Another gastric flare-up

[bcbg57]

Hi everyone, I'm new here, although I did participate at the conference and Agm in January, which by the way was great (thank you very much Jess). Just checking in today because I'm a bit fed up about another gastric flare-up. I have been referred to Professor Aziz by my GP but have to wait to see my local gastro-enterologist to have some more tests first (for MCAS). I have had many episodes of stomach upset and diarrhoea over the last few years resulting in low weight and low BMI, and often ending up in A&E to be re-hydrated. I have got better at managing it over the years and manage now with three laughably small meals a day of potato and carrot or potato and courgette (sound familiar anyone? It usually takes a week to settle down and after that I can introduce soup and a lightly boiled egg. I suppose I'm just annoyed because I think the trigger was some high protein and high calorie smoothies I had been prescribed by the dietitians my GP had referred me to (I also see a nutritionist privately, and have done for years - in fact she was the one who led me to MCAS, not my GP!). These smoothies have 17g of sugar in them so I should have realised that that was far too much sugar in one shot, but there you go, easy to be wise after the event. Anyone got a similar experience? Any tips about how you get through trials like this? Just feeling a bit meh!

[Tiggerakafidgity]

Yup I know exactly how you feel.

I usually live on Morrison’s fresh chicken and veg soup.

About 6-8 yrs ago I fractured both my ankles.

I felt so low it was untrue.any way I was on the toilet about 17 times a day with diarrhoea then bile at the end of the day.

My then wife suggested cutting out gluten which I did.then I was put on a fob map diet which was mainly what I was on.

The gastroenterologist dept are absolutely bloody useless.you get see by a student listens to what you have to say then the consultant comes in looks at me doesn’t write anything down.I tell him my problems and he just blankly looks at me.I tell him the diet I’m on and he says with an annoyed tone that’s for diverticulitis.

Then I just get hurried out.

I’ve had loads of endoscopies with them stating,can’t go any further it’s blocked.that happens every time.

So then we get to mcas and now I’m thinking my inflammatory markers which have always been tested once a year and come back fine.all the trips to the toilet.the pain in my stomach comes around to mcas which was diagnosed by our accident from the audiology medicine team.

All my symptoms I thought were from my benign tumour I’ve in my head but the tumour isn’t big enough.

Talk about being in the right place at the right time.

So now I’m like,well I’m ok my own with this mcas and help what do I eat ahhhhh.

[bcbg57 in reply to Tiggerakafidgity]

Hi Tiggerakafidgity, thanks for replying and for acknowledging you know how I'm feeling. Your comment about the chicken soup really hit home. As I say I see a nutritionist and I have done for years and I am gluten free, dairy free and she's very hot on low sugar which I am struggling to get my head around. Also non processed food. It's all a bit of a nightmare really isn't it. I also think it's ironic that I seem to have got so ill again this time after eating smoothies recommended by the dietitians. You just have to try and work out for yourself what works for your own body!

[Jess-UKMasto Partner]

Hi BC. I'm glad you found the AGM/conference helpful! Dr Aziz has given us the go-ahead to share the video of his presentation and Randy is working on getting that edited to go up, in case you want another watch. (I know I do!)

Regarding diet, I don't have your specific experience, but diet is certainly a part of what keeps me functioning. For me, when things are bad I have to revert to white rice for a day or so and then reintroduce anything difficult to digest. I react to cow dairy, wheat and egg (among other things) so smoothies and the like don't work for me. Plain real food over things with multiple ingredients make the investigative work easier.

That said, when my gut was in horrid shape, Nalcrom was (I think) what helped it heal so I stopped reacting to new foods. I also rotated my shorter list of foods for a year or so, so I didn't have any one thing too often. It was annoying, but I have been able to maintain my shorter list (but not totally restrictive list) of foods for 20+ years.

Have you had the opportunity to try a mast cell stabiliser? Ketotifen could also be discussed as one common side effect is weight gain ; ).

[bcbg57 in reply to Jess-UKMasto]

Hi Jess, thanks for replying. I will ask my GP about Nalcrom and Ketotifen. I had a good few months and now am once again losing all the weight I managed to put on. Being around the 39 kilo mark is not good!

[Jess-UKMasto Partner in reply to bcbg57]

I expect that by the time you get them prescribed the Nalcrom will be back on the market, but it's out of stock until the end of April. I'm sorry things have been headed the wrong way again!

[konak in reply to Jess-UKMasto]

I am having a lot of digestion issues lately. It would be very helpful if you could have your list. I don't eat meat so makes it even more difficult.

[Mothertay in reply to Jess-UKMasto]

I would really like to see your list as am having lots of gastric problems too at the moment. Worst I have been for years. I have recognised that egg is a problem, but last night had a reaction to cheese which is new for me. I am on nalcrom and waiting to speak to consultant about increasing dose to try and get things back under control.

[Jess-UKMasto Partner]

I'm not terrifically comfortable sharing my list because over the years I've never met anyone else for whom it was the right list of foods. It more or less consists of things I wasn't eating when my GI tract was in bad shape. Nalcrom was the key starting point to getting back to having my gut be in a better place. In the first year after I realised that foods were a huge issue I was really boringly regimented about what I ate and tried to only have a particular food only one day a week, so would sometimes have a version of the same thing three times a day. The theory was that if you don't overdo a food then maybe you're less likely to develop an issue. But that's a theory and the fact that I haven't developed new intolerances isn't really evidence that the strategy worked, because it could also have been Nalcrom or something else entirely. I think it's fair to say that a good number of people do better without wheat and gluten, cow dairy, and eggs--- but for some those are fine and for a good number an important part of a limited diet. I don't want to encourage the dropping of foods if you have a tiny list either, because malnutrition is a serious concern as well. Regarding cheese, Mothertay, before I stopped having cow dairy I had already figured out that fermented things were an issue and had dropped out older cheeses. I still find if I'm in a more reactive time that young cheese is the better tolerated. (I can have some sheep and goat dairy, but not in large volumes.) Whether this is histamine content or tyramine content (blue cheese was a trigger back then) I don't know.