Gastroparesis

[flowflow]

Does anyone here have this due to sclerderma? If so how was it diagnosed?

[Hidden]

I do; although I also have EDS which is also linked to a higher incidence of it so I’m not sure which caused it (or both). I went to see a gastroenterologist referred by the EDS consultant. She was a specialist gastro in London who dealt with EDS referrals a lot. I was helped a lot by a friend who had paresis as there’s a lot of good advice on coping in the meantime re. Avoiding fibre, small meals, don’t drink too much water with meals, eat slowly and chew a lot, that sort of thing. Good luck x

[flowflow in reply to Hidden]

How did you get it diagnosed and what symptoms do u get with it?

[Hidden in reply to flowflow]

I was diagnosed from the transit test - I had lots of other checks for other things, at one point they visually saw inflammation in my gut (showed me it live!) and said “there’s your crohns” but then the biopsy didn’t confirm it. With autoimmune you can get inflammation that blurs the picture. I basically felt mechanically sick after meals & burp (sore stomach too; felt like I’d eaten rocks). Other symptoms that settled with diet and management were: passing huge amounts of blood; severe diarrhoea; massively distended stomach; also pain - I don’t know if those were paresis or the inflammation though.

I live fairly normal life with a restricted diet and motilium tablets to help my digestion move x

[flowflow in reply to Hidden]

That's fascinating as the exact same happened to me. On my first coloscopy they found inflammation and also diagnosed crohns and treated for it but treatment didn't help and biopsies didn't back it up. They did slow transit test only because I had horrific pain high up every time I ate so they thought gallbladder was failing and the ultrasound found after 16 hours fasting my stomach was full (tech was mad I hadn't fasted and I said I had lol) I still get pain after every meal, food comes back up, I feel nauseous all the time. Then I will get severe cramps and diarrhoea and also blood but was told it's IBs lol. I finally got referred back to gastro and he won't budge from Crohn's disease and I know it's not that!! Just want to know how to manage it as I'm certain it's gastroparesis but getting the gastro to diagnose is so hard. I insisted on the egg test after reading about it online and figured surely then they couldn't say crohns

[Hidden in reply to flowflow]

It may well be more than 1 thing going on? It’s worth switching to a no-sugar autoimmune protocol to try to get your symptoms under control (re lower down) in the meantime. Hopefully they’ll see the slow transit and address it. As I said, I take motilium (domperidone); could be worth asking f you could try that to see if it helps? If it does, it goes some way towards evidencing what you’re experiencing!

[Gillg]

I have it and I was sent from my Rhumatologist to a gastro specialist who did various tests including one of those tablets you swallow and they’re tracked. Nothing helped me I’m afraid and it took over my whole life till in the end I had an Ileostomy which has given me life back again.

[flowflow in reply to Gillg]

Hi Gillg thanks for your reply. I'm under gastro at the moment. They have done a slow transit test which showed positive slow transit. They have just done another colonoscopy and gastroscope but told me they are doing it to rule out crohns and colitis? They said both looked clear but I had to fast 22 hours. I had it under a general. I've also had an egg test but awaiting results. Just wondering which test actually diagnoses it as my understanding is the gastroscope doesn't diagnose but rules out other stuff?? Is that right?

[Gillg in reply to flowflow]

I think you’re right. There isn’t really as far as I know a test to prove it. It’s more well it isn’t anything else so must be gastroparesis nothing helped me I tried every diet and exclusion. Medicine worked for a short while but my body seems to get used to them and they stop working. I was virtually housebound as my food would back up for days. Then with no warning I would be dashing to the loo 10-20 times a day. Because of this my potassium dropped seriously low and I was admitted to hospital for suspected blockages. I can’t say an Ileostomy is an easy option but I would do it again if I had to.

[8whitetoes]

I can tell y'all for a fact !!!! Refined sugar - refined sugary food's - (like many of the kids breakfast cereal's) .... THEY will RIP ME A NEW ONE !!!! LOL 🙃

I have had more than my share of Upper and lower GI's .... Told To NEVER EVER use any kind of Nasaid ....

Told every thing from ""it's just in your head"" too It's a *Gastrointestinal* - IBS - you will get better after menapause - *Not Chrones* - ""Stay away from all gluten"" - No GMO - ....... I remember one of my elder sister's (ALWAYS had TOO mix a powder EVERY day TOO drink (my poor sister was alergic to EVERYTHING !!!!!) She crossed over 2 years ago.... After some research I finally found out , she was on a yeast Free diet and used *Nystatin* every day..... (It's so sad the food's in the U.S. has so much *junk* , an additives in it , every single adult should have **Horrible GI issues** .... Many do but don't know why ...., ""It's Stress"" - ""Depression"" - take these pills you will feel better!!!""" ..... Instead of The PCP doing their best to find the answer ..., (An it is not Their fault ...., They too are pushed TOO see X number of patients in a day .... So it's a Constant circle of WTW??? Too do ....) ..... And if you don't activity **search for answers** TOO on W.W.W. ...... Heavn help would any answer be found ????

But I tried for a couple weeks ..., No sugar , no gluten, no yeast , I got a script for *Nystatin* .... With the Good Probiotics .... (Capsules) ..... I used raw honey instead of sugar .... An I did find my GI feeling better .... So I tried again a kids Ceral .... And I have been paying for it !!!!! .......

But the hardest part ...., Now is TOO convenience **those I have to live with** ..... "" Look we got too put a stop * too all the over refined process food and refined sugary food "" Let's get it out of the house !!! For everyone's better health ....."""

An I know it will be a Battle ..., But in the end .., why can't we just help out each other ???? .....

[Lupiknits]

Thank you for this interesting thread. My gastric problems preceded any other diagnosis, and continue to this day. Very limited in what I can eat, or it backs up (bad experience if you've just taken meds). I found that cutting out any kind of nut has helped in quelling the diarrhoea, but my various meds causes a great deal of constipation.

I'm close to EDS on the scale, too, and have been told off for eating before a gastroscope when I hadn't.

Very hard to know quite what to do when my BMI is 16.5 and the meal replacements on offer are a very unpleasant mix of artificial ingredients. Eating slowly makes me savour then reject the flavour!

[Mylreaclairelee]

Is this the same as GAVE (Watermelon stomach) which I have? Blood was found in stool tests done by the bowel screening programme. Then endoscopy or gastroscopy discovered the reason. Blood leaking into bowel and thru the walls so potential iron deficiencies and low ferriten levels.