Update to last ‘Omeprazole is killing me’ post

[Friendlyfart]

It helps to write it out in here as I probably bore DH rigid with it all, although he is sympathetic.

I spoke w my GP who had the latest Calprotectin results from the hospital which were even higher at over 2000. She said the high numbers just don’t match the level of inflammation shown on scans and camera tests. She said to ‘experiment’ w the omeprazole - I went down to 10mg, then 10mg x 2 a day now back up to 20mg in the morning and feel ok so will stick to that for a bit.

So back to the GP - she was concerned and said she’d chase up the gastroenterologist to see results next steps and check she had all the biopsy results to hand.

Yesterday the gastroenterologist called me and I don’t think he was happy to have been chased by the GP but at the point of calling her I had no follow-up appointment and no idea what was going on. He said they ‘weren’t concerned’, as I am maintaining weight and have appetite, but they don’t have an answer for the high calprotectin and tbh I don’t want any more invasive tests currently. I’m not sure what benefit that would provide.

I made sure I told him about the explosive wind issues and that my stool is normal usually but I do get the wind problem flaring up every few weeks.

I’ve got an appointment now in May and I’m going to take DH with to be a bit more pushy on my behalf.

That’ll be nearly 4 years since all this started. I just want to eat (semi) normally and not worry about what my bum will do when I’m sitting in a theatre etc!

Oh poor you, that sounds awful and I can sympathise as I really suffer if I eat a lot of gluten.
Have you tried eliminating certain foods from your diet?
I’ve been on a healthy diet for the last six months to lose weight and have mainly eaten protein, fruit, salad and veg and rice or a small quantity of potatoes rather than bread or pasta.
Pasta and pastry really upset my gut with the same effect as you and is really uncomfortable for a few hours.
Do you know if anything triggers your problem?

What tesyts have you had. Have they done a pill cam?

Would you consider an elimination diet to see if certain foods are causing your problems? It could be something like onions or as pp said, gluten,

I developed gut issues (diarrhoea and wind) and had a Calprotectin of nearly 5000 and it turned out to be wheat that was causing it! I only discovered it myself by doing an elimination diet. All the issues disappeared within a couple of days of stopping wheat, so I now avoid it (and anything with gluten) religiously.

It's a really good idea to do an elimination diet OP, because even if you think you are fine with all foods, you could have developed reactivity to one or more.

Can you please link the omeprozole post . I’d like to read it . I’ve been taking 20mg a day and am trying to wean myself off it . Thankyou

I’m no expert at all but with dd it was coeliac disease which I’m assuming they’ve ruled out?

I know you said you don’t want invasive tests but in your position I’d be pushing for tests as I’d want to know if it was something like IBD, Crohn’s disease, etc. I think high calprotectin can sometimes be cancer as well. So I’m surprised the gastroenterology dept aren’t investigating it more. What tests have you had?

I haven’t seen your first post so sorry if I’ve misunderstood anything.