Hi, Anyone have problems with their ... - Scleroderma & Ray...
Hi, Anyone have problems with their stomach and have to watch what they eat e.g no bread and milk?
Any reason for this ? do you have side effects or has someone told you not to eat certain things?
Hi SandraMarie, Thanks for replying. Side effects are pretty severe and dietician advised me about omitting gluten and lactose from my diet. I know Scleroderma can be linked to Coeliac disease but my last blood test was negative for coeliac. Do you have similar problems with diarrhoa/constipation?- can be an embarrassing subject to discuss.
yes to both, first started when I was about 7, but noone suggested any root cause. It's only since it got as far as my oesophagus that Scleroderma was diagnosed. I still find it odd now, that they never once questioned what might be causing the excruciating pain that comes with the constipation, esp. in a child? Best wishes.
Best wishes to you too x
Hello Helen
Yes, I have a lot of problems with my stomach - but mainly with spicy, rich food and acidic food/drink. I seem to tolerate milk and bread etc ok although I know some people are intolerant to dairy products and wheat!
Do you have Scleroderma?
Hi Helen.
I too have problems with my stomach / bowel problems, and having to watch what I eat - I have found sweetcorn to be a definate no no, foods high in fat and like Anteater some spicy foods. I've found the pro-biotic yogurts (Activia) do help. However, I do take Immodium Syrup on occassions.
I do have scleroderma.
I find probiotics helpful, but I have to say that the yogurts that are so heavily promoted are not of much benefit: the cost of them compared to the number of live probiotic organisms they deliver is extremely high. A far better option is to go to a health food store and buy probiotic capsules - they will typically provide you with 2 billion microorganisms per capsule at a fraction of the cost of things like Activia - and without the dairy products! You can also try different microorganisms to see what suits you best.
I have had problems with my stomach since the start of my scleroderma symptoms, I lost a lot of weight because of it in the beginning. Even with 2 nexium a day I still have problems, I do feel that bread and spicy foods are triggers so maybe a gluten problem, It seems to be different for everyone.
I have scleroderma but I tolerate dairy pretty well. I can't eat spicy or fresh foods. No fruit or vegtables unless I want t stay in the powder room all the next day. I have to admit I over indulge in sweets but they do not upset my gut. I think without nexium and prevacid I would starve. Have a good day everyone!
I have had Scleroderma and Raynauds for 20 years now. I have had Reflux for a long time but was just diagnosed with Gastroparesis in November 2011. It is a motility problem with the stomach and makes it hard for you to digest food. I have had to make alot of changes to my diet. Especially not spicy and nothing with skin on it (like beans and potato skins, also fresh fruit like stawberries and blueberries). I get a lot of nausea with mine and drink lots of smoothies and such. I still get to eat regular food just in smaller portions. They recommend 6 small meals a day.
Talk to a Gastrointestinal doctor and let him know your symptoms. Gastroparesis is very common in patients with Scleroderma. I do take probiotics as well. They really can help if your stomach issues are mild. Definitely research on the internet to see if this might be the problem. Some days even a cup of hot tea with toast will give me nausea and reflux. There are several anti-nausea meds that really help. Hope you feel better soon!
Yes I have suffered with this issue. Hi all, if you have not replied to the Raynauds and Diagnosed Health Issues question posted by Coldtoes [mine-me] would you be so kind as to add your dx. issues there...trying to create a poll to send to the adminstrators so we can see it on one big 'table' take it to our doctors etc. Many thanks, and stay warm!
Coldtoes
Thanks all for advice and support. I have had Scleroderma and Raynauds for 7 years.I started having bad bouts of diarrhoa/constipation and they were becoming more frequent(2010) and prolonged so I went to a private dietician and she recommended gluten free(although it is not necessarily the gluten but other ingredients in wheat products) and lactose free. I am better when I stick to her diet plan but it can be difficult: no fizzy drinks, no dairy, no gluten. Certain fruit and veg are also a no no.Have you heard of FODMAPS(research done in Australia on different ingredients including sugars)?
When my tummy starts 'acting up' it can be so debilitating.It can last 6 weeks and I have to work through it- sometimes going 24 hours without food.
Hello, Yes I have heard of FODMAP and do try to follow the guidelines of it. Many of the items on the "eliminate" I already knew caused me major problems especially the legumes, onions and beetroot. The major food which I have difficulty in cutting out is the dairy. I'm not a big meat eater, so eat quite a lot of dairy, especially yoghurt. I'm now off to make my milky Green and Blacks drinkng chocolate with a good slug of brandy in it. A little of what you fancy I'm sure does you good and it sends me straight off to sleep.
Try the Plan My Food Website.
Yes! I have Rayauds and Sjogrens, as well as reflux and what was considered to be IBS for years. I've had bowel/rectal problems for a long time too, and various surgeries. However, by chance, I've found that eating a very low carb diet, I have got rid of a lot of the stomach pain that had plagued me for years. My GP suggested the low carb (modified Atkins) diet, as I was struggling to lose weight. So, as well as losing the tummy pain, I've shifted 14 pounds in the last few months.
Kathy
I to suffer really bad with this... i could go up to 2 months with the runs and then 4 day constr.. then runs ... i went to the docotors and they just gave me a massive 3 page bothsided of the food i wasnt allowed .. which was a great help (not) i tried cutting everything out for 12mths and ended up being so skinny i lokked like i was goiing to snap any second.. know i eat ost things but have to deal with my tummy etc too ...
I have Scleroderma of Lungs diagnosed Sept 2011, also have had problems with bowels and reflux since December. I was prescribed Lansoprazole 15mg, which was increased to 3 times daily. over the past 2 months I have had increased diahorrea which led to me being admitted to hospital. The Diagnosis was severe bacterial overgrowth in bowel caused by Lansoprazole. Needless to say I have stopped this medication and take an alternative. I always check side effects of any new medication after this episode.
I have Arthritis, Asthma, Depression, Fibromyalgia, Hiatus Hernia, Insomnia, Migraine, Primary Biliary Cirrhosis, Raynauds, Reflux, Scleroderma, Sciaticia, Sjorgren's Syndrome and Telangiectasias - think that's all. The root causes as well as the derivatives. I've had three endoscopy over the last couple of years and also the one where the tube goes up your nose and down into the throat to measure the oesophagus. Also had umpteen liver and heart scans + x-rays, respiratory tests, CT scans, etc. Have stomach problems similar to you Helen. Had to go to hospital once with acute constipation - and they gave me an enimina - gross. Anyway, Lanzoporole seems to work + Peptac Also had a cervical cancer smear and had to have a colposcopy - not pleasant but the results were clear. Had to have a smear every six months for 2yrs then every year for one year and in December the news was I'm back to every 3yrs. Happy about that. Sorry, Helen, again I don't really think I've answered the question. All the best, (:-).
Not what you're looking for?
Moderation team
