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Gluten Free Guerrillas

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Chasbury profile image

Just realized I might have Coeliac disease. I had radio therapy for prostate cancer a couple of years ago, which blasts the surrounding organs including the bowel. So I thought my symptoms were due to that. But reading all the coeliac symptoms I wondered if that's what it is.

So I'm trying a gluten free diet which seems to be improving my symptoms. So work in progress.

Any tips and advice gratefully received.

6 Replies

Hi Chasbury,

I’m sorry to hear that you’ve been having problems tolerating gluten.

Please DO NOT make the mistake of going fully gluten-free until you have been to the doctors and had a blood test for Coeliac Disease.

In my experience, too many people experiment with doing a gluten free ‘trial’. It often works well initially, but they then go on to regret their decision - because they missed out this really important step. It can subsequently be a lot more difficult to access the appropriate medical support they may need, due to this lack of any formal diagnosis.

It’s so much easier to rule out Coeliac Disease whilst there may still be gluten antibodies still in your system (which is what the blood test looks for); than to try to subsequently re-introduce gluten at a later date. The side effects of eating gluten will be so much worse on your body and so much harder to tolerate.

For the blood test to be affective you have to have been eating gluten for at least 6 weeks prior!

I strongly recommend that you consider seeking medical advice asap.

I hope this helps.

Chasbury profile image
Chasbury in reply to Regalbirdy

Many thanks for the advice, much appreciated. If I do have Coeliac Disease is there a cure or is the treatment to go Gluten free?

Cooper27 profile image
Cooper27 in reply to Chasbury

As regalbirdy says above, always get tested before going gluten free. If you've only recently stopped eating gluten, then reintroduce it until you can be tested. It will make your life easier if you have a confirmed diagnosis.

There is no cure for CD, the treatment is to follow a strictly gluten free diet. This will include replacing a lot of your kitchenware.

Hi,I agree with above comments. Definitely get tested and even if result comes back negative but you feel better on a gluten free diet then it makes sense to avoid it. I was diagnosed a few years ago and changing my diet has changed my life.

When I’m at home there’s no bother because I cook everything from scratch. Eating out can be a bit of a minefield.

I haven’t changed much in the way of utensils in my kitchen. My husband isn’t coeliac. He uses the toaster and if I want toast I use the grill. I bake with gluten free flour so any baked goods in our house are gluten free. He eats shop bought bread in his sandwiches so there’s no fear of him.

You will need to read the labels on everything before you eat it. The main allergens are in bold. Anything with wheat, barley, oats or rye are the main ones. Look out for things like barley malt as well. In fact anything that says malt, like malt vinegar. I use the clear distilled vinegar.

You could join the coeliac society. They give great advice and in some organisations they send you out a book on gluten free foods in the main shops. At least they used to do that in Ireland. Not sure if they do anymore as I’ve let my subscription go.

It’s also a good idea to have your own butter, stick a label on it. Jams and things that other people in the house may be using too.

Good luck with finding your way. Anything that makes you feel better will be worth doing.

I hope that you are on the road to recovery from your cancer. Going gluten free will be a walk in the park after that. Best of luck to you.

Hi Chasbury,Welcome here. Sorry to hear about you having prostate cancer and really hope you are in remission. I’m not going to add to the great advice given by regalbirdy, Cooper27 and Kidr regarding keeping gluten in your diet until diagnosis.

For me, gluten free is easy as I am a protein (meat, fish) veg and fruit kinda gal.

Best wishes 🐳

1st tip - as other will have mentioned - don't go gluten free. Once you do, gut starts to heal, antibodies drop, and the blood test for coeliac and biopsy will show you're negative. Get gluten back in your diet, go to your GP, and take it from there.

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