I have managed my Coeliac disease since 2009 but last year had a colonoscopy which confirmed my new symptoms were IBS D!!
I struggle to know what to eat and feel my quality of life has taken a dive. I have never been someone who gets down but this is seriously effecting my mental health. Two weeks ago my doctor prescribed 10g Amitriptline two hours before bed to slow down my bowel. Not really working and I can double the dose but don’t like taking drugs. Does anybody else use this medication and should I keep going with it?
Thanks
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Mollydav
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I am so sorry to hear about your situation and that your quality of life has taken a dive.
May I suggest that you contact a 'dietician' to see what they could suggest in terms of what you can or cannot eat and they may even recommend the FODMAP diet.
Unfortunately I have no experience of the medication you have been subscribed. I avoid medication altogether apart from some pain killers that I take when my back is playing up, but even then they don't really help and wonder why I bother.
I do have to admit that I also take vitamin D and Magnesium which helps me feel more positive and helps with sleep. May I suggest also that you take 'multi-vitamins' to ensure that your body it is getting all of the minerals and vitamins that it needs to function on a daily basis. Why not keep a diary of what you are eating, when and what happens when you have to go to the toilet. After a few weeks you will begin to get a picture of what is going well/not well for you with what you are eating. Drinking plenty of water will also help to stay hydrated!
Be kind to yourself and spend time outdoors/countryside if you are able. Get plenty of rest/sleep and ensure you do a least one thing that you find pleasurable each day.
Thank you for your reply . I am very careful with what I eat and have been following the Fodmap diet as best I can. My gastroenterologist suggested that I cut out high fibre foods including beans pulses skin on veggies. I find this restricting and not sure if this is the reason I feel unwell at times.
Another follow up with GP soon and hopefully more tests.
Mollydav, I have certainly found that lower fibre foods have helped me gain at least a small advantage with managing my IBS -D.
I upped my protein (fish and eggs in my case) and find those gentle on the gut. If you eat meat, that might work. Those foods have zero fibre and will often settle my gut.
But even so, there are days when my gut will still play up no matter what I eat.
Skins, pulses, beans lentils play havoc with my IBS, I don't eat meat at all and like you, I wonder what to eat at times. I don't have Celiacs though, and I don't know how you're managing. It must be awful for you. I get that fed up at times, I just eat porridge for dinner for a day or so as I know I'm safe with it. My advice is to steer clear of processed foods as much as possible, make your own meals from fresh raw ingredients, eat seeds if you can, they are a life saver for me. As many vegetables as you can tolerate, steamed is best. I bake my own bread adding a teaspoon of Flaxseed and a teaspoon of Phsylium Husk, it's really helped to regulate my bowels. Still not without symptoms but a lot better than I used to be. Good Luck
Did you have biopsies taken during the endoscopy do you know? There is a condition called microscopic colitis (which is more likely to happen if you have other autoimmune conditions) and has pretty much same symptoms as extreme IBS. Also, has your GP considered Bile Acid Malabsorption (needs a different test called a Sehcat scan). Both of these have treatment options, but will I'm afraid involve medication.
I'm personally delighted to have any meds that make life a bit more bearable
If these are ruled out, your consultant/GP could consider a drug called Ondansetron which is prescribed off-label but has the same the same effect of slowing down the gut transit, but with much less symptoms than something like amitriptiline (which I hated with a passion as made me feel really woozy).
Goes without saying I assume that you are neurotically careful re gluten? (speaking as one coeliac to another :).
Thanks for your reply. No biopsy as my gastroenterologist couldn’t find anything suspicious!
I have a follow up phone consultation with my GP in 10 days and will ask about other tests and meds. Thanks again for the information, it’s a mine field.
Hi there. Microscopic colitis can’t be seen by the eye - they need to take random samples to biopsy. Might be worth a mention. Here’s the info (same site had good info on bile acid malabsorption):
The thing with microscopic colitis is that it CAN'T be seen without a biopsy being taken and examined under a microscope. It's invisible on just a colonoscopy.
Interesting. I was unaware that microscopic colitis had a correlation with other autoimmune conditions. A colonoscopy in 2018 revealed microscopic colitis, which as you suggest is only visible under a microscope. I am a similar age to Mollydav. I also have Reynaud's, which is autoimmune and manifested itself in the late 90s. On a more positive note, I have learned to manage my D to some extent.
I am also a celiac, but with IBSC I did go through a spell of IBSD back in 2020 and was diagnosed with BAM. But can't take the meds for it, as I'm back to the usual IBSC and it would make ot worse. It is unusual to have IBSC with BAM and I have never come across anyone in the same position. I take amitriptyline for fibromyalgia. It made me very tired for about the first 3 days, but in my case was worth it. It helps but I still struggle and like you my quality of life is poor. I only leave the house when iv got to. I don't like to be far from the loo., and in pain and exhaustion most of the time. I have lost all my so called friends cos I never want to go out. Even my husband tells me to stop moaning and deal with it!! What does he think I'm trying to do.
I’m really sorry to hear that. And I’m sorry your husband doesn’t understand. It’s an awful thing to deal with. I went from a very active 54 year old who cycled upwards of 6000 miles a year. To a virtual recluse. The unpredictability plus the chronic pains and the fatigue and nausea just make you want to stay in.
I now use amitriptyline and I have got to say. They are the one medicine that has helped. I now go out a lot more. And don’t suffer that Tenesmus like I used to.
I really hope uou find some relief soon. I hate when I come on here and hear how people are coping or not coping. Unless you’ve been there you’ll never understand. Good luck
Thanks for your advice, I really appreciate your messages and it’s good to know I’m not the only person who hates how IBS and stomach problems can restrict life. Take care.
I noticed some people recommended taking vitamins but I would be very careful because high doses of vitamin C, B and magnesium can exacerbate your symptoms. Magnesium is like rocket fuel for me so supplements can be dangerous without blood tests to know if you are actually deficient otherwise you are just taking things your body doesn’t need and upset the bowels x
This might sound weird and I don’t know why but I found that the liquid gaviscon slows my system right down and stops the crazy toilet issues I only take a small amount and it helps. Not sure if that’s just my weird body but it’s worth a try x
That is an idea I had never considered. I will give it a go, it could be helpful when I have to go out. Loperamide is not always very effective for me any more.
Hi I have been taking Amitryptilline for many years (one at night) and not sure that it helps at all, in fact I am going to try to come off it as it apparently can cause excessive sweating which I suffer with quite badly in the summer. A colonoscopy I had recently revealed a tortuous, loopy colon which accounts for my terrible constipation and the advice was to take lots of laxatives to avoid constipation!
I have noticed that you can also become addicted to Amitriptyline according to the information I received from the GP. I will certainly only continue if it makes a significant difference to my symptoms.
Hi first of all I’m sorry you are suffering. I use amitriptyline. And at the beginning I was very reluctant to use it. Now I started on 20mil and I’m now on 25mil. And I have found it has really worked. It takes a while to get in your system but once it does I have found it’s been a great relief. I also use 2 sachets of Molaxole for the constipation I now get.
I suffered with IBS/D for nearly 3 years. And it was that bad I lost my job and basically my life. I just stayed in a lot. But it was some one on this site told me to persevere and I’m glad I did. Don’t get me wrong it’s not perfect and I still have problems. But no where near the way they were before.
I really hope you find something that helps. It’s a nightmare thing to deal with. Made worse by no one understanding it. Take care.
hi yes I use the same medication and couldn’t go out and about without it. I don’t have coeliac disease but am wheat intolerant which is very limiting. I eat porridge, rice , potatoes and oatcakes and have put on a huge amount of weight but that’s life.
I realise it’s difficult with more than one condition but I do have a really good GP and can refer back to the gastroenterologist if necessary. It’s early days for me so think I need to continue with the drugs and restricted diet. Certainly don’t want to gain any weight as I’ve been a stranger to exercise since all this happened.
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Ibs
Is this IBS? 
