Tested negative but feel the pain?
The majority of persons that go for a Coeliac screening test negative. This happens despite these person suffer from symptoms upon digesting food containing gluten. There are two explanations for these results. But how many health professionals know about them?
Many people contact me after they are sure to suffer from gluten intolerance but tests conclude negative. In a particular email, a 28 year old woman writes how much she suffered from coeliac like symptoms, mainly bloating and cramps followed by diarrhoea after having food containing gluten. Her doctor requested a coeliac screen and when she went back for her results, the doctor told her to go home and make herself a nice cup of tea and a sandwich because the results were negative.
She was happy at the news, and indeed she went home making herself a cup of tea and a nice sandwich which she has not had for many weeks. However, moments later the dreaded symptoms came back and was ill for two days missing her work!
So what did go wrong?
For three years, between 2001 and 2004 I worked in the immunology department of one of London's University Hospitals. Weekly we performed coeliac screening on around 80 patients referred to us by their doctor following a protocol to narrow down the patients with possible gluten intolerance.
Surprisingly it was only 1-2% of them tested positive, this despite these patients experience coeliac like symptoms! So how could this be?
A false negative result is possible to occur after the patient testing for the screen had gone for several days on a gluten free diet. This causes the immune system to slow its antibodies production down to normal levels. Since the tests rely on antibody detection the end result will show 'normal levels', hence classified as negative.
Avoiding a false negative result.
To obtain the real status of the condition it is necessary to consume food that contains gluten for a week before blood is being taken for the test. This way, if truly having Coeliac Disease there will be enough time for the immune system to produce antibodies. The presence of these antibodies determines the diagnosis of the disease. Abstaining from food containing gluten will stop the immune system producing the antibodies needed for detection in the test, and people intolerant to gluten will end up as being told to be negative.
Unfortunately this may be a painful solution, but it is recommended for accurate diagnosis. One must take care in the quantities of gluten taken not to cause excessive symptoms but this varies from person to person. More importantly is not to subject children to aggressive consumption of foods with gluten and it is vital to to speak to the doctor about it first. If the test is negative, then it would be understandable to declare being free from Coeliac Disease
The same thing applies to those who are heading for a biopsy to confirm Coeliac disease. If gluten had been out of the system for even a short time, the villi of the small intestines regenerate readily and hence, the biopsy will only reveal healthy villi. Once again a false negative result.
Non Coeliac Gluten Intolerance
|The structure of gluten consists of long chains of proteins with a high molecular weight (HMW)|
Many times when a person is screened for coeliac, despite taking all precautions mentioned above, tests still indicate that the disease is not present. This despite that these persons suffer from symptoms upon digesting food containing gluten. This is very interesting or perhaps confusing to many. But put simply , this person may be Non Coeliac Gluten Intolerant (NCGI). It is estimated that around 15% of the world population is NCGI as opposed to less than 1% of Coeliacs. Gluten consists of many long elastic chains of proteins lined along each other, giving it the characteristics of a dough. Not all of them cause Coeliac disease, but some can cause irritation to the small intestine, enough to hinder the cells of the lining from enzymes production to break down foods. Symptoms are similar to those of food intolerance and more details can be found in the food intolerance pages. To confirm if you are NCGI do an elimination diet. Avoid all gluten food for at least two weeks and then introduce it. If symptoms return, and previous tests were negative or inconclusive then you know that you are NCGI. NCGI suffer from similar symptoms of food intolerance and Glutenzyme that is capable of breaking down gluten proteins can be the solution for a normal diet reducing or eliminating symptoms associated with NCGI.
If coeliac screening is negative, despite taking all precautions and the eliminating diet proved to be NCGI there are two things you can do, depending how severe your intolerance is. For the most severe, perhaps it is better to eliminate gluten from their diet. Glutenzyme can take an important part in the diet because it can break down any gluten that is hidden in foods. For less severe NCGI they may find out that by taking a capsule of Glutenzyme before having food containing gluten may solve all the problems. See Glutenzyme.