Jackie has had coeliac symptoms since birth but was only diagnosed as an adult. Here’s her story …
“I was incredibly sick from birth with doctors taking me off different foods to try and find out what was wrong. My mother used to boil bones twice and sieve them for me to drink, or find goats milk (which was hard to come by 60 years ago). I remember being at kindergarten and having to go into the office to eat because I couldn’t be around the other children or because I had to eat different food. They never found what was wrong. They did try me off wheat for three weeks which obviously wasn’t enough. That was hard for Mum. I was eating a rye bread in cracker form at one stage.”
The health issues continued into adult for Jackie: “My symptoms were aching joints, tiredness, loose bowel motions, bloating etc. I was getting so tired I couldn’t stand at the door to say goodbye to people (when I was about 35 to 40) and was having acupuncture for a five year chronic sinus infection when the acupuncturist suggested I go to a doctor/alternate in Ham East. Anyway he said that’s [coeliac disease] what it was and to go off all gluten.”
“I only had a blood test and wasn’t told about the biopsy until I saw a regular doctor a year after I’d been on a gluten-free diet. When I had the biopsy I’d only been back on gluten for about three weeks and I told the specialist I wasn’t sick enough yet (the nurses agreed with me) but he went ahead with it anyway and it came back negative. I was crying when I left him, stopped at the door and said “What do I do now?”, he answered, “go off all gluten”.
No one seemed to know much about coeliac disease when Jackie was diagnosed “I was only told to google it – not helpful for a person who wasn’t that good with computers. I didn’t really know what to eat and kept losing weight getting down to 7 stone and dropping still, so I ate more of everything that I knew was alright until I went up to 9 stone (which the doctor said was my right weight) then leveled out at 8 1/2 stone after a year or two and stayed there ever since.”
“Initially there was some bread available but it was pretty awful, there were g/f flours but they didn’t work well either. A friend started playing around with recipes and used me for her guinea pig with biscuits, bread, pikelets, pastry and cakes. She started up The Gluten Free Goodies Company and then sold it years later.
“I ate lots of rice, fruit, vegetables and plain meat and took my own food everywhere I went until products were labelled better. Then I got into eating too much in the way of biscuits, cake, processed food – I have tried to wean myself off those now (partly because my sister and father have diabetes) but I’m not always successful. I feel ripped off sometimes with not being able to eat what other people are eating and would love to tuck into some fresh normal bread. [However], I think there is too much choice now and so much of it not good for us.”
Jackie’s advice for the newly diagnosed:
Don’t let yourself lose all that weight, still eat sensibly with not too much processed food because it doesn’t make you feel better. I found g/f breads bloat me and give me diarrhea, I think because of the guar gum or something similar, so don’t have very much of that.
Thanks for sharing your story Jackie!