Any Coeliacs here, I have a few questions if anyone is able to answer?

[JustJane73]

I have been struggling with my gut health since I was 25. I am now 52.

During the last 6 years things have been pretty awful and I just can not catch a break from my daily symptoms no matter what I try. I struggle with upper gut issues as well as lower so no part of my digestive system is free from issues.

Over these last 6 years I have been under my local gastroenterologist. In 2019 I had a gastroscope and colonoscopy. During the gastroscope biopsies were taken for various issues including coeliac disease. These all returned as normal.
I had a repeat colonoscopy in 2023 as they didn't check for microscopic colitis in 2019, this returned as normal also. A pill camera endoscopy during that year and a Bile Acid scan also came back as normal.

However, my gut issues continue and if anything they are getting worse.

I also have other physical issues going on including absolute exhaustion. This had been going on for decades and as I was very iron deficient (I had ferritin levels at 3 for 10 years), I always put that down to this issue but an infusion in 2022 and a uterine ablation now sees my ferritin levels at 60 but I am still so so tired all the time.

I went to my (new) GP last month. She arranged for a full panel of bloods to be taken. These all came back as normal and no action. However, this week I have been looking at my results and note that the IgA levels were flagged up by the lab as being abnormal. I contacted the GP and she has just got back to me to say that the reason she marked it as normal no action is because my Anti-tissue Transglutnas (sp?) level is normal and she didn't realise until she googled that a low IgA can produce false negatives with this test. So she has now ordered some more blood tests to be taken.

Anti-tissure transglutnas is 0.2 U/ml range is 0.0-0.69

IgA is 0,72 g/l range is 0.8-4.0

My folate levels are also consistently low but all the GPs I have seen have stamped this as normal as no ranges given (google tells me it's low at 3?!)

My question is - has anyone been through anything like this?

Is it possible I have coeliac disease even after all of these tests? Has anyone been diagnosed at a late stage in your life and what were your symptoms? Has anyone eventually tested positive for coeliac disease even though previous results were negative?

Btw, even though I have experimented with going gluten free many times in the past I am sure I had been consuming gluten during the times I was tested as I know going gf can skew results.

hi, I’m sorry you’re going through this. I was diagnosed 3 years ago, all of my tests were negative but my gastroenterologist carried out a genetic test for coeliac that was positive - you don’t need to consume gluten for it.
I had gut issues, rashes on my face and exhaustion.
When you’ve went gluten free in the past, how long did you do it for? Did you check absolutely everything for gluten and cut out may contains?
I also have ibs and suffer both upper and lower gut issues which continued after going gluten free so I followed fodmap under a dietician, I now know all of my triggers which can be restrictive at times but my gut issues are fully under control for the first time in my life - I’m 42.

Thank you for that, I've never really looked into coeliac disease thoroughly tbh due to the previous negative tests. I was unaware there is genetic testing for it.

I am low fodmap and have done this with the help if a fodmap trained dietitian (I am under the UCLH's dietetics and neuro-gastroenterology department) but I'm still experiencing all of these issues.

The longest I went gluten free was for around 8 months. I was fairly strict but in all honesty probably not as strict as I would have been if I thought/knew for sure I had coeliac disease. I was thinking more on the lines that it could be a gluten sensitivity so was probably less vigilant.

I've had a further blood test today and will be interested to see what the results come back with.

Genetic testing for coeliac isn't diagnostic. If you don't have the genes it's almost impossible that you would have coeliac disease. But carrying the genes doesn't mean you have coeliac disease, just that your risk of developing it is higher.