Misdiagnosis of Coeliac Disease

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Many people with coeliac disease still remain undiagnosed, people suffer in silence without knowing what is is wrong. It is estimated that 8 in 10 people with coeliac disease don’t know they have it. Coeliac disease has over 300 symptoms and most doctors don’t know much about it.

Coeliac symptoms range from digestive issues, diarrhea, constipation, bloating etc., to headaches, brain fog, anxiety, depression, to skin issues, like rashes (dermatitis herpetiformis) or acne. As the symptoms are so vast most doctors don’t pin point it to coeliac disease. Also many of the symptoms come from the lack of nutrients, as due to coeliac disease they are poorly absorbed by the body, due to the damaged villi in the small intestine. Symptoms are endless and one single symptom alone doesn’t point to coeliac disease, but a whole bunch of them together do. The digestive issues from coeliac disease can also be misdiagnosed as IBS, there is no actual test for IBS, so the diagnosis just follows the symptoms and an exclusion process. Many people with coeliac disease also have IBS, so if you have IBS chances are you could also have coeliac disease or you were just misdiagnosed and might have coeliac disease and not IBS. Anyone with IBS should get tested for coeliac disease. To get tested for coeliac disease it is necessary to eat gluten regularly, if you are already on a gluten free diet the coeliac test won’t work.

There are a few different blood tests that can be carried out usually a TtG-IgA test for coeliac antibodies is performed, as well as a total IgA count to look for IgA deficiency, as IgA deficiency occurs more frequently in people with coeliac disease, about 4% are IgA deficient. For those with IgA deficiency other blood tests are necessary, usually a TtG-IgG test for coeliac antibodies. Any antibodies found, no matter if high or low indicate that the person is suffering from coeliac disease. False interpretation of the test results can also lead to a misdiagnosis. Some doctors use old guidelines in which a low antibody count is interpreted as negative or slightly positive, which is so wrong! Any antibodies found means positive! There is no slightly positive, only positive or negative, slightly positive just means positive! Any detectable antibodies indicate that the person has coeliac disease, the antibodies don’t have to be exorbitant high!

For example, I did a 4-week gluten challenge to get tested for coeliac disease, I knew the success rate was only 70% for an accurate test. But as I learned more about coeliac disease I thought my chances of having it was 50/50. Once I started the gluten challenge I had horrible symptoms from gluten and remembered some of the symptoms which I had years before, but didn’t think anything about them, they just came back and I learned more and more about my symptoms, which I’ve had from time to time. The 4 weeks were harder than expected as I was really sick from gluten, after my very first gluten meal I ended in bed quickly after, overcome by tiredness, also the brain fog was overwhelming. At the end of my gluten challenge I thought for sure that I must have coeliac disease. But surprisingly my results came back negative.

Months later I was reading more about dermatitis herpetiformis, a condition linked to coeliac disease, and I was remembering the neurodermatitis I was having every now and then since I was a baby, so I did more and more research and looked at some pictures, which were horrible by the way, they really only show the worst possible cases. But then there was a picture with dermatitis herpetiformis on a finger, and it shook me, it looked exactly like what I have had in the past. Now it all made sense, and I was 95% sure that I must have coeliac disease. I looked at my test results again, it said negative, I looked at the number of antibodies, the number didn’t make any sense to me, so tried to find out more, first time I failed to do so, as I didn’t put the right terms into the search. So this time I put in the right terms and found some scientific study in which they mention the antibody counts and what would be positive and what negative, so I finally had a scale to compare my results to and learned that my result was not negative, as indicated! My antibody count was actually positive for coeliac disease! It was misinterpreted! They falsely told me that I had a negative test! That’s when I knew, I have coeliac disease! It was like, wow, I’ve had coeliac symptoms since I was a baby, and only at 26 I’m finding out what’s wrong!

So yes my antibodies weren’t exorbitant high, I had only eating gluten for 4 weeks, but they were there! And it was clearly a positive coeliac disease test! Do your own research or you will never find out what’s wrong! I found out on my own, that I have coeliac disease, no doctor helped me with that, it was all my own research and learning a lot about coeliac disease and recognizing all of my symptoms.

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