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Scleroderma and Diet

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#1 summer


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Posted 14 September 2009 - 11:22 PM

It has been nearly 3 years now since I have been diagnosed with Limited/Crest
Scleroderma. I have no skin hardening as yet, but have lots of things going
on internally.I also have been having slow motility/bowel problems now
for at least 12 months. I am in the care of a Gastroenterologist, which I
see frequently. There is not a lot of things that can help me, I have tried
Motilium, but it has not helped.

Recently I have been experimenting with my diet, to see if anything can help my slow
motility problems. I have tried, low fat, high fibre, no fibre, eating less sugars, etc.
Nothing has worked, so far. I know there is a lot of contraversy
about this diet, but decided that I needed to lose weight, and I needed to see whether
having a high fat / low carb diet would help ease my symptoms of slow motility.

I am pleased to say, that I have been going to the toilet to open my bowels, nearly
every day. There is no pain, no cramps, no nausea, no vomiting. This has really shocked me,
as I thought that a high fat diet would sit in my stomach a lot longer.

I have an appointment to see my Gastro doctor in two weeks time, so I will be interested
to see what he has to say about it.

Has anyone tried this diet, that has slow motility/problems?, has it helped?.
Is there another diet that has worked for you and helped your motility/bowel problems.

Thanking you all in advance.


#2 janey


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Posted 15 September 2009 - 04:47 AM

I'm so glad that you have found a diet that works for you! I'm still struggling to find the right fit. I don't have the same issues that you have, but like you, it's a matter of testing things out and finding out what works best for all your symptoms. (I'm currently running an experiment to see if diet affects my O2 levels.) I do find the high fat part of your diet interesting. I would think a lot of fat would give you the runs. :( For me, a high fat dinner kicks up my reflux, so I try to avoid it. Just one more example as how this disease affects us all differently and it's a matter of experimentation to find out what works best.

Congratulation on coming up with a successful solution. I hope it continues to work for you.

Big Hugs,
Janey Willis
ISN Support Specialist
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(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 stargazer12



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Posted 15 September 2009 - 09:42 AM

Summer, Congratulations on your success. I have been on a gluten-free, non-dairy diet for almost a month. BMs are much more frequent and easier, It seems I have more energy, too.

At first it seemed impossible to avoid so much "ordinary" food, but the improvement is encouraging.


#4 Shelley Ensz

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Posted 15 September 2009 - 10:24 AM

Stargazer, I have to second your motion for the gluten and dairy free diet. It is certainly not easy to achieve, but has been oh-so-worth-it for me, particularly for gastrointestinal issues, even including the heartburn.

Recently they have been uncovering some sort of relationship between gluten and scleroderma. See our page on Celiac Disease and Gluten Sensitivity for more information.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 betty32506


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Posted 15 September 2009 - 12:52 PM

I'm glad you found something that works.
I too was having gastric problems and experimenting with diet I found that high fat high carb was what I could handle best. Protein, especially beef is very hard on my system. Then I had a gastric emptying test and diagnosed with gastroparesis. That was the diet they gave me. I am also diabetic which is almost the opposite. I decided that if I couldn't eat I wouldn't have to worry about diabetes for long. Actually if you can't eat nothing else matters. I have lost weight to the point if I loose anymore I will be too underweight. I don't know if this is because of the diet or in spite of it. Cholesterol meds are keeping that in check. Thankfully I am able to keep blood glucose in a good range.

#6 Sheryl


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Posted 15 September 2009 - 02:11 PM

Summer, I find that if I stay away from fried foods and some types of seafoods I do quite well. I have ongoing issues throughout the year. I just do my best to write down what I have eaten in a 24 hour peroid prior to and during times of distress. That way when I talk to my physician he can prescribe something if needed or run the appropiate tests to see what is going on.
Strength and Warmth,

Sheryl Doom
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#7 Sweet


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Posted 15 September 2009 - 04:25 PM

Hi Summer,

I'm so glad you found something that works for you. I think I know what diet you are referring to. I used it off and on for a couple of years before I was diagnosed with CREST. It took a lot of weight off of me, but I was constipated ALL THE TIME. So, I have to say I'm surprised it is working for you.

I'm having terrible problems with dysmotility right now and it's on my "list" to talk with my rheumatologist about next week.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)