IBS and allergies plus intolerances ruining my life and I need to know of effective treatments

[IBSruining]

I haven’t worked in 2 years due to the above. I’m totally fed up. Some weeks I don’t leave the house.

Im prescribed antihistamine tablets , I was advised to buy otc buscopan. I take a lot of laxatives daily to manage severe constipation. Lots of creams etc for awful
skin issues due to it. My allergies I actually manage to totally avoid. I seem to have so many intolerances I keep reacting and the pain is horrendous and I can’t pinpoint everything although have a pretty good idea of lots of things I can’t eat.

Is there any better treatment than what the nhs have advised / prescribed. It’s taken over my life and it’s miserable

What intolerances have you noticed?

Gluten
Bananas
avocado
Cabbage and pretty much all green veg (kale broccoli sprouts spinach etc)
any kind of seeds (they make me really ill)
artificial sweeteners
quorn products
tomatoes

I have diagnosed allergies (carry epi pens) for all nuts plus shellfish and kiwi

I keep having flare ups so I think there must be other things I’m almost at the point of giving up having a liquid diet with something like complan ? and reintroducing foods one at a time to find out exactly

Are you seeing a specialist dietician? Have you tried the low fodmap diet? It should be done with a dietician's advice but from your list of things that affect you then it may be worth trying.

It's run by Monash University in Australia, they have a helpful app which guides you on what you can and can't eat. Essentially you eliminate all the 'fodmaps' (these are types of sugars typically which people with IBS often react to) for c6-8 weeks and then do a v gradual reintroduction process to work out what you can and can't tolerate.

The dietician I saw was rubbish I had 3 sessions then discharged with an info sheet basically telling me to buy lots of processed gluten free stuff and she told me to try soups with rice in and to eat GF porridge every morning

This is a good simple intro guide (and the website has good recipes as well)

alittlebityummy.com/blog/getting-started-on-the-low-fodmap-diet-elimination-phase/

But you should ask your GP for a dietician referral (assuming you've had colonoscopy/biopsy's etc to rule on IBD/Chrohns etc)

Ah that's a shame, we saw a v good dietician who really knew his stuff.

It's worth looking into yourself though as there is v clear science behind it and it certainly helped my partner a lot.

I was told for 3 years I had IBS , I didn’t I had Crohn’s and by the time I wa diagnosed needed two extensive surgeries due to the damage caused - if you haven’t had cameras insist on it

The GP did stool samples I think for calprotectin and something else which came back saying I didn’t need further investigation. I might make an appt and ask as I’m just in too much pain and TMI alert - during a flare up I have huge amounts of clear mucous and literally can’t go to the toilet at all even with the laxatives ??

I think you can join experimental studies with fecal transplants.

https://www.theibsnetwork.org

Have you been tested for coeliacs disease and other auto immune conditions

I mean this VERY kindly. But please get the Curable app and/ or watch Dan Buglio on YouTube. Why you describe is classic mind/ body stuff. IBS is a functional disorder of gut mobility; there is absolutely nothing structurally wrong. Doesn’t mean the symptoms aren’t very real. But the cure is in the mind, not the body. I promise it will be life changing. And I’m least ‘woo’ person on the planet.

Have you considered MCAS?

www.potsuk.org/about-pots/associated-conditions/mcas/

OP, I'd be insisting on a referral to a gastroenterologist. Clearly this has surpassed your GP's ability. You can't go on like this- please say same to your doctor.

These are autoimmune disorders. Has any medico offered you steroids or biologics?

A referral to a gastro with expertise in intolerances would be a good idea (although they are not that easy to find). Or an allergist or immunologist.

WRT the complan idea, when my kid was diagnosed with severe intolerances, he did 6 weeks on elemental formula before we slowly re-introduced food. At one point in time he had 5 safe foods. It might be a good idea to trial complan and see if you get some gut rest. Elemental formula is very expensive--over here it needs a specialised gastro or allergist to prescribe it.

You need to keep going to your doctor until it is sorted. Ask for referrals. You need proper investigation, and a dietician to help you now. Don't be worried about wasting their time. Your quality of life is being severely impacted. Don't downplay anything. Don't just describe them as intolerances as lots over people say this because they feel a bit bloated or just don't like something. Make sure they know that eating is causing you pain. Not just gluten. Sounds like you've had some bad medical experiences, don't let that put you off getting a second opinion. If you can't work and leave the house. Your full time job should be getting better. Don't lose faith. Take someone with you to the appointment if you struggle to advocate for yourself. Keep a meticulous diary, every symptom and how you have had to adapt your life. Good luck op. Sounds truly miserable x

Another vote for the low-FODMAP exclusion & reintroduction diet. It was excellent for me. I was desperate and now I'm doing a lot better.

Btw, OP, I have an annual mini-argument (good natured enough!) with my GP surgery about their 'just buy some Buscopan OTC' advice. I'm intolerant to one of the excipients (added ingredients) to the point of real sickness. (It's acacia, in any form.) So I ask for a prescription instead for Mebeverine from any acacia-free manufacturer eg Milpharm. We get there in the end. I know the GP surgery are just following ICB budget-saving guidelines, so I have to offer some clinical reasoning.

I don't mind doing all the research myself for both the GP and pharmacist, and have done so for years. The point is, medications can make us feel unwell too. It pays to keep an eye on excipients in meds and additives in foods.

Sorry you're having such a rotten time of it

Another voice saying - look at stress or anxiety as a possible cause. Your gut may just be reflecting any other sources of stress in your life.

Do you have the means to pay for a nutritionist/ gut health specialist yourself OP? You need to get to the root cause and it’s clear that you need to work at the gut level. Most GPs don’t know much about this and most specialists will be looking at meds to treat it rather than healing the gut and curing it.

If you can’t afford to see someone who specializes in metabolic health/gut health/nutrition then get researching online and through your library. There are loads of resources available; you’ll just need to be prepared to experiment, likely cut out various foods at least for a while and be patient. All the best ❤️

Another vote for MCAS here - look at Mast Cell Action's website. You could think about a low histamine diet and the SIGHI list is often recommended for that.

I have made a gp appt to discuss some of the suggestions as this is impacting my life so much

Coeliac test was negative although I’m really intolerant to gluten

I was wondering about MCAS too. www.mastcell360.com has a lot of useful info

Could the issues with seeds point towards some kind of diverticulitis?