About me & diagnosis, or should I say not!

my road has been a long one like many who suffer with Coeliac Disease, this is my story.

after having my youngest son 22 years ago (I had him by C Section) I became very ill. I put it down to being an older mum (37) with an autistic son of 10 at that time, so life was stressful!

I started working part time when my youngest was 2, but was so very tired and was struggling being able to leave the house in the morning to take kids to school, we most of us know the dreaded D and the crippling pain! (I have always said the pain resembles the first pains of labour!) I had seen my doctor, but got the normal reply "its IBS, you have a stressful life" how many of us have heard that!!

anyway, 9 years down the line, I was in town with my sister and i just passed out! Felt so ill. My parents picked me up and i made appointment with my doctor as soon as i got home. She did some blood tests. The day after I had the tests done she rang me and told me to go to A&E immediately!

my heamaglobin was 6! I had a blood transfusion and was reprimanded by the consultant, I am sure he thought I had made myself ill! I was very thin at that time, but no one put 2+2 together.

in that following year after the transfusion my blood count was still going down so my doctor sent me for a endoscopy to see if there was any bleeding, I also had multiple scans of all my organs. All of these came back fine.

NO BIOPSY WAS TAKEN FOR COELIAC!!

A further 2 years went by with blood levels still falling, bad stomach etc., well, we know what we suffer don't we?! I honestly thought I was dying of some kind of blood disorder by this time!

I went to my doctor again, another blood test BUT THEN she suddenly had a brain wave! "I wonder if you have Coeliac Disease?" At last! Maybe an answer? She told me to go gluten free from that day to see if my blood count went up! No blood test first to see if it showed up! Just straight on to GF.

well, we know the answer don't we?! If only I had known, don't go GF till all the tests are done. I felt so much better within a couple of weeks. But the doctor then said if you want it diagnosed properly you will have to eat gluten again! I couldn't do it!

now 22 years later I have lost all my teeth and have osteoperosis due to malabsorption in those 13 years it took for the doctor to realise what was happening!

yes I am slightly angry, but there is nothing I can do apart from trying to spread the word. When someone says they have IBS I say get checked for Coeliac Disease and DONT go GF before all your tests are done!

it changed my life completely, I still struggle even after all this time, so don't be too hard on yourselves, its bad enough people thinking we just have an allergy!

I met a lady once who had been a nurse in the 1940's. She said she watched people die because they just didn't know what was wrong? This isn't an allergy, always push your doctor for answers, always question them, they may be doctors and we respect them, but they don't know everything! DO YOUR HOMEWORK!

love & good luck to you all X

michelle

2 Replies

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  • Sorry to hear about your health problems, Michelle. NICE guidelines now state that a test for Coeliac disease should be done if an adult presents with IBS. The advice on this, and the necessity of carrying on eating gluten, seems to be taking time to filter down to the average GP.

    Unfortunately, thirteen years seems to be a fairly average length of time before diagnosis according to Coeliac UK.

  • Wow--- that is horrible how that happened to you! it's awesome that you are sharing your story.

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