Process of Diagnosis

If you would like to know how the NHS diagnoses Coeliac Disease visit this link http://www.nhs.uk/Conditions/Coeliac-disease/Pages/Diagnosis.aspx

Here I will share with you the process in which I was diagnosed. I will try not to sound as if I am ranting about the NHS because I believe in the good the NHS does, I will however tell you the truth whether that be positive or negative.

I was diagnosed with IBS (Irritable Bowl Syndrome) about 3 years ago and was given prescription tablets to combat the pain – I believe this is a very common misdiagnosis to Coeliac. However once I had been back to the doctors a few times to explain how the tablets were not having an effect on me I was sent for a blood test for Coeliac Disease. Since I had never heard of it before I immediately went home and googled it and pretty much convinced myself I had it since I had all of the symptoms. I received a letter about a week later asking me to make an appointment with my doctor to discuss my results, so I did. To my surprise I was told that my results were negative and I did not have Coeliac Disease and was instead put on different tablets for IBS (Colpermin Peppermint Oil). Now I should have been happy but I just didn’t believe it as I was so convinced that I had Coeliac Disease

Months past and each month I would make a doctor’s appointment to get my prescription of IBS tablets. At my local doctors surgery it is very difficult to get an appointment and is used as a training centre – meaning that I never see the same doctor twice. After seeing 3 different doctors the forth one had another look at my blood results I had 4 months earlier and yes told me that my results has actually shown signs of Coeliac Disease. That doctor then put me forward for a hospital appointment with a Gastroenterologist.

2 months later I went for my appointment (which lasted approx. 10mins), met with a lovely Gastroenterologist who asked me a few simple questions. The questions consisted of my symptoms, anything I wanted to know about Coeliac Disease and explained to me the procedure of a Gastroscopy which would be the only way to know for certain if it is in fact Coeliac Disease. So I was booked in a month later for the procedure.

A Gastroscopy is small operation whereby a long thin tube with a camera is inserted through the mouth and into the small intestine. From this they can then see if there is any damage in the intestine and also take biopsy’s to have tested in the lab. I am not going to lie, it is not the most pleasurable of experiences and you can choose if you would like to be sedated throughout the procedure or not. I opted to go in awake as ironically I am quite squeamish and the thought of needles and oxygen tubes freaked me out even more!

So….another month passed, yes it was a very long and frustrating process but I finally received the results confirming Coeliac Disease. I received the results by a letter in the post and as a form of rebellion immediately made myself some pasta ‘n’ sauce knowing that it would be the last time I would enjoy my favourite meal.

Although I was pleased that I finally had my diagnosis it was terrifying not knowing what to do next. This was were the Coeliac UK charity was very helpful. The website includes lots of information to get you started and there are local support groups available to help you alter your lifestyle. Going to my first local support meeting (Solihull) was very overwhelming especially since I was the youngest person there, but speaking to people in the same situation was very helpful. It was here that I learned of other complications that come along with Coeliac Disease such as calcium and iron deficiency, lactose intolerance and bone problems such as Osteoporosis.

Check out my page on further complications for my experiences after I was diagnosed with Coeliac Disease.

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3 thoughts on “Process of Diagnosis

  1. Interesting story, thanks for sharing. My son gets severe stomach cramping (which seems to occur mostly around when he has eaten a lot of gluten and junk food). He can never gain weight no matter how much he eats and he has mysterious bumps on his elbows which are quite itchy which keep getting diagnosed as eczema or dermatology issue but which never resolves (until we stop giving him gluten. If he eats gluten , the rash flares up)! — He has a confirmed minor wheat allergy (along with diary, eggs and red apple) but his blood test for coeliac disease same back negative. I’ve requested another blood test from a different doctor after my last doctor said to me “can’t we just drop this gluten issue” … (seriously)!?! — Even if this test comes back negative I won’t subject him to any more tests. As his mother I’m certain it’s gluten. His symptoms all but stop when we remove it from his diet.

    • I agree that you should get a second opinion on his blood test as I was told my blood test was negative as well until months later when a different doctor looked at the same results and told me it was positive. If he is getting a rash whilst eating gluten that sounds like an allergy but it could just be stress related rash if he is in pain from eating gluten.
      There are a few other things it could be if the blood test still comes back negative. Have you been told about gluten sensitivity? It has very similar symptoms to Coeliac Disease but first you must rule out Coeliac Disease and Wheat allergy. Check out this article on it http://www.coeliac.org.uk/coeliac-disease/what-is-coeliac-disease/what-is-gluten-sensitivity

      To be honest a lot of Coeliac’s also have an allergy with diary and eggs and as your son also has that it could be related to gluten. If I was you I would try him with gluten foods that don’t contain Wheat (such as Barley and Rye) to see if it is all gluten or just Wheat.

      But remember when being tested for Coeliac Disease it is important for him to eat gluten so that it can be found on a blood test. I hope you find out soon. It can be a very long process but be persistent and don’t give up!

    • I just also wanted to add that some people with Coeliac Disease can get a skin rash which look like small blisters. This is called dermatitis herpetiformis.

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