Angela
In 1991 I started feeling exhausted, I had headaches and had brain fog. I went back and forth to my GP who told me: ‘I should rest if I feel tired’. My GP eventually sent me to hospital to see a specialist. After going to hospital regularly for 2 years I was given a diagnosis of ‘Chronic Fatigue Syndrome’ and was offered Prozac! I refused to take Prozac and had to keep this diagnosis quiet as I knew that I would render myself unemployable if I spoke of it. I suffered in silence and discovered that I felt marginally better when I took a variety of vitamins and minerals even though my GP would tell me that; ‘All I was doing with these supplements was producing very expensive pee’! I found that I felt great when all I ate was boiled vegetables or salads, but I couldn’t keep this up for long as I would feel hungry. As the years went on, I developed a variety of other symptoms. I would break out with mouth ulcers. I would go to various dentists with my mouth ulcers and was told to change my toothbrush or toothpaste and gargle with a mouth wash! I became iron and vitamin D deficient and developed a serious case of osteoporosis and tingling in my legs. Yes, I had a lot of Coeliac symptoms, but the microbiome wasn’t clearly understood in the 1990 and early 2000.
In December 2022 I went to my current GP complaining of diarrhea, fatigue, headaches, brain fog, tingling in my legs, mouth ulcers and itchy skin. This GP could also see that I had a history of vitamin deficiencies and allergies. Finally, someone had added up all the dots and gave me a Coeliac Disease test and of course I tested positive to all 4 markers! After undergoing a gastroscopy and colonoscopy I was told that I was also Lactose Intolerant and that I had obviously been Coeliac for a very long time!
My message to others is that you may not present with all the obvious side effects of Coeliac Disease at the same time. It may start with just a few symptoms which are not obviously linked to Coeliac. Also, don’t accept the first diagnosis that you receive for your symptoms. Do not suffer in silence. Doing so might mean that you end up with a host of long-term damages that could have been avoided if you had dealt with the underlying issue earlier.