Sally

I was suffering from fatigue and anemia for 6 months. I was prescribed a course of iron tablets, but it was still anemic, so the doctor did further blood tests, and it came back that the TTG levels were over 250. I was told to stop eating gluten products and things containing wheat, barley, oats, malt, and rye. This was at 6 pm, so I dashed out to the shops to buy some GF food and was shocked at how much more it costs and how much you had to take out your diet. I had to learn repeatedly what I could and couldn’t eat. Where I could eat out and how limited certain restaurants were. I’m still shocked to this day how many catering premises don’t understand what celiac is. How many times I was told they could cook things at a higher temperature to kill off the wheat, and how many people said what is it you can’t have. I was reluctant to eat out at the start as I had been cross-contaminated so many times due to my lack of understanding.

When I’m cross-contaminated, I suffer from sickness and diarrhea, stomach cramps, and very sore, red, dry, patching skin, especially on my face. I only had stomach issues after stopping eating gluten, and when I was cc, I never had the typical symptoms and stomach issues before I was diagnosed, so it came as a complete shock that it came back that I had it. I liked the pasta and pizzas beforehand with no issues. Since 2021, we have found more places to eat out safely, take allergies seriously, and not look at you like you’re awkward.

I have learned how to cook more from scratch so I can still eat the meals I used to love without the fear of getting ill. I have seen our shopping bill triple because GF products cost much more.

Since being diagnosed, I have now had my appendix out and suffer from endometriosis and a thyroid condition. My consultant said it’s common that if you have one autoimmune condition, you’re likely to have others, and here I am.

Learning to cook differently has taken 3 years and trial and error, but my TTG levels are now within normal range.

Things are getting better. We have found local takeaways that make coeliac-safe dishes and have traveled with translation cards to different countries that have catered very well for GF meals. Be bold and ask people to wash things again or wash their hands/change their gloves when dealing with your food/drinks. They must keep you safe and free from contamination. I am much more confident in asking people to take more precautions.

A top tip is to double-check labels when shopping as some products can change without warning and now either contain wheat or may contain, which you must also stay clear of.