Coeliac

[DrCoconut]

I've had a blood test which came back suggesting I have coeliac disease. I have some other symptoms too - toilet issues, had low iron, tired. I'm now awaiting an appointment with gastroenterology to confirm the diagnosis. I've felt worse the last few days - run down, dizzy, poor appetite. Can it suddenly really start catching up with you? The first sign something was wrong was late last year when my hair started falling out and I was found to have low ferritin. My review was delayed due to COVID and although my ferritin is now ok (on tablets) my GP wanted to know if there was a reason it dropped so much, especially with me pooing so much (sorry if TMI). Is anyone else in diagnosis limbo and feeling a bit sorry for themself?

Just came across your thread.
Wondered how you have got on with your journey. Did they manage to get a diagnosis for you?
I have had toilet troubles for the last 6 months. Several trips to the toilet with loose BMs. I was told from blood test I could have coeliac but awaiting an appointment for a biopsy to confirm it. I recently start to feel really tired, fatigue, stomach cramps and lower back pain. Feel really fed up and sorry for my self also.
Hope you have managed to sort your issue

My understanding is that if the blood test comes back positive then the endoscopy is usually just an extra check.

Unfortunately you have to keep eating gluten prior to the gastro appointment so push for that to happen ASAP.

I suggest you start with the Becky Excell book 'how to make anything gluten free' and start the grieving process for bread. Pretty much anything can be made/bought gluten free these days except decent bread.

There's a few good Facebook groups where you often find out about new products etc

Oh it's a zombie thread! How did it go OP?

I got Beckys book a few weeks ago... I love it. I have currently been off gluten for three months and was doing really well. Then I made the mistake of having a kebab after a few drinks (thought I would be ok). That was a week ago and am still suffering it’s been worse this week than it ever has.
The thought of going bk on gluten for a biopsy after this last week I dnt fancy.
Can I ask if u are coeliac or have a gluten sensitivity? And if you do How long did things take for you to be bk to normal?

I felt better after about 2 months. As soon as I had biopsy I stopped all gluten and haven’t had It since. You can’t.

Unfortunately this I am realising. This week has been hellish. Thank you all for the advice

At risk of resurrecting a zombie thread I had an endoscopy in January and was diagnosed with coeliac disease. I'm now gluten free and healing very slowly. I may have some other issues too (extremely high B6 which is at odds with coeliac typically) which my GP is currently looking into. My ALP is very low too and it could be hypophosphatasia. I'm waiting for more test results at the moment.