Coeliac - what are benefits of getting diagnosed?

[PeachP]

Hello - hoping to understand if anyone else is in a similar position and what you decided to do.

I'm on day 6 of the 6 week gluten loading before a coeliac blood test but I'm not sure I can carry on with the gluten consumption as it's making me so ill.

I've been eating GF for a few years since realising it was causing me problems and after my mum realised the same. She tested negative on the blood test but has strong side effects when she has gluten so is strictly gf. She wasn't offered a biopsy anyway and in her area there isn't much support anyway so she's ruled out getting a diagnosis as she doesn't think there's a benefit from it.

I've recently had a few episodes of worse symptoms after accidentally having gluten so decided to do the blood test before I start a new job in August. But it's really horrid, painful, depressive symptoms, brain fog impacting my work, bad bloating, nausea and diarrhoea - and to top it all off I'm getting bladder sensitivity (/initial UTI type symptoms) that I haven't had for years, and read last night that can be caused by it too. Especially because of that - I'm not sure I can go through it. (I also feel less balanced and have pain in my finger joints but unsure if that's connected)

Is there actually a benefit to getting diagnosed??! Or should I just stuff it and go back to my happy life without gluten.

Tia

The benefits of diagnosis is that you will be entitled to extra tests and support. Things like bone scans, regular blood tests etc to check for other damage from the coeliac disease that go beyond the gluten symptoms. Very tough eating it when you have such a bad reaction, I understand, but stick with it if you can. There are longer term health implications you could possibly miss.

My DD15 is coeliac.There is no way she could manage a day eating gluten op.I know 2 adults who haven't been tested but know they are coeliac for that reason.If you eliminate gluten you are 'cured' so don't need other tests.Just take vitamins, iron to make up for any deficiency the gluten has caused .My daughter hasn't had any extra support since diagnosis except a blood test a year after diagnosis which confirmed she had eliminated gluten.
She was then discharged from gastro.Oh and join coeliac.uk. for advice and their barcode scanner.

I would say in your position it is really tricky. I was diagnosed a year ago after having a blood test and had no idea what coeliac was. I debated on an endoscopy as thought not pleasant procedure. However for me I did not have a severe reaction to gluten and wanted the 100% certainty of a diagnosis that would mean I would have to change my life and would mean no chance of cheating. Also meant family and friends would take it seriously and not a ‘fad’. You sound well adjusted to your gluten free diet and lifestyle.
It has taken me a while to stop mourning the loss of bread, cake and pizza and loss of spontaneity. Not sure on the support as it has been pretty rubbish from my GP just a further blood test and no follow up. You sound well settled into gluten free so an official diagnosis may not bring benefits.

I've not yet been offered anything additional from being officially diagnosed as having coeliac disease. I had to ask for additional blood tests.

My DD was diagnosed first and she got a referral to a dietician.

I read an article recently with research which showed two weeks of eating gluten once a day was enough to give 80% of the study participants positive antibodies. However, even if you got a positive antibody test, you'd have to keep consuming gluten up to the biopsy.

In your case, it sounds like you should declare yourself gluten sensitive and keep doing what you've been doing. At some point the route for diagnosis might change and you could reassess at that point.

I'm going out of my way to look after my immune system as much as possible since diagnosis (and the start of losing my hair) supplements, eating well, exercise, destressing etc...

I haven’t been tested for the same reason.
DS1 is currently having to eat gluten and is really unwell.

Once diagnosed you should be offered yearly bloods/follow up with gastro, access to a dietitian and a bone density scan. It also makes you eligible for some vaccines/early vaccination like with covid. It can also mean you actually getting fed in hospital. Some areas are more forthcoming than others though.

Coeliacs are more likely to develop T1 diabetes. The kids gastro keeps an eye on their height and weight too. He also wrote to the school (before we took them out!) as school refused to make accommodations or cater for them without diagnosis.

Mine mostly checks various blood tests but since it's once a year it's no hassle and I figure better to keep an eye. Especially since people always seem to end up with more than one auto immune condition!

Oh gosh yes I forgot. Actually, being able to get an official diagnosis letter does help with things like being permitted to take an extra bag on a plane or permitted to take your own food into Wembley Stadium.