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Many people have heard of Coeliac disease (Celiac in the US) and may even know someone who has it, but many people may not be aware of the life threatening consequences that may come without an accurate diagnosis, or strict adherence to the diet having it dictates.
In 2008 NICE, the advisory body to the government, instructed GPs to make a point to test for the condition in all who present themselves at the surgery with irritable bowel symptoms. I welcome this, as it will pick up many, who in previous years, had the IBS diagnosis, when in reality their symptoms were being generated by gluten intolerance. Testing for the disease is now a vital part of the work up which leads to a final diagnosis of IBS, so hopefully no cases will be missed. This is important as there is an incidence of 1 in 100 of the disease in the UK, and an estimated 2 out of 10 of these cases may be going undiagnosed. In many cases it mirrors the situation with type 2 diabetes, which may go undetected for many years as symptoms bubble under the surface, and are put down by their sufferers to lifestyle or advancing age.
So what is coeliac disease and how dangerous is it?
The disease is an autoimmune condition, which literally means the body attacks itself in reaction to an agent it believes to be foreign - in this case - gluten. When a person who is coeliac eats gluten they will suffer symptoms, which may manifest themselves in subtle as well as in obvious ways. Yes, certainly they may have gut issues such as diarrhoea or bloating, but the inflammatory response may also trigger joint pains, a feeling of ill health, mouth ulcers, vitamin deficiencies, particularly B12 which is a vitamin needed for energy and blood production, and in some cases there may be a rash called dermatitis herpetiformis. Young children who have the condition may not grow at a normal rate, and may have predominant bowel symptoms which are quickly noticed by adults who perhaps change nappies. Adults may lack the bowel symptoms, which is why they may not suspect the condition in themselves at all. It can manifest in the sufferer itself purely by always creating a sense of overwhelming tiredness. It can strike at any age too, so awareness is the key to catch it early.
Gluten is found in wheat, barley, and rye and some coeliacs also react to oats. After diagnosis these foods must be avoided for life. If they are eaten the chance of bowel cancer increases. It isn't a choice to cut down on them - lifelong avoidance is essential to prevent complications. The condition causes anaemia, osteoporosis and many other outcomes which is partially what complicates the clinical picture as patients can present with these ailments which may not be connected with the root cause. It is little known that infertility and miscarriage can result from undiagnosed and treated coeliac disease.
So why test yourself for the condition? All About The Biocard Celiac Test.
Personally I am quite keen on some home tests, and not on others which I think can generate excessive worry. In our house the items I use reflect what I was taught in my nursing training. I have a blood pressure machine, and glucose testing strips which I use to keep an eye out for hypertension and diabetes respectively in the family. Other than that I don't have a store of testing kits for this and that, as I think the doctors is the place to go if you suspect you are ill or have worrying symptoms. However there is one testing kit, The Biocard Celiac Home Testing Kit, that I do think was worth using prior to the NICE guidelines coming into being two years ago. I have ME/CFS and it does affect the gut in many ways in varying degrees of severity. I have used this test twice in the last few years to satisfy myself that the symptoms I had were indeed not due to the insidious development of coeliac disease. I have also used the test to check my husband, as his mother died from bowel cancer, which can in some cases be due to the condition being untreated for many years.
It is interesting to note that in 2006 and 2007 the support organisation, Coeliac UK, took the home testing kits to the House of Commons to raise awareness of the condition. According to a report in the British Medical Journal which studied 2690 children and 120 adults, the results proved that the home blood test for coeliac disease was as accurate as hospital laboratory tests. The test was first developed in Finland.
I think since the NICE guidelines came in I feel less strongly regarding recommending this test. I think that paying for the test, which you can obtain on the NHS, is no longer as necessary, but many people still prefer to check their own health for themselves, and of course, as I explained earlier, you do not need to have predominant bowel symptoms to be suffering from this disease, so the test may be helpful for those without all the clinical symptoms in abundance.
It is also worth saying that the test is highly accurate, and is set at a fair price of around £19.99 and it can be obtained from Boots and many on-line chemists.
It is also important to point out that if the test is positive you must go to the doctor, as you will be referred for the gold standard test for the disease which is a biopsy of the stomach lining. This is really important as the gluten intolerance damages the lining of the stomach flattening the little structures called villi, and an assessment of the severity of the condition can also be made using this biopsy. This is done in a hospital out patient clinic under light sedation. You must not stop eating gluten until the final diagnosis is made, as this is the treatment you will be given following diagnosis, and as a result healing of the stomach will occur. If you eat gluten before the test the result may be false, this also goes for the blood test too. I make this point because many people these days follow "free from" diets, which are so popular and may have already embarked on such an eating plan to combat the symptoms of the very disease they have which is the cause!
So if you purchase the test you can be reassured that in a few minutes you will know one way or the other. There is no sending the sample away, the test involves a small pin prick of blood and is relatively painless. You just need to make sure that you are organised before you start as there are several components within the test to familiarise yourself with. The testing kit looks for IgA tissue transglutaminase antibodies, proof that a coelic condition is present.
The test result is similar in many ways to a pregnancy test, but uses blood rather than urine and the steps are slightly more complicated. It is easy to read as a positive result yields two lines - a negative shows only one which is the control. The sample of blood is gained by using a small sterile lancet and this, I found to be almost pain free.
The kit contains
1 aluminium pouch containing a test card and a plastic filter tip
1 sterile automatic lancet
1 coloured plastic vessel with a 10 microlitre glass capillary tube inside
1 alcohol swab
1 clear vial containing 0.5 millilitre sample dilution buffer
1 package leaflet with full instructions
I found the instructions to be very clear and easy to follow. I just recommend that you set up everything clearly in front of you before starting the test, as after you have gained the blood sample it is more difficult to fiddle about with vials and solutions.
To start you prepare the vial by opening it. This contains the buffer solution. You can then store this is the little hole which is handily placed in the carton. You then take the test card and the plastic filter tip out of their pouch, and put the card flat on a clean surface.
The having collected your blood sample from your finger tip using the lancet provided, you open the plastic vessel and inside there is a capillary tube which you slowly fill with the blood from your finger prick. I found this to be the trickiest part, as you seem to need lots of dexterity for this, so I found it was helpful to have my husband to help with this.
You then place the blood filled capillary tube into the clear vial containing the buffer and close with the plastic tip. You then invert the buffer vial several times until all the blood is mixed completely with the buffer. You then hold the clear buffer vial over the round sample hole on the card labelled S and place three drops onto it. You then leave the test for 5 minutes to read the result, and again after 10 minutes to check the result. The result is very easy to read, and there is no ambiguity about it - it is either positive, in which case you need a doctor's appointment, or negative, in which case it is highly unlikely that you have celiac. However, I must stress that if you have symptoms you must still go to the doctor to discuss them as there could be many other causes for them.
In conclusion I would say that my recommendations for this test have changed in the last two years. Certainly then I would have said it was well worth using. Now if you have irritable bowel symptoms I would say it should be covered by the GP, as a blood test he or she will request to eliminate coeliac disease as a possible cause of your aliments. Of course if you have IBS which was diagnosed many years ago this test could offer reassurance.
Finally and most importantly if you have any of the symptoms below don't delay by purchasing this test as they are possible early warnings of bowel cancer or other serious bowel conditions. This is especially important if you are over 50.
- Weight loss
- Alternating diarrhoea and constipation
- Passing blood from the back passage, especially if it is mixed in with the stool. Dark or tarry stools can also be a warning as they may contain older blood which originates from higher up in the gut
- Tiredness which can be due to anaemia.
I found the test to be easy to use and provided the reassurance I needed at the time I used it. I think it may have its place in testing at home, as long as it is used in the right situation for the right reasons. It has accuracy on its side, which is important, but prompt attention to the result should it be positive is of paramount importance, as you'll need expert help from a gastro-enterologist and dietician support to manage the condition which is life-long. As it often runs in families other members should be tested as well as there is thought to be a genetic involvement in some cases.