Coeliac Disease – A Long Way to Diagnosis

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Coeliac disease is a highly underdiagnosed autoimmune disease, it has more than 300 symptoms and for most people it takes years and many doctors to finally get diagnosed.

Human Hand Near Brown Grains at Daytime

Most doctors don’t know much about coeliac disease, that is why they don’t think about ordering a simple blood test for coeliac disease. Many people suffer a lot until they finally get the diagnosis coeliac disease, having to quit gluten doesn’t seem that bad after having suffered so much for years, it is a relief to finally have found a cure, which is: not eating any gluten for the rest of their life. Coeliac disease symptoms can vary from skin conditions to gastrointestinal symptoms to psychological symptoms like anxiety and depression, it also effects the cognitive abilities and concentration, the symptoms are endless. Coeliac disease causes severe vitamin deficiency, so vitamin deficiency can cause so many different symptoms. Coeliac disease is often misdiagnosed as IBS (there is no actual test for IBS), but fact is many coeliac also have IBS, everyone who has IBS needs to get tested for coeliac disease, but most doctors don’t know that. If you have one autoimmune disease you are more likely to develop another one. Coeliac disease is not a rare disease, it is actually quite common, it is estimated that 1% of the population has coeliac disease, but 80 to 90% remain undiagnosed. If they would do a huge screening, perhaps it actually would be much higher than 1%. I also read that in some country in the older population 4% had coeliac disease, but then is coeliac disease suddenly developing at some stage in their life or are they born with it? The Genes for coeliac disease have approximately 30% of all people, but that does not mean that they will get it, but only they have the possibility of getting it. Which means if you have a relative with coeliac disease you are also at a greater risk of getting it. Which brings me back to the question: Are we born with it? Maybe, some certainly are, some might not, no one knows. For many coeliacs it takes decades from symptoms to diagnosis, it might start with little things that get more and worse over time, maybe just an occasional headache or skin rash or acne.

Adult acne is not normal, don’t believe doctors when they tell there is nothing you can do. Any intestinal issues, including coeliac disease, can cause acne, get tested! Any skin rash can be caused by coeliac disease, but a dermatologist is not the right doctor for that and most likely won’t have a clue. Dermatitis herpetiformis is a skin rash which is caused by coeliac disease, also often misdiagnosed as neurodermititis “just put some cream on it” is not a cure! If it really is dermatitis herpetiformis, then you actually have coeliac disease and only a gluten free diet will work.

I was misdiagnosed as a baby of 8 months, had horrible rash behind my ears, all red and scratched up. Later in life I had some neurodermititis on my hand, which I thought was just neurodermititis… Later I found out it actually was dermatitis herpetiformis, I was reading a lot of different stuff about coeliac disease, and I was reading about dermatitis herpetiformis, I looked at pictures and thought, no I didn’t have something like that, than there came up a photo with a hand with dermatitis herpetiformis, and I was shocked it looked exactly like what I’ve had. Many pictures on Google show those rashes in extreme forms and not the average mild cases, so if you see a horrible picture and think you don’t have that, think twice they only show the worst possible cases, the abnormal ones…
Honestly there should be huge coeliac screenings, like the whole population, there are rapid blood tests, they aren’t that accurate but it would still help a lot. Everyone with a relative with coeliac disease, or IBS or any type of symptoms should get a proper blood test done anyway. This way they would find a lot of undiagnosed coeliacs.

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