Hello all
(Quick background) Diagnosed Limited Cutaneous Systemic Sclerosis and Secondary Raynauds.
Saw my rheumatologist today and spoke about my worsening GI symptoms, she suspects bacterial overgrowth in gut/intestines.
Just wondering if anyone could shed any light on this? What treatments are available? Is it curable?Thanks in advance 😊
Look up SIBO in healthonline.com. It explains it and also has some interesting ways to cure it which could be worth discussing with your consultant.
Hi,
I have SIBO. It's been a nightmare and it's made me very poorly including having got malnourished in 2017. My guts are very slow and I can get a lot of pain which is typical after having eaten, so I take buscopan or mebeverine if the pain is bad. I will have to take Metronidazole for the rest of my life as I can't get rid of it. Antibiotics are how you suppress it, and I take probiotics at the same time. I had a positive methane breath test, which is the harder one to treat.
Hiya, I suggest you read The Plant Paradox by Steven Gundry, MD. Currently healing my gut using his protocol. Never going to look back! Already noticing my Raynauds lessening. take care!
SIBO treatment is antibiotics, which I took last year. Recurrences we very common. I’ve been following the IBD-AID diet since June (after I took the antibiotics). The diet seeks to starve the bad bacteria and feed the good bacteria and was developed by a Medical school in the US. So far, it’s helped me tremendously. Good luck!
Hello Newbie, I have recently been diagnosed with this problem after nine months of struggling with issues around my digestion. I’ve also had a prolapse uterus, been diagnosed with urine retention (have to catheterise twice daily) and dirviticular disease. I’m not sure if they are all related. I found your diet on the Massachusetts medical school website but not much mention in the UK. Did you consult a nutritionist or dietitian? Im nervous without some guidance. Just started three weeks of Ciprofloxacin and would like to do something to ensure it doesn’t keep recurring. It’s the nausea and exhaustion that’s driving me mad. By the way, I have UCTD with signs of limited systemic sclerosis and see professor Denton’s team.
I would be grateful to hear how you managed the diet. Many thanks
Sue
I’m sorry about everything you’re going through, but glad that you’re gaining an idea of what’s going on. That’s a necessary first step.
I have not worked with a dietitian or nutritionist about this, but I am pretty science see and read a lot about nutrition, so I didn’t feel terribly intimidated. A few years ago, I followed the low FODMAP diet and found that much more difficult to follow and I felt that it was a much less nutritionally balanced diet.
Before finding this diet, I actually followed the specific carbohydrate diet (SCD) briefly. As the UMass Medical School website says, The IBD-AID diet was developed from the specific carbohydrate diet. I did buy a couple of books about the SCD, which made it easier to start the diet. The first was Breaking the Vicious Cycle, by Elaine Gottschall, creator of the SCD. By the way, she says that the SCD is great for people who have diverticulitis too. Her book introduces the rationale behind the diet, how she developed it, and includes some recipes. I also used a cookbook from our library that follows that diet.
When I came upon the uMass website and their information about the IBD-AID, I was excited because it was more recent than the SED and I felt like and improvement upon it. The main difference is that the IBD a ID allows oats, while the SCD doesn’t allow any grains at all. Also, the IBD-AID allows unsweetened, plain yogurt, And I like that it has phases to follow, depending on how you’re doing right now. If you are having a flare right now, I would follow phase 1, which has you cook everything well and purée most things. It will really help to calm your system down quickly. Also, I lost a few pounds on the SCD, because it was hard for me to get enough calories at first, but when I switched to the IBD a ID and started to add some baked goods with oat flour, i’ve gotten back to my normal weight and stayed there.
Most surprising to me is that I was able to follow this diet for two weeks and then Northern Scottish highlands over the summer, which you know is very rural. I did go off diet and have a couple of scones with clotted cream because I felt it was worth the risk. Luckily, I suffered no ill effects.
I have described the diet to my gastroenterologist and while she did not know about it, she thought it sounded fine and nutritionally sound. She did not know of any nutritionist to use knew about it specifically, but I haven’t really tried very hard to find one. My guess is that if you want help from a professional, you should show them the website or print out the information, and they can probably help you make a nutritional plan based on it.
I’d be glad to talk to you more about what I tend to eat if you’d like to give me your email address. Also, I have a board on Pinterest that I have titled Happy Tummy Food, and it contains a lot of recipes that either follow this diet or it can be made to comply with it with a couple minor tweaks. My Pinterest Name is Alice McPherson Pierce, if you’d like to look me up on there!
Its your diet.You need to cut back on anything with yeast.
And sugar!!!
I also struggle with this and as time goes on it seems to get worse. I take two capefulls of day of miralax in juice or water. Also two weeks a month I’m on the antibiotic xifam.
I feel that I keep running after symptoms and try to treat or alter my behavior. Diffuse scleroderma is unforgiving. There are days you feel everything is involved. GI -SBIO. cummmmm dealing with. Routinely take 2 cap of colace a day and 3 caps of miralax. At times take Xifam antibiotic two weeks on two weeks off. I also have ILD-PF requiring nasal oxygen 4liters 24 x 7. If I’m doing things like laundry etc I up the O2 to 5. What happens is I become very pressured when oxygen drips. Yes it’s exhausating you can do it. You know your body the best. Good luck. Debbie
Boy can I relate to that statement. I keep running after this or that symptom. How long have you had ILD? I have been coughing last 6 plus months along with all of my Gi problems of with trouble swallowing, Sibo, slow motility and bowel issues as well. Any way I am having a high resolution CT tomorrow/ and will follow with ILD Pulmonologist.
My PFTs were good - so happy for that! But yes always working on one symptom or another!
Gut affected by Scleroderma
Question
how did your GI/gut symptoms start?
Skin Question 
