To ask the GP about coeliac disease?

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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?

The trouble is, as you know, the having to eat gluten every day for weeks before a blood retest.

I do think you should go back to your GP. They may be able to send you for endoscopy without a positive blood test based on symptom history. But then, same problem, you'd have to eat a good dose of gluten daily for weeks in the run up to the gastroscopy. I think I waited 8 months for my first and then another 4 months for my second, so it could be a long time of making yourself ill every day. And that can be unbearable for a lot of people, especially those who've already given up gluten.

Have the conversation with your GP and go on from there. There may be other things they can test for, other avenues to explore. You can discuss whether the cost/benefit of going back to eating gluten for the sake of a positive diagnosis, and being less judged by judgy people, adds up for you personally.

You talk about colonoscopy biopsies but did you ever have endoscopy biopsies? My blood test was negative and my large intestine (colon) was fine but my small intestine showed extensive signs of damage (ulcers and villus erosion) which were used to diagnose me.

No I only had a colonoscopy as I had a few episodes of bleeding and they wanted to rule out Crohn's and ulcerative colitis.

You will need to eat gluten for six weeks in order to get a result on the coeliac test. It’s worth the hassle. If you’re diagnosed with coeliac you will get regular blood tests to check your vitamin levels and antibodies. You will also get regular bone scans to check if the coeliac is affecting your bones, and get treatment if it is. And if you develop any tummy problems you’ll be fast tracked for diagnosis and treatment, which otherwise wouldn’t be prioritised. Someone with “non coeliac gluten sensitivity” isn’t eligible for any of this monitoring or treatment.

It does sound like coeliac disease. This is how Dd reacts, she pretty much passes out. I’ve had to carry her out of restaurants, she’s unable to walk, talk. Slurring her words and seeming drunk. Then the d&v starts.

problem is you need to be eating gluten twice daily for six weeks for a blood test to show it up. I agree, maybe just decide yourself you are. 🤷‍♀️

I believe this was one of the first things they tested for. But ruled it out.

I got diagnosed around age 4 or 5. No blood tests for it then as it was over 20 years ago. My grandma thought it could be coeliac disease so my mum took me off it and I was much better. At the hospital they thought I had leukaemia as I was ad white as a ghost and had a pot belly due to malnutrition. They put a camera down my throat eventually to confirm.

For anyone saying they thought they may have coeliac disease but don't have many symptoms, please be aware the symptoms aren't always vomiting or diarrhoea. We have little things in our intestines called villi which stick up and absorb nutrients. If you eat gluten with coeliac disease the villi lay flat and you don't absorb nutrients which leads to malnourishment. So always best to check.

Thank you all, I've asked for a doctor's appointment and will see what they say.

I know my blood test last year was negative but that was when my symptoms first started, they have escalated a lot this year so maybe it would be picked up now? I've also heard the blood test can give a lot of false negatives, and that endoscopy biopsy is the gold standard for diagnosis

Colonoscopy won't diagnose Coeliac disease, you need an OGD and biopsy of the duodenum

Being able to tolerate some gluten doesn't mean you're not coeliac! I have a coeliac diagnosis, and thyroid issues and anemia are my main symptoms. I don't actually seem to react to eating gluten like many people say they do. So you never know. :-)

Think it is less likely if you've had a negative but it's easily done so best to check / anti TTG is the blood test