To ask the GP about coeliac disease?

[hht]

I had always got an upset stomach around once a month but over the last year it started happening once a week. I did a food diary and there was a link between when I would eat gluten so I decided to trial going gluten free for a few days. That was 2 months ago and I couldn't bring myself to start eating gluten again as the difference it made was honestly life-changing. I accidentally ate gluten without realising for the first time in 2 months this weekend and immediately had an upset stomach and the severe stomach cramps and dizziness again, my stomach still feels a bit upset/sensitive even a few days later.

I had a coeliac blood test last year when I was eating gluten as I was referred for suspected IBD due to blood in my stool, but the blood test was negative and all my colonoscopy biopsies were normal. Because of this, I'm having a really hard time believing that I may have coeliac disease, or gluten intolerance, and I feel like I'm somehow making it up or the effect of gluten is a placebo. I feel embarrassed mentioning it to friends when going out for food or visiting someone's house for a meal, like I've just jumped on some kind of fad bandwagon (I'm also a vegetarian so already a bit of a pain for people to cook for).

WIBU to go to the GP despite having previously had a negative blood test?

It sounds like it's worth you going back.

Same here. Mine was late onset, my hair started falling out, I was constantly anaemic, I was either constipated or had diarrhoea.
I stopped eating gluten and suddenly got better and my hair grew back.
I won't have the test because it means eating gluten for 6 weeks according to my GP and I'm not prepared to start feeling ill again when I feel great now.
I just stick to my coeliac diet.

I can't see how the test will change my life in any way.

If you're having problems always worth going to gp to rule out any other potential problems. In terms of gluten, a diagnosis isn't going to make a massive difference. If you identify that eating gf reduces symptoms then go gf as that's the 'treatment' for coeliac anyway. A label won't change that. Lots of people can be gluten sensitive without having coeliac. If they are running the blood test again though make sure you eat gluten in the run up or you may get a false negative

I would just cut out gluten.

I was diagnosed by a doctor in 2020 while in hospital. I flagged up issues and asked to be on a gluten free diet. I did so much better they told me to stick with it. No point in testing as you can have a false negative.

I'd say you probably have a wheat allergy/ intolerance rather than coeliac - the way coeliac disease works means it takes a few hours to react - and if you've been eating gluten consistently it takes weeks to feel better.
It doesn't make it any less, and if you feel better gluten free then do so - but you might be able to tolerate barley or spelt wheras someone with CD can't

IMO, if you feel you are coeliac then you need to have it confirmed via blood test. I say this as a mother of 2 DC with coeliac; it's all well and good going gluten free BUT you need to be especially mindful of cross-contamination (i.e. coming into contact with even the smallest crumb of gluten). One crumb can cause massive issues and re-set your stomach's healing back by 6 months. I would want it confirmed / refuted that you are 100% coeliac; if you are a confirmed coeliac, then you need to ensure all your food (such as when you go to restaurants and even at home) is made well clear of gluten foodstuffs, and you use separate butter / jams / toasters / chopping boards etc.

You have your negative blood test and the only way to re-test now would be for you to go back to eating gluten again daily. It's your call but personally I would not do that having already got your negative blood test.

I would call it non-coeliac gluten sensitivity and just wear the awkwardness. You don't need a coeliac diagnosis to justify your food choices and it's perfectly possible to have quite a strong reaction to gluten/wheat without being coeliac. And importantly ignore all MN posts where people refuse to cater for special diets if it's "only" an intolerance. I like to think that IRL most hosts wouldn't actually want to feed their guests foods that will give them hours of stomach pain and diarrhoea. Take your own food, don't expect them to jump through hoops for you, but also don't eat food that will actually make you ill out of "politeness".

It's worth going back, but you will have to be consuming gluten for 6+ weeks for the test to be meaningful. If you're not reacting to gluten the test can't measure your reaction.

I'm coeliac, and a close family friend has a non-coeliac intolerance. If it's not coeliac disease you may be able to tolerate some gluten grains, so your diet may not have to be quite as restrictive as being completely gluten-free. It's easy to underestimate just how big a diet change going gluten-free is to do it right.

If you have coeliac disease a diagnosis is worth it. There are potential complications that you can then be checked for, and there's the occasional benefit (free covid and flu jabs even if you're below the usual age threshold).

Do you have any other symptoms? For at least the past 2 years my partner has been going for various tests but they couldn't find anything. Just said it was colitis. Turns out it might just be his thyroid and they never thought to test until he mentioned it. This started with stomach issues and gradually went to weight loss, shaking hands, fast heart beat. His mum is celiac so first thing they did was try to eat same and it did help a little

@hht I had loads of issues post covid but all neurological. GP told me to try gF and lactose free to see if it made a difference and it definitely does. Apparently according to GP Wheat intolerance rockets in over 60's and yet you see a lot of more mature people cramming down cakes and biscuits- but then say they have stomache issues or IBS etc. I reckon some have a wheat intolerance. Apparently the same is true of lactose in many older people.

I have no issues with oats or spelt etc

I don't think I am coeliac as I can have the odd Yorkshire pudding or even the odd crumpet without much issue- but I remain much more stable overall if I aim to stick to GF

Autoimmune thyroid conditions and coeliac disease often occur together.

it would be worth asking for another coeliac blood test as coeliac can show up at any time, a previous negative result doesn't rule it out, it just means you didn't have it when you were tested last time.
It's worth ruling the diagnosis out if nothing else, as there are comorbidities that can affect those with coeliac disease further down the line, including other auto immune conditions, and if you do get the diagnosis you'll be offered a dexascan to check your bone density etc
as pp said, you'll need to be consuming gluten when you have another blood test, so bear that in mind

If you haven't been diagnosed please don't tell people you have coeliac disease. Stick with non-coeliac gluten sensitivity.

I am diagnosed with coeliac disease and the amount of people that tell me they feel better when they don't eat gluten so must be coeliac is infuriating. If I get glutened it's not just bloating or feeling uncomfortable it's agonising pain, hoping I can move enough to get the toilet, brain fog, nausea and a load of other symptoms. The disease also resulted in a bowl resection because of masses growing that my Dr attributed to coeliac disease and the damage caused by eating gluten.

On another note the eating GF fad is driving me crazy too. Its resulting in restaurants being less understanding of Coeliac disease and assuming being GF is a lifestyle choice, the then means they put less effort in reducing cross contamination and I end up sick even if though I ordered gf food.

Coeliac UK is a good place to start though if you don't think you are getting support from a GP. They can give you all sorts of advice to get re-tested. The other thing is that it could be something completely different going on so your discomfort does need to be thoroughly investigated.

What does bone density have to do with gluten?

Damage to your small intestine can impair mineral absorption, particular calcium. It's not the gluten, it's the damage caused to your body and the secondary effects resulting from that.

@Spencer0220 it's not the gluten per se - Coeliac disease is an autoimmune disease and as with other autoimmune diseases there are other issues that come with that such as inflammation and poor absorbtion of nutrients including calcium.

@HIC2020 I totally get what you mean- I'm sensitive to gluten in large amounts on a regular basis , mainly wheat, but I know I'm not coeliac as I can eat odd things now and then that have gluten with no ill effects. I checked this out several times and so didn't test- I undoubtedly though feel better on a mainly GF diet.

It must be annoying as hell though if you actually are a diagnosed coeliac and people presume you are being faddy or don't bother as thoroughly as they should about cross contamination etc

@HIC2020 In the kindest way possible your post is kind of why I want to go to the GP and pursue further investigation, as you seem to suggestion that an intolerance is 'just bloating and feeling uncomfortable'. I don't have that; that's a complete minimisation of my symptoms and I worry that's what friends and family will think when I say I'm gluten intolerant.

If I eat gluten I come over in a cold sweat, stomach cramps, diarrhoea, ears ringing and almost passing out. I'm terrified it will happen when I'm out in public as I often have to lie on the floor to stop myself fainting. It's honestly the worst feeling I've ever felt, I feel like I'm dying

Gluten sensitivity often leads to nutrient malabsorption. Osteopaenia is common in relatively young people with coeliac

You’ve had the test, it was negative. You’d have to eat gluten again for 6 weeks before re testing.

assume you have NCGS and maintain your diet.

@hht you do need to go back if those are your symptoms. I don't get any of those, if I eat lots I get back of head headaches, mild stomache cramps for a few hours, and wobbly legs- yours sounds much more than an intolerance.

Actually I have changed my mind- assume you just have a big intolerance and follow the GF diet and make sure you take good B vit supplements- I developed folic acid deficiency whilst eating GF and GP says many do due to the fact many GF products aren't fortified- other than that eat a lot of green veg most days!!

A positive diagnosis would mean you are eligible for free flu and covid jabs, and in theory annual bone density checks/blood tests/ screenings for bowel issues.

A high proportion of people with coeliac disease also have issues with their spleen which can seriously compromise their immunity. During the pandemic people with coeliac were eligible for the covid jabs around the same time as health professionals due to their increased vulnerability.

I would go back if I were you… I'm coeliac and those are the symptoms that I get (as well, as throwing up for five or six hours) if I happen to eat gluten accidentally.