Another update in my stomach pain saga. Had blood test which has ruled out Coeliac disease, so the GP is thinking IBS. Has prescribed Mebeverine 135mg 3x a day. I’m also to stop eating things with skins like grapes and blueberries and to peel apples, tomatoes, peppers and the like for two weeks. If the pain gets better I can leave off the pills and reintroduce items one at a time. Started the elimination on Saturday, but didn’t get the px til yesterday so have only had two pills. So far have not felt any difference, but will see how things go till the end of the fortnight. I’m a bit puzzled after reading the info leaflet with the pills that it suggests eating more fibre as a lifestyle change, but with this two week elimination, I seem to be cutting back on fibre. Perhaps one of our experts can enlighten me. Have received a surprise appt with a rheumatologist as a result of the GP referral in Aug 23. I saw a private rheumy in Sept23, so I checked with GP and she advised me to go so that I still in the system, in case anything goes wrong. So, tomorrow I’m seeing an NHS rheumy and I’m a bit apprehensive as to what approach they will take regarding my tapering. I had a flare in July at 6mg and after a few days on 11mg I dropped down to 7mg for 3mths. Have just got back to 6.5mg for two weeks. Don’t know who I’m seeing, so I’m interested in their opinion but apprehensive at the same time. Will post an update.
Stomach pain saga- another update and Rheumy appo... - PMRGCAuk
Stomach pain saga- another update and Rheumy appointment
Good luck…
Hi Indigo2417! Things with skins = bad news for IBS. Pepper and tomato skins are particularly irritating, and cooking them doesn't help. I have cut out insoluble fibre and my gut is happier for it. Sadly, that includes wholemeal bread, brown rice and pasta, all of which I was initially advised to increase! After surgery on 3 band adhesions, that advice was reversed! Hope things improve for you soon.
Hi random. This is all new to me. Never really had problems with stomach pains in the past. For years now, I’ve had predominantly wholewheat bread, pasta and brown rice. Lost of fruit and veg mostly skins on. It grieved me yesterday to have the middle out of a jacket potato and pass the lovely skin to my hubby. Will have to go with this two week experiment as the GP suggested and see how it goes, then I assume we’ll have to act accordingly.
The blood test for coeliac is not conclusive - if it is positive, OK, if it is negative, not necessarily. Bit like GCA and the biopsy. However, a biopsy for coeliac IS definitive but must be done while on a gluten-containing diet.
Have you tried a gluten-free diet? That is more relevant really. And sometimes it is wheat rather than gluten that causes problems.
I imagine the elimination diet is to look at specific foods but the first bit should also give your gut a bit of a rest.
Did not know about the biopsy. As I mentioned to Random, this is all new to me. GP rattled through the appt at a brisk pace as I had two other smaller items to mention. Reeled off a list of things to leave out to try for two weeks. I’ve not tried gluten free as we’ve only just got past the ultrasound and the CT scans etc. It’s only now after the last blood test that we’ve reached the stage of IBS. I guess I’ll have to carry on with the two experiment because if GP does ask for a biopsy, I’ll need to have been including gluten.
And it isn't a good idea to change 2 things at once, confuses the issue. Hope you find something that helps.
Me too.
I went through several months of extreme left lower quadrant stomach pain it felt like I had a horse kick me I rarely ate on real bad days I just curled up in bed after a couple weeks I went to the walk-in clinic X-rays-blood tests etc.etc. I nothing I was convinced I had a intestinal infection but nothing found I was sent home with a “good luck”!then one day I had a tooth crack and get infected the dentist prescribed antibiotics and within 3 days after MONTHS my pain went away…
You potentially had Diverticulitis Myfoe or some infection in your lower left ? Could be a possibility . Glad the antibiotics eased it .
Hi Myfoe. That’s interesting. I’m having a crown replaced next week due to something building up inside the gum round the post of the crown. Apparently, there was a tiny trace there two years ago when I had a X-ray. Now it’s bigger and I can definitely feel there is something amiss. However, I think it’s a bit of a long shot to blame my stomach pain on that as I’ve had the pain since about March this year. Mind you, it would be nice if a new crown fixed it as I’d be able to go back to my usual diet. I won’t hold my breath. Glad you got you problem sorted.
I don't think that may be the point necessarily. Maybe the abx sorted 2 different issues?
I had similar problems for about 5 years, all tests neg, all meds useless. After a negative was colonoscopy Gastro advised me to cut out all dairy and cereals for 3 months to see if I had become intolerant. Bingo.....no more problems even when I added back dairy. I now am symptom free for 4 years; I have the occassional high value toast, cake or pudding but avoid all cereals generally. Use maize crackers and broccoli galettes as my bread subsistute. ? Worth trying
The mysteries of the digestive system. If nothing changes in the next two weeks, I guess I’ll be cutting something else out until we find the culprit.
My Gastro went on at length about the cross contamination in cereal production. Making it difficult to be certain one has excluded named cereals, hence his recco to cut the lot out to test the theory.
youtu.be/dnJ2_qdIZK4?si=XL-...
This is part 1. There are 3 videos. I hope you find them useful and that you find a solution relieving your discomfort.
I’ve had IBS since I was 16 and I’m now 72! I’ve really managed it myself and have noted all the triggers. Gluten/wheat/ yeast are definite irritants as is onions and garlic in large quantities. It’s a matter of finding your own way through all of the foods that you normally include in your diet. I’m lucky as we have a French baker in our town who makes low gluten sourdough bread and it’s delicious. It is trial and error so it takes some time to sort it all out. Good luck on your journey.
Hi Indigo2417.
If you have IBSD then yes you need to cut down on fibre. If you have IBSC you need to increase it .
Not only do not eat anything with skin unless I can peel it , I take the seeds out of everything such as tomato’s and cucumber. I don’t eat seeded bread or anything sprinkled with seeds . Nuts are a no no , as are seeded fruits strawberries raspberries etc Since cutting these out this has helped with the discomfort in my left hand side . I always said that things felt stuck and I was diagnosed with diverticular disease last year .
I also have ibsd and have followed a a low fibre diet for many years . Also keep my dairy and red meat low too .
This was given to me by my doctor which helped me navigate low fibre foods
drgarethcorbett.com/wp-cont...
Sorry I don’t think the link works
I hope you get sorted out soon
The link worked for me. Why did you think it didn't?
It didn’t when I first tried it . But it was probably me
This link is interesting. I have been told that bananas are good for IBS and they cause me no trouble, but they're on your high fibre list. Citrus fruits and grapes are not recommended, and apples really upset me. I suppose we're all different.
My dietitian also recommended high soluble fibre foods such as porridge. It's the insoluble fibre that's bad for IBSD such as fruit (especially with peel), leafy greens and tomatoes. Soluble fibre helps to retain more water. I have also read that coffee, even decaff, stimulates the gut. We are advised to avoid any caffeine after midday. So finding something suitable to drink that's not fruit or caffeine based is not easy. Water gets boring! I have bought some camomile tea!
As an aside, when taking pred we are advised to cut down on carbs. Not easy on an IBS low fibre diet!
Unfortunately I can’t even eat porridge or weetabix and I was able to eat bananas until just recently but I can eat cabbage and broccoli. It appears to be different for all . I only drink 1 cup of decaf coffee a day in the morning . I am not fond of water so I was told to drink cordials but as many of these now have sweeteners in them I just have them very weak . Have to have some enjoyment . . 😂
Thank you. The link worked for me.
Hi Indigo, I'm going through a similar thing atm. No pain, but on-going morning diarrhoea. I have finally been referred to a dietitian and had a phone appointment for an hour. In addition I have seen an incontinence physio specialist. She has got me keeping a diary of everything I eat and everything that comes out with timings and a Bristol stool chart score. Doing this has really helped me to realise what is causing my problem, so I'd highly recommend it.
I have cut out coffee (including decaff), fruit including fruit drinks, all alcohol and leafy greens. Onions are a no-no for me anyway. I'm OK on garlic. The dietitian also said I should cut out wholemeal products like you. I now drink water, tea and ginger beer. It's working so well I'm now getting constipated so I'll have to start reintroducing some things slowly.
However at the weekend I had a meal at a friend's house. I took my own mains as she was doing beef bourgignon. I ate the smoked salmon starter and the crumble with no apple. However I was really ill, and I put it down to the pint of cloudy lemonade that I drank. What an idiot!
You need to keep up your diet for a while, let things settle then maybe start trying reintroducing some things one at a time. My experiment early on involved cutting out the white wine I love and replacing with Shloer grape juice. Not a success. So it's the grapes and perhaps not the alcohol.
The dietitian sent me lots of info including 25% off voucher for an app called Nerva which is a gut hypnotherapy course. They are recommending this as it teaches your brain to reconnect with your gut. This has been found to have over 70% success rate in people with IBS. Google it.
Good luck with your own journey.
Be careful of having drinks with sweeteners in it as that exacerbates IBSD . I was told not to drink diet drinks .
I use sweetened drinks, otherwise I would take in too much sugar! I also sweeten rhubarb (which oddly is fine) with sucralose, the same sweetener as in my ginger beer. It doesn't cause any problems.
I’ve had IBS for about 20 years…I’ve learnt what not to eat, but I still waver between constipation & diarrhoea at times! But I drink no tea, coffee or alcohol, & that seems to help me! Good luck, S x
What do you drink? I find water boring after a while.
Me, too. Quite dreadful. I drink no added sugar squash…Apple & mango fave atm…I drink low sugar Ribena every morning (& have done since I was a baby), I like Robinsons lime & mint cordial with soda water…& my new discovery is Belvoir yuzu & mint ready made & slightly fizzy, very refreshing…but not cheap!! I can tolerate fruit well, so Rubicon mango & passion fruit juices. I really dislike water on its own, I can’t imagine liking it…it has a taste, & I don’t like it…but I do try & drink a larger tumbler of water sometime each day!! Most of the stuff I drink is on Sainsburys offer list every few weeks, so I buy more when it’s on offer & none if it’s full price!! S x
I like Belvoir Elderflower and Rose...yum! But like you say it's expensive. Plus we are advised not to drink fizzy drinks. I don't actually like fizzy drinks, never have done, so I open the bottle and let it go flat before I drink it. I used to drink Robinsons No Added sugar blackcurrant and apple squash, but I've been told to stop all fruit for now. It also has sweetener in, though not a problem for me. I use sweetener to stew my rhubarb, and that's fine.
I will try that, I love elderflower! I find soda water less fizzy than lemonade & not sweet, of course! Hm…stopping all fruit is hard. I think I don’t eat/drink many fruits per week…but often I use lemon and/or orange, usually in baking, or savoury dishes. Oh, & apples!! But I cut out a lot of other fruits, hadn’t really thought of that…except the two fruit juices I like! Oh, that is quite tough! Hugs, S x
Many thanks to all who have posted helpful advice. It really does seem to be a lottery. At the moment, I’m sticking to what GP said in order not to confuse things. So, I’m leaving out grapes and blueberries on for breakfast muesli. She said I was ok to have the muesli as long as I chew it well. And, I can have strawberries, bananas and oranges. Peel apples. I have also left out onions. I have a mug of filter coffee in the morning, mug of tea lunchtime and a cup of cocoa later. No sugar. Water the rest of the time. One glass of wine a week and a glass of Shloer at times, but I find that a bit too sweet for my taste. GP showed me the Bristol stool chart, but I rarely have a problem with that routine. I have noticed that stomach pain often comes on late afternoon/ early evening, quite often before I’ve had food. Sometimes it seems worse if I get a bit stressed. Started the elimination on Saturday and the pills on Monday, but no noticeable difference so far. Will have to see this through to the end of the two weeks and then see what I have to experiment with next.
Hope it goes well for you, S x
I have been through this for over 30 years. This year I had Chemotherapy and a stem cell transplant. I suspect I have had issues with a form of Multiple Myeloma for years. I am now showing zero cancer cells. So that is all good. Now I am on what is called maintenance chemotherapy to keep the cancer from returning . Unfortunately, the chemo has now caused a bottoming out of my immune system. There are 3 main factors that are checked on blood work for our immune system, IGA, which is the part that is in our sinus lining and the lining of our digestive system, IGG, which protects us from bacteria and viruses, and IGM, which is our bodies general defense system. I have had two transfusions called IVIG, which are the mixed protein cells that make up IGA, IGG, and IGM. IGG, which is the most important was 66 on me. After two infusions is up to 596. Minimum to have an immune system is 600, so am getting there. Here is where I suspect this ties into your situation and my decades of stomach issues and odd food allergies. IGA, which was zero is now only 5 after two infusions. I am wondering if perhaps I have not had a very ow IGA for a very long time. I have weird allergies to food (peanuts, chocolate, barley, etc.) IBS, diverticulitis, and just a major sensitivity of the entire system. Have been scoped several times. Scar tissue is all they find. So that got me to thinking. Is it possible for some people to just have a low level of IGA. I seem to have constant sinus issues, but CT scan of sinuses shows everything is clear and good. It is something to think about . Our bodies are entire, so it seems logical that an immune system illness will not just attack joints, but our entire system.
My, you have had a lot to put up with for a long time. I’m only a beginner. Until 2019, I rarely saw an GP, now I seem to be making up for lost time. Interestingly, on my rheumy appt this morning, she asked me about headaches and jaw pain, which I assumed she was checking on possible GCA. I do get headaches occasionally, but not I think the GCA type or jaw pain, but I do get sinus regularly. She asked me how long I’ve had sinus trouble. I’ve had it for years, but in the last 20 yrs or so, it often coincides with a 10 minute sneezing fit which seems to trigger inflammation. I know this is probably nothing to do with my stomach issues, but I seem to be getting different inflammation issues. 2022 was shingles. I’ve also got trochanteric bursitis, which Rheumy blames on osteoporosis causing me to hunch over and put pressure on my hips (and stomach). I don’t know what to make of that.
That is interesting. I also get sneezing fits. Do you have stomach issues? I have a surgery for reflux . I had it in 2002. My sneezing fits seem to be stomach related. There is a nerve that runs down the back of the esophagus. It is called the Vagus nerve. Vagus nerve irritation causes either sneezing fits or the hiccups. In my case sneezing fits. I work very hard not to overeat. I eat nothing past 6 p.m. in the evening. I lost 27 pounds so far from chemo. Not a diet I recommend!!! I have had jaw pain when I chew for ten years. Rheumy tried to wean me off of the 5mg. pred. this past fall. It was a disaster. I did okay at 4.5, but when I got to 4 the illness came roaring back. I have crappy chromosomes. I try to make the best of it. I have osteoporosis also, but refuse the meds for it. They can cause a lot of problems and I am a poster child for med side-effects.
I have not had stomach problems until this trouble started around March this year. My sneezing started around 1980, when I was on holiday and developed hay fever which continued to year round allergic rhinitis. Have never had tests for what triggers the sneezing fit, but they’re generally abt 10mins long. This last year or so I’ve noticed sometimes if I have a coughing fit, it will trigger a sneezing fit. I was having Beconase for it, but GP earlier this year wasn’t keen on me using it continuously, so now I use a nasal wash every day. If I get sinus headache, I sometimes have a Sinutab that has paracetamol and decongestant, but I don’t use them a lot. Also, I use Olbas oil to help clear my nose and sinuses. I had got down to 6.5mg of Pred at a steady reduction every 4 weeks, but hit the buffers on 6 in July. I went up to 11 for a few days then 7 for abt 30th before doing a 5week taper to 6.5. Am going to stick on 6.5 for a bit, particularly as my hubby is having an operation on his foot just before Christmas and will be on crutches for 6 weeks. I shall be doing a bit more because of that, since he usually helps me with housework etc. Fortunately, we were not planning a great deal of socialising over Christmas.
They don't last as long but I occasionally get a coughing/sneezing/choking fit for a few minutes. Most peculiar and very embarrassing!!!
What's housework? I have a cleaner for ONE hour a week - OK, it is a very small flat, but she vacuums which I cannot do without my back going nuts and one other task. Do what you can do without damage. Yuu can do quite a lot when sitting. And a chair with wheels would probably let OH use a vacuum cleaner ...
"I don’t know what to make of that."
Something akin to baloney methinks!!! I don't have osteoporosis and have had trochanteric bursitis for YEARS - it is commonly part of PMR. Unfortunately, it doesn't respond particularly to oral pred except at higher doses but a steroid injection can be a miracle. There are also stretches that can help to some extent and the rehab guy I have seen for years here says they are an essential part of managing it.
myhealth.alberta.ca/Health/...
Yes, I took it with a pinch of salt. With hindsight, I think the shingles that I had in 2022 and then trochanteric bursitis were a precursor to the PMR. I had been given physio exercises for my back after the osteoporosis was found. Then got some additional exercises I think, because of the osteopenia in the hips. So at the time I was walking abt a mile in the morning, then doing abt 40mins exercises and then doing day to day routine. The whole combined with a bit of stress was probably when my system said ‘enough, I’m packing up’. After hurting my back again earlier this year I have now started doing some gentle exercises 3 times a week with a walk about once or twice a week. I want to build up my strength gradually. I’ll need to be careful after hubby has his operation as I mentioned above.
Well THAT lot would make my hip bursitis grow wings!! Not unreasonable to think that the shingles upset your immune system and the TB was the first noticeable manifestation of the PMR - it was a major part of mine and still is.
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