End of my tether, HELP. IBS, gluten intolerance, something else?

[GidgetGirl]

First of all I am due to see my dr about this but the waiting list even for a standard blood test is insane (3 weeks), let alone how long I’ll have to wait for any kind of consultant referral. I’m just absolutely desperate and could really do with hearing about other people’s experiences.

I’ve had bouts of IBS-D on and off for many years - always unpleasant but isolated so I’ve never bothered to do anything about it. Same with GERD/reflux - I’ve been on lanzoprazole for years and haven’t had any problems since.

For the past six months or so my IBS has been worse - usually having to go 3 or 4 times a day. But it’s REALLY ramped up over the last 3.5 weeks. Sorry to be gross but now my poo is at times light yellow, other times bright yellow or orange. Never had that before. And my reflux, acid stomach and nausea is insane - it’s absolutely relentless even on lanzoprazole and antacids. I’ve got gut pain, often have cramps before I go to the toilet, headaches, and just generally feel like shit.

This doesn’t feel like IBS. I’ve had years of that and I know what it’s like. The nausea and acid with this is horrendous and my poos are just bizarre. I’m struggling to work, even from home, and I feel absolutely horrible. Has anyone experienced anything like this?

Yes, and after many fruitless consultations finally diagnosed with Coeliac.

Did you get excess acid, reflux and nausea with it too? Out of desperation I actually cut out gluten for the first time ever three days ago, although I know that’s not advisable before you’re tested for it. Yesterday I didn’t feel too bad but today is horrendous.

I think I assumed that a day or two after cutting out gluten I’d start to feel more normal again, if it is gluten that’s causing it. But perhaps it doesn’t work like that?

My IBS goes through phases. Usually when I've been slack about healthy eating, no exercise, more stress etc. I don't drink alcohol anymore at all as that makes it flare up. Have you had any changes to diet/ lifestyle at all?

Try the elimination diet for ages. Gluten issues take months and months to heal so if you are having gut issues and you want to find out if it's gluten you must avoid it for months. I mean four maybe more months it sounds like you have really bad gut damage.

I am lactose intolerant. It took months for my gut to be ok after cutting out lactose as it was so reactive and upset generally.

There's a list of the most common intolerances somewhere - I think off the top if my head it's caffeine alcohol lactose histamine etc.

Try talking to a dietician if you can and cutting out the most common for a couple of weeks (yes it will be a boring diet) and see if it makes a difference.

Have you tried the Low Fodmap diet? It's an absolute pain in arse at first but I found it really helped me. You can download an app to help with what foods you can and can't eat (fodmap a-z I think it's called). My ibs and reflux issues were similar to yours, with the yellow poo and everything. Thankfully I no longer have that! I've been a bit lax recently as well and the reflux has returned but bowels still ok. We were away recently and I had lots of 'treats' that has definitely not helped! I find highly processed, greasy and fatty foods are really bad for me. Good fats are ok like avocado, peanut butter. Onions do not agree with me and neither does salad or raw veg of any kind. It's trial and error for a while but that and cutting gluten were the only things that really helped me. Sourdough bread I can tolerate though, as the bacterial cultures eat most of the bad stuff in the gluten.