Gastroparesis

Hello. Gastroparesis means the stomach works very very slowly and really struggles to digest food. You can feel it sitting in your stomach going nowhere for hours. I have helped myself somewhat by liquidising as much as possible and I never eat after 5pm or I cannot sleep. It is just yuck!

Thanks Maggie,

Do you get severe heartburn or chest pain from this? Bloating?

I certainly get bloating but because I only eat very small liquid meals I don't get heartburn or chest pain. I avoid all fried food too, very, very boring indeed.

Hi Maggie,

By liquid meals, what do you mean? Sorry im asking so many questions on your forum. I just having a hard time getting nutients in

I put all my food in a liquidiser, well breakfast is very, very runny oats topped with hot water, a spoonful of ground almonds and a spoonful of freeze dried blackcurrant powder left to cook for ten minutes then I add yoghurt so it is super soft. That is actually quite nice. Lunch would be a handful of salad leaves, a mango, an avacado, almond milk all whizzed up in the liquidiser. Sometimes I add spirulina but it is pretty strong so I have to be in the mood for that! In the evening if I can manage anything it may be a couple of poached eggs on a mashed avacado or just a spoonful of peanut butter whizzed up with almond milk. Lovely!!!!!

That should have read left to cool not cook for ten minutes

Thanks Maggie! Im going to try. Textures have become an issue for me and I will be tested for food allergies tomorrow

Oh it really doesn't sound easy I must say. I can't bear anything cold going down me now but the oats breakfast sounds good - quite like spinach and watercress soups. Have you tried Koko milk rather than almond at all. I have lost so much taste that I don't notice the subtle differences now but, after years of almond milk the AIP diet got me onto pure coconut milk instead and my husband says it's much nicer? 

Yes I mostly use the Koko as I like coconut but like you my taste is so off it might just as well be water! Every now and again I can taste some small thing and it is so lovely but it goes in a flash. Mealtimes are just functional now rather than a pleasure which is sad. I discovered soy ice-cream the other day in chocolate flavour and the first spoonful was delicious, after that I couldn't taste it at all. Let me know if you have a special something that still tastes good.

Good luck for tomorrow. I hope they find things that prove really helpful.

A crepe (soggy!) dripping with spinach and mozzarella tasted fabulous the other day after a prolonged spell on toilet and a dog walk (new laxative) but then I tried making one mylelf but could taste nothing and then couldn't swallow it either?! Like you, sometimes I get glimpses of great tastes but then they elude me minutes later? Hot Ready Brek with nutmeg and honey is good and hot runny custard. Hot vegemite works well for me but I can nibble or dunk rice cakes or even fine oatcakes so that helps. I love cheese and omelettes - liquidised might not like them much though but it may come to this. Dark strawberry chocolate nibbled or dipped or just sucked slowly with a cuppa is nice

Cold food gives me oesophageal spasms so Ice cream has become a no no - which i find really sad!! X

Dysmotility that should say! 

Thank you for taking the time to reply. I share a lot of your issues with food and neurological involvement, foul taste in my mouth, losing my taste and sense of smell etc. I was referred to a dietician and I explained very carefully that I cannot tolerate anything with animal protein as I really cannot digest it. She said she understood but as I have become officially underweight she said she had a protein drink that would suit me. Well, I took it to the beach with my dog and decided to try it without reading the ingredients because I didn't want to dismiss it out of hand so to speak. Within half an hour I was vomiting on the sand!!!! I then read the ingredients and it was 100% flavoured whey protein. I haven't been back to her because that is pretty basic knowledge. We are up against it from the bottom up, in all senses of the word!!!😁

Hi Tumtum,

This has been very helpful to me, not sure about Maggie. I will request a nutritionist as little by little im building a hate relationship with food. I too feel like i have an eating disorder but don't. I do want to eat sometimes but the dry, numb itchy feeling I get in the back of my throat makes me give it up quickly. I wish I could enjoy meals again.

Oh no that's awful! We really are up against it I agree. I'm on Mycophenolate 3g daily and this seems to have helped my balance issues a lot and made the inflammatory arthritis in one hand disappear. But as for the rest I'm really not sure? At least I no longer have hypertension or trace blood and protein in pee but that could be the weight loss from my issues with food? 

I think this neuro type of Sjögren's is very isolating. I see others mainly speaking about dry eyes and mouth but for me even this seems neurological rather than anything topical meds really address? Sometimes I think it would be easier to have my RA diagnosis back or have MS because at least doctors and friends would know what it was and what  to expect.  

Are you on anything for the systemic side of this disease? 

Oh I know - it's like the pleasure goes out of life if food becomes a trial? Nutritionist or dietician might help if you can find a good one. 

You're neurological symtoms seem more like mine but I'm still in the process of a full diagnosis

Tatum this is so interesting. I was diagnosed with vestibular migraine and take the anticonvulsant topiramate for this which has helped me enormously because I was so unbalanced and dizzy I had to walk with a stick, could not clean my bathroom without spinning and vomiting and then sitting down for two hours. I also have erosive arthritis in my hands and feet for which I was prescribed hydroxychloroquine. I also have an arrhythmia, orthostatic hypotension, peripheral neuropathy and the latest cataracts! I have all the very, very dry symptoms as well but I am now wondering if the vestibular issues were all part and parcel of SS. This is yet to be confirmed, the lip biopsy is in two weeks but the consultant who is going to perform it is convinced I have SS. I also, rather worryingly, have solid, enlarged lymph nodes in my neck and a string of pearl like nodes in my groin for which I am awaiting a scan and biopsy. All in all I seem to have the whole blooming lot.

I found once I got Gastroparesis (paralysed stomach) I lost all sense of hunger. No hunger pains at all. If it was not for my husband saying I needed to eat i could have happily gone for days and days without food.

Unlike you ladies I don't seem to have lost my taste sensation although my tongue used to be very sore (geographic tongue) and these days I still have times when the tongue feels burning but not too bad.

Are you taking any Prokinetic? I take Domperidone (Motilium) but I don't think it is approved in the UK. It has been excellent for me. Not game enough to try going off it even though my Gastroparesis has improved gradually. I can now eat solid food....whoohoo!