest gluten (in all its forms, rather than just Gliadin) that can lead to a number of different diseases.
So, not only is it quite possible that you have been mis-diagnosed as not suffering from CD when in fact you do: on top of that, it is also possible that you are GI/GS without knowing it – and that current tests will miss it.
To give you an example: my sister suffered for years from stomach cramps and diarrhoea and was forever being put on different pharmaceuticals to “treat” this. She now has full-blown Crohn’s Disease and Ulcerative Colitis. She showed clear to all CD tests right up until she was 50 years old, when she tested positive. Had she been diagnosed earlier, she may well have avoided years of discomfort and drug-taking. She has still not been officially diagnosed as GI/GS, but has taken the decision to remove gluten (as well as dairy and red meat) from her diet and now has a much better quality of life.
So what can you do about it?
If you have any of the symptoms of CD/GI/GS, such as bloating, gas, diarrhoea, constipation, colic, hives, asthma, eczema, acid reflux, IBS, joint pain, stomach pain etc, you can ask your general practitioner/doctor/licensed health professional to test you not only for IgG and IgE – the two antibodies that form the basis of current diagnosis – but to include tests for IgA, IgM and perhaps IgD.
You can also ask to be tested to see if you carry the genetic markers showing whether or not you are predisposed to suffer from CD or be GI.
Given that most professionals tend to be defensive when a patient requests diagnostic methods that differ from those they themselves have suggested, it may be worth taking matters into your own hands – in a way that cannot harm you.
Why not give your body a break from all forms of gluten for two weeks (better still, a month) and see if your symptoms improve? If you improve, so much the better. If not, at least you will have eliminated the likelihood of gluten being the cause.
Personally I’d cut out dairy too, because there is a lot of evidence that GI/GS can lead to more than one allergy/disease…but we can come to that another day.
*Summary of the survey published in the American Journal of Gastroenterology: http://www.nature.com/ajg/journal/v109/n5/abs/ajg201455a.html
RESULTS of SURVEY:
A total of 9,087 incident cases of CD (coeliac disease)…were identified. Between 1990 and 2011, the incidence rate of CD increased from 5.2 per 100,000 (95% confidence interval (CI), 3.8–6.8) to 19.1 per 100,000 person-years (95% CI, 17.8–20.5; IRR, 3.6; 95% CI, 2.7–4.8). The absolute incidence of CD per 100,000 person-years ranged from 22.3 in Northern Ireland to 10 in London. There were large regional variations in prevalence for CD.