Gluten intolerance or coeliac disease? How do I find out if I’ve got it?
So, what do you do if you think you’ve got coeliac disease?
Well, there are quite a few options.
I’ll tell you what the standard options are and then tell you what I did. I’m
not saying that everyone should do it “my way”; I just want to show you that
there isn’t only “one” way to deal with this problem, although some doctors and
coeliac groups seem to put it that way.
What symptoms do you have?
Anyone who has internet access can find
out in an instant what the “classic” symptoms are. These include diarrhoea and
bloating, as well as smelly gas and stools (this is not a subject for the
squeamish!!!). However, there is a large number of people who don’t get any of
these intestinal troubles, which is what makes coeliac disease such a slippery
customer. Having frequented a German forum for coeliacs for just over a year
now, I have noticed that there are often posts from people who have had
symptoms which indirectly pointed to coeliac disease being at the bottom of
their health problems, but who had no obvious tummy problems. This is where the
diagnosis of coeliac disease becomes so problematic because, if someone turns
up at their doctors complaining that they’re tired and depressed, the doctor
isn’t necessarily going to say, “Ah, well, you’ve obviously got coeliac
disease! Stop eating bread and pasta and decontaminate your kitchen and you’ll
be fine in a year or two!” However, the root cause of the tiredness and
depression could well be malabsorption problems. If your digestive system isn’t
working properly due to a long-undiagnosed case of coeliac disease, you will no
longer be able to make the best use of the food you eat. You might be serving
yourself the most perfect diet ever but, if your villi are flattened, then
there’s hardly anybody working deep in your guts to haul the goodness out of
all that great food. The result is that you may be suffering from mineral and
vitamin deficiencies which can cause a myriad of symptoms. To make matters
worse, the same mineral or vitamin deficiency can produce different symptoms in
different individuals.
Take magnesium deficiency, for
example. One person who is low in magnesium might experience it as night-time
cramps, the old “charly horse” that has you hopping up and down in agony when
you stretch your leg whilst sleeping; in the next person it may affect the
adrenal glands, resulting in dizziness and tiredness, or even producing panic
attacks and anxiety. Another effect low magnesium can have on the adrenals is
that you find it difficult to cope with stress, loud noises and those daily
annoyances that life brings us. You find yourself flying off the handle at the
slightest thing and snap at your nearest and dearest over minor issues that
never used to bother you. Yet another invdividual might have back pain,
neckache and clamp their jaw at night. Magnesium deficiency also affects how we
feel: if you are low in magnesium, you can’t make serotonin, the so-called
“feel-good hormone”, so we end up feeling depressed because we are low in
magnesium.
Other deficiencies which are common
in coeliac disease are iron deficiency, copper deficiency and low B12. Again,
the range of symptoms that these deficiencies can cause is extremely wide so,
if you suspect that gluten intolerance may be at the root of your symptoms,
don’t let your doctor fob you off with Prozac for depression or some supposedly
consoling remark like, “Well, that’s normal at your age!”
If you think you have developed some
physical problems you didn’t use to have, or have noticed any other unwelcome changes, make a note of
these and ask yourself if you always had these problems. They may be
differences in behaviour as well as issues affecting your physical health.
How do I find out if I have coeliac disease?
As I mentioned above, deficiencies in
various vitamins and minerals can have their origins in coeliac disease, due to
the malabsorption it causes. A first and not-too-painful step to discovering
whether this is the case with you would be to have some of these deficiencies
tested. However, there are a few caveats with this one!!!
Some mineral and vitamin deficiencies
can be relatively easily detected through taking a blood sample and measuring
the quantity of the substance in question in your serum. However, this is not
the case with all minerals and vitamins. Magnesium, which is such an important,
yet seriously underrated mineral, is a case in point. Most of our magnesium is
in our bones, some is in our tissues and muscles and the rest – an estimated 1%
of the total – is in our blood. It is very important that intracellular levels
of magnesium remain constant, however, so the human body will extract every
last available iota of magnesium from wherever it can to keep this level at an
even keel. Therefore a blood level may appear to be “normal”, but that doesn’t
reflect what’s happening in our muscles, tissues or bones: they may well be
very low in magnesium, causing pain, cramps and general malaise, but this will
not show up in the blood test.
However, it can be helpful to test
your iron levels and B12 levels. If these are low (more on what “low” actually
means later), then this may be an indicator of an underlying problem, such as
coeliac disease. It must be remembered,
though, that low iron and low B12 can be caused by many different things and
that coeliac disease is only one of the possible factors.
OK, so let’s consider the following
scenario: you’ve got some intestinal troubles and wonder if it’s coeliac
disease. You go to the doctor’s and get your levels of B12 and iron tested and
find out that they’re on the low side, or even very low. What next?
The standard procedure and some major drawbacks with it
If you’ve done some reading about
testing for coeliac disease by this point, you may have come across the
recommendations that you get a blood test done and have a biopsy. At the time
of writing, I can’t recall all the different names for the blood tests, but
basically, one of the aims of the blood
tests is to find out if you have antibodies to the various kinds of gluten
proteins found in wheat, barley and rye in your bloodstream. The standard
procedure is to take a blood sample, look for the antibodies and if your blood
doesn’t have any, then you will be pronounced to be free of coeliac disease or
gluten intolerance. My advice here would be to take this diagnosis with an
extremely large pinch of salt because there are a number of problems with this
conclusion.
Coeliac disease is an autoimmune
disease which causes the body to destroy the villi in the intestines, which are
the little finger-like protrusions that perform one of the most important steps
in the digestive process. However, coeliac disease is a disease which can
progress from one stage to the next. If the disease has not got to the stage
whereby the antibodies produced by the body’s reaction to gluten get through
the intestinal barrier and into the bloodstream, then you may well have these
antibodies in your digestive system but not in your blood. Hence you may be
told that you have tested “negative” for coeliac disease on the basis of the
antibody test, but may still have coeliac disease. The intestinal wall is the
last line of defence in our bodies: it is there to stop unwanted substances
getting into our blood and is meant to be a pretty tough customer. Therefore,
if the disease has not progressed very far, your stomach wall may still be
relatively robust and still able to stop the anti-gluten antibodies from
passing through the gut barrier.
So, a blood test alone is not
infallible.
The next step which is recommended is
the biopsy. This, too, is not the infallible “gold standard” which it is often
made out to be. From my reading so far, what I understand is that about four or
five small tissue samples are taken from the intestine (don’t ask me which bit
exactly) to see if the villi are still present or already totally atrophied
(i.e. not even there). The problem here is that the biopsy can miss those
places where there are already signs of damage so, once again, as with the
fallible blood test for antibodies, you have a situation where you are told
that you are free of coeliac disease when, in fact, you’re not. Those
practitioners who rely solely on such tests are forced to draw the conclusion
that you do not have a problem with gluten and can therefore merrily continue
to eat wheat products, which will cause more and more damage to your insides.
As an invasive procedure (I am not yet
familiar with all the gory details), the biopsy is also not entirely without
danger, regardless of what the doctors might tell you. Biopsies that go wrong
or cause pain are not usually a source of “breaking news” on CNN,
unfortunately, so it is possible to lull people into a false sense of security
by telling them that it is a perfectly harmless procedure. I am sure that it is
in most cases, but do you want to be one of the exceptions?
However, the biopsy does have one
advantage: if it does indeed reveal that you have coeliac disease (I keep
reading about “Marsh 3c” on the German internet forum for coeliacs), then you
will have this officially confirmed and may then feel more confident about
speaking up when eating out or confronted with some food issue that affects you
staying “clean”. If you can get an official confirmation in writing from your
doctor, then you may also be able to take advantage of some small priveleges,
such as being able to carry extra luggage at no charge when flying abroad, or
you may have less trouble asking for a gluten-free menu if you go into hospital
or for a spa cure, for example.
Another way of testing
Another way to get some kind of
semi-official medical confirmation of your condition is to have a stool sample
tested. This method, however, is not accepted by medical orthodoxy as proof of
coeliac disease and your doctor cannot – I believe – prescribe this to you. This
means that any testing by this method will have to be funded out of your own
pocket. In the USA the lab which does this kind of testing is called
“enterolab” and is run by a Dr Kenneth Fine. Here in Germany there is a lab
called “enterosan”, which also does testing of stool samples. I believe that
both companies test for many other gut-related problems besides coeliac
disease.
Here is a link to the German company:
The advantage with giving a stool
sample is that it is not a dangerous procedure. A bit gross and icky and
embarrasssing perhaps, but not
dangerous!!!
So, these are the medical options
available to determine whether you have coeliac disease. However, there is a
simpler option which, however, does cost a certain amount of money and involves
some sustained effort on your behalf.
The simplest method: go gluten-free and see what happens!
And this is what I did. And, after
four or five weeks, my persistent diarrhoea went. Completely. Going to the loo
became a source of pride and pleasure, rather than a desperate race against
time. I could do normal poos again!!! This alone has been enough to convince me
to stay gluten-free and be as diligent as possible in staying away from sources
of gluten. I haven’t been perfect by any means and I am still learning to speak
up and ask what something is made of when I’m at a restaurant. I have my weak
moments when I eat something when I’m out that I know probably has gluten in it,
but I have never allowed a piece of “normal” bread or pizza or pasta to cross
my lips since I took my gluten-free vows on November 22nd 2010.
The disadvantages of the “just-go-gluten-free method”
If you go gluten-free, then any
antibodies that may be in your system will soon disappear. This means that you
can no longer use a blood test or a stool test to see if you have coeliac
disease and would have to undertake a “gluten challenge” to make them appear again.
So, if you want to find out if you
have coeliac disease, you really need to consider all the options and take the
decision carefully.
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