Coeliac? Why should I get tests when may make me ill?

[wwyd2021medicine]

In short:
In normal life I eat virtually no gluten
First 6 months at f this year I had bread about 4 times and I don't eat upfs
August I got covid - ate a load of toast as felt too ill to prepare anything else.
Post covid, I got awful ibs symptoms- bad enough to keep me in bed, not go to events. Bloating l have never had before - literally looked 5m pregnant, nausea some days, heartburn etc etc

I could have coeliac which had just shown itself because of gluten consumption

Could I just go GF and not bother with test? If for the test I've got to do 6 weeks of twice daily gluten then I'm worried I'll just get terrible symptoms so should I put myself through this?

I'd be grateful for any thoughts

If you generally eat no gluten anyway (do you not even use regular flour in your own cooking/baking?), I'd just go back to your regular diet which wasn't causing you any issues.

But I think it's not hugely unusual to have gastric symptoms after covid anyway.

You can do what you like. You can’t get a coeliac diagnosis without eating gluten though. But if this doesn’t bother you then just carry on with your gf diet if you find it helps you

Do the test. Coeliac disease is very different from intolerances - it's an autoimmune disease, with a whole range of other conditions that it can render you more vulnerable to. It also attacks the tissues of your system, meaning you don't take in nutrients properly.

If you're coeliac, it's also essential that you know about gluten in hidden ways such as soy sauce, marmite etc and the seriousness of cross-contamination. You'll need to tell every restaurant so you aren't glutened.

A friend of mine was glutened when we ate out once - they insisted they knew how to clean down and cater for her, but she still ended up off sick from work for a fortnight and was in incredible pain. The dish was baked fish with rice - no need for gluten to be anywhere near it.

So yes, do whatever you need to do to get a diagnosis - it's a necessary evil for the long term but discuss it with your GP or see a specialist dietician for advice (not a nutritionist!).

You could go back to your own gf diet if that worked for you and resolves your symptoms.

I just want to point out though that a gluten free diet and the diet coeliacs follow have a few differences that you might want to consider (if you don't already) - coeliacs can't eat anything that contains wheat, barley or rye, even if it has nothing in the ingredients it could have a 'may contain' so that's a no-go. Also, contamination is the big thing for a coeliac - gf food cooked alongside wheat or using the same oil, same toaster, same butter tub etc is at risk of contamination so a coeliac cant eat it. This is a massive thing when eating out as many places may offer gf dishes but they arnt coeliac safe.

I came to the same conclusion on first lockdown- awful IBS symptoms, chronic diarrhea, lethargy, bloating etc. I had been following a low carb diet prior but had started comfort eating I guess. My sister is a coeliac she suggested I go GF, and my symptoms resolved almost immediately. I felt way better, good energy, my stomach deflated etc. I asked my GP whether I should get an endoscopy and she referred me.

I was called pretty quickly (private) and had to do a 6 week gluten trial, as in go back to eating'normal' diet. All symptoms came back, I felt awful! When I went on holidays I even reverted to GF cos I didn't want to feel so ill for my holiday.

Newest thinking is to do both endoscopy and colonoscopy for coeliac investigation. I did the horrific colonoscopy prep (so revolting) had the tests and got results- all normal. Biopsy showed no signs of coeliac. TBH I felt robbed! I'd gone through the whole summer feeling awful, done that revoting colonoscopy prep & the outcome didn't help me at all. I still can't eat gluten, and now I feel bad telling waiters in restaurants that I'm coeliac!

So my long winded answer is no. If you're certain it's gluten that triggers your symptoms, then that's your answer. HTH

Thank you all
DD has commented in the past that it's odd how I get wind when I have a cold - burp, flatulence - and again, I eat toast with a bad cold

I think I'll just have to go for it. There's no getting around the fact that even if I don't get symptoms, my gut could still be being damaged with small amounts.

I do use flours in sauces and soy sauce so if I do or don't get a diagnosis it would make a big difference to my cooking/ eating out. It may simply be an intolerance.

@N0tfinished
Were you positive on the blood test?

I didn't do the blood test. I've heard of many false negatives on the blood test. I also have osteopenia which is linked to coeliac disease at my age (due to poor absorption of minerals). GP said that & prolonged diarrhea warranted full investigation. Endoscopy is still gold standard for diagnosis here. I'm in Ireland btw, coeliac disease is more common here.

If you have coeliac disease you need checking for thyroid disease, vitamin levels and bone density on a regular basis. It would be hard to justify without a diagnosis so ideally , yes, you should be tested and work from there.

My GP actually said that as I had given up gluten and was much better without it there was no merit in eating it again just to do the test. I do avoid things like soy sauce, but (so far) have been OK at restaurants with dishes that say no gluten containing ingredients. We all eat gluten free pasta at home and most of what I cook is naturally gluten free.

I gave up gluten in 2013 and I would be worried that eating it again now would make matters worse so I would have to be even stricter. A friend made me flapjacks with non gluten free oats a couple of years ago and I was almost immobilised with joint pain for a fortnight.

@yikesanotherbooboo that’s interesting as I was already diagnosed with underactive thyroid after my second pregnancy in 1992

This - you do need regular monitoring if you are coeliac and you will not get that if not officially diagnosed.

Also what if it is not coeliac? It could be something else that requires treatment.

Coeliacs got early covid vaccines due to spleen issues so I would want coeliac on my notes. Some medication contains gluten so again it is worth having the correct diagnosis on your records.

I have coeliacs and do understand how rough it can make your feel but maybe short term pain for long term gain is the way to go if you can bear it.

I had an extremely high reading on my blood test so the medics got me in really quickly for endoscopy and said be gluten free from that stage do not wait for results.

Gluten is in everything so you do need to be extremely careful of all foods. Even cross contamination eg putting a spoon that has been in flour into the sugar will containinate the sugar. It really is worth getting the correct diagnosis.

Bone scans as a women are so important. You also need your iron Vit d and zinc checked

This is ridiculous
I'm going to get the bloody test
Completely GF last week on holiday- not hard at AI in heat as all I ate was meat fish eggs veg and fruit - I was fine
At weekend I had a oizza, a piece of bread and a slice of HM cake. I could barely stand this morning. I feel so sick and heartburny and I'm bloated like a goat (look 5m pregnant literally) I can't even tell if I'm hungry or not

Yes the pm bone loss plus coeliac does worry me too. I feel so ill

You need to get tested because, as others have said, it has implications for your long term health. It increases your risk of other auto immune diseases and isn’t just about avoiding bread - you have to check everything and inform restaurants etc. Even if you don’t get outward symptoms, a tiny amount of gluten will damage your gut.

I have to have yearly monitoring and vaccinations because I’m considered immune compromised due to my coeliac disease. It’s annoying - I completed my NQT year as a teacher very ill every day while waiting for my diagnosis - but it has to happen.

I agree you should be tested, Coeliacs are higher risk for other things. Hope it isn't too grim.

The risk of other conditions and requirement to go completely gluten free mean that it is important to get a diagnosis. If you do have coeliac, you (and doctors) can be aware of the symptoms of the other conditions, so get diagnosis and treatment for them more quickly. Also, as you say, you’d have to completely eliminate gluten - which would impact cooking, eating out etc.

Just jumping on for advice. I have had an under active thyroid for many years and have been anaemic for a couple of years (I am mid/late fifties and menopausal) and I had severe stomach pains earlier on this year so was referred to gastroenterology and they recommended a colonoscopy and endoscopy. My results have finally come back asking me to be retested for Coeliac (due to these results). I have asked previously to be tested for coeliac a few years ago but I was as eating a very low carb diet and no bread etc (no one explained I would need to eat carbs for the test. I thought I might have a problem with gluten and lactose as I saw a naturopath about 20 years ago. I do feel much less bloated and gassy when avoiding bread and being low carb . Anyway, recently my stress levels have gone through the roof due to ill health of a close family member and I am back on the carbs and I have had bouts of severe stomach pains is it likely that I could be coeliac at my age as sometimes I eat something like a pizza or a scone and I am absolutely fine. Is coeliac something that can worsen or come on over time.

Is coeliac something that can worsen or come on over time.

absolutely yes. I think it's pretty common for people to be diagnosed with it in their 50s

I was diagnosed age 27, and only had symptoms for 18 months. It's one of those things that you're pre-disposed to and then can get triggered into full-on autoimmune disease. In my case it was the stress of an abusive relationship that caused it to start / get worse (hard to say which).

In terms of getting a diagnosis - definitely do, even though having to eat gluten while you wait is shit. I'm now entitled to annual blood tests to check my inflammation levels, annual flu jabs, and get called early for Covid jabs / boosters as some coeliacs have spleen problems. I also have osteopenia in my spine which was found by a DEXA scan after diagnosis, so it really is about more than just cutting out gluten.

Just to update - I didn't have coeliac. I had post covid IBD which has thankfully settled. It happens quite frequently apparently

There is gluten in so many things that it's v hard to avoid it if you are simply on a low carb diet. And then there's gluten intolerance which won't show up on the blood test and some people have similar symptoms from yeast containing products. There's also a lot of debate over how much/how long you need to eat gluten for before the test.

I think the consensus on here is that you should just bite the bullet, eat gluten and get tested which I would do if I were you after endoscopy as you were advised

Glad you don’t have it @wwyd2021medicine.

After yesterdays chronic stomach pains I am frightened to eat anything gluten or anything else.

I have received no medical guidance whatsoever regarding my diet before the test. I have only been asked to contact my GP to book a Coeliac test other information I googled which is pretty bad.

It is frightening to see the damage that you could be doing to your gut in coeliac even if you are not getting symptoms. Now that you are aware of the need to eat gluten before the blood test I would encourage you to do so as said by pp's to get a definitive diagnosis which will lead to proper management long term

DD is under the care of a doctor. She is now GF and her symptoms are under control. They reappear any time she eats gluten. We have taken the decision not to test her at this point, but to focus on keeping her well.

DH has the same symptoms so he has (for the good of both of them) carried on eating gluten and feeling awful so that he can have the tests.

Yes, I am eating some gluten but a bit of medical guidance about how much to eat before the test would really help. I only got the letter asking me to book a test at the weekend with no guidance whatsoever which is booked for next week.

I had some pizza on Sunday and felt fine.
Yesterday on my day off I was in absolute agony most of the afternoon and evening after having two slices of wholemeal toast at lunch time. Googling suggests eating gluten for 6-8 weeks (some days I have and have been ok and some days I haven’t had any).

It is difficult as I also work part time, have a home to run, have my husband to take to Radiotherapy appointments starting tomorrow (my priority) so stress levels are through the roof. No other family support and a teenage daughter at home and have to clean the house thoroughly as DH’s elderly mother (mid 80’s) and his sister and partner are coming up for a visit this weekend.