Coeliac Disease- 4 years on

Hello everyone 🙂

Today 4 years ago I was diagnosed with coeliac disease and so thought I would make an awareness post in light of it.

I remember going to the doctor as I felt extremely tired most days and lots of yummy trouble – something just felt off and felt like a zombie so had bloods taken for it to show positive levels for coeliac. I was then sent to have an endoscope to confirm it.

The endoscope was an awful experience as I got so worked up beforehand but to anyone going to go through it have a double throat spray and take deep breaths as once it’s passed the gagging point it’s not pleasant but it’s over quick- I remember watching it on screen and felt them take the biopsy.

Few weeks later I had an appointment at the outpatients for the results and was shocked at the image he showed me – he showed me a normal villi what it looked like and then mine- completely flat- no wonder why felt awful as nothing was really being absorbed 😦 he gave me a few websites and back then you could get prescription for gluten free food so told me how to do this but it was all overwhelming.

So my gluten free diet started and it was a minefield figuring out what can and can’t have and checking ingredients- cakes are so expensive so I now bake my own but the thing I miss is bread- gluten free bread is crap it’s small and most brands fall apart once you touch it!

So many foods have wheat flour in its silly- sausages and chips included! Why wheat flour on chips chips are just potato and oil!!!! The most sneaky is barley malt extract- some can tolerate others cannot and so far depending on what it is I can have some but rather avoid all together.

Gluten is found in wheat, barley rye to name a few.

All my baking recipes are gluten free and you can see baking cakes is cheaper and come up much bigger then flat small store ones

Companies do sent out free starter packs and this is good to try and see what you like and find out some brands are better than others.

I did have membership to coeliac uk and they send out s directory of all foods that are safe and was great for a newly diagnosed but as the years go by you know what to look for so I now don’t need one- would advise to get one when you first start out.

A side affect to coeliac is lactose intolerance- first three months I had this and now every now and then it flairs up 😦 and due to coeliac I had osteoporoia to now osteoporosis due to absorption problems

I have yearly checkups to see if my level are ok and this year it’s normal meaning the gluten free diet is working and my villi is healing 🙂 I also have 3 monthly infusions for my osteoporosis and hope to have another dexa scan soon to see if it has improved 🙂

Gluten intolerant is different to coeliac- being intolerant doesn’t damage your body and i know people that are and still every now and then eat normal food and deal with the ill symptom later whereas I can’t as my body will attack itself and all the hard work of repair goes.

Coeliac is an autoimmune disease not an allergy!!! My immune system will attack itself and damage lining. I hope I have now drummed that into people and can fill this page just saying it! I get that intolerance isn’t nice and an allergy is nothing to laugh at either but all three are different

It’s not a choice or a fashion thing – and no cross contamination is an issue as yes a crumb to some can be damaging! It’s like telling someone who cannot have peanuts only one won’t hurt!

When I accidentally gluten myself I suffer for nearly two weeks of headaches, stomach aches, tummy issues, tiredness and major brain fog – imagine having all that for ages just because of gluten

coeliac uk have a “is it coeliac” assessment on their website https://isitcoeliacdisease.org.uk/but of course go to the drs if want more advise and medically diagnose

1 in 100 people in the UK get diagnosed but some get missed and diagnosed with IBS as symptoms are similar- a simple blood test will confirm antibodies in the system and of course a gut biopsy

It is a life long condition and no cure so far apart from a gluten free diet.

So yes happy 4 year anniversary to my diagnosis and hope this has helped give out some awareness to this disease that isn’t rare but quite common

Coeliac awareness week starts 13-19th May so will add more info and more gluten free recipes around then

Any questions feel free to ask!

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