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Confused about Fiber


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#1 willow

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Posted 05 January 2010 - 06:54 PM

I have been reading the medical articles and it seems like when you have the dysmotility issue less fiber might be better? Or no?

I have always eaten a high fiber diet and it just doesn't seem to be agreeing with me anymore, also anything hard to digest like fats and proteins I am having a hard time with, I have no appetite for them. After my last bout in the E.R. I went to a liquid diet and then I added some baby food to try and get a little protein and so on, but even on that I still am having a hard time.

I saw a new doctor today (in the process of trying to find a primary care doctor in my new city) and she was adamant I need to get a lot of fiber and fat in my diet to "slow my digestion down." I am scared to try this because I'm really sick of the E.R. and throwing up.

Is it just trial and error to see which diet works best? Or is there some kind of method? There seems like disagreement even in different articles I am reading.

Secondly, how do you find a gastroenterologist who is familiar with scleroderma?? I am finding that even now that I have a diagnosis, providers still have no idea what is wrong with me or how to treat me. This is kind of disappointing.

#2 Shelley Ensz

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Posted 05 January 2010 - 07:13 PM

Hi Willow,

Everyone is different, but very generally speaking, they recommend a regular, well-balanced diet for systemic sclerosis (scleroderma). Going overboard on fiber can create issues if there are dysmotility issues; having too much liquids can literally cause diarrhea. And so on and so forth.

So, until you round up a scleroderma expert to consult, or have more tests done to address your own particular issues, try not to go overboard in any single direction. Basically, try to aim for balance in every meal; not over-indulging in fluids, fat, protein, or fiber...just a reasonable bit of each at every meal. We have more tips on this on our Diet and Scleroderma page and also on our Gluten Sensitivity page.

I've tried nearly everything, myself, over the years. I find that I function best with regular meals, not too much at any given meal, not skipping meals, with balanced wholesome foods. But my g.i. issues settled down very substantially following a gluten-free and casein-free diet (after medical testing that showed this is an issue for me.)

Also, I found that I have bad g.i. reactions to some medications, including some pain relievers. So if you are on any new meds or at higher doses of them, even over the counter ones, take a long hard look at them, as well. They might be taking a delicate situation and making it drastically worse.
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.

#3 willow

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Posted 05 January 2010 - 07:34 PM

Hi Shelley, thank you! I do have to take pain meds and they do definitely cause issues, but I need them, so what to do? The doctor had me taking a senna laxative with them but that was not helping so switched me to the Polyethylene Glycol stuff. I am in a quandary about this, if I don't take anything for pain I am ready to go out of my mind. I am really sensitive to medications and have tried so many and not been able to take them.

By the way, does anyone know, is simethicone ok for sclero guts?

I had some oatmeal for dinner and it was so good! but now I can feel my stomach bloating up.

#4 Jeannie McClelland

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Posted 06 January 2010 - 05:44 AM

Hi Willow,

The way I found my scleroderma-familiar gastroenterologist was through the scleroderma center of excellence where I am followed. I know you are in a new city and in the process of looking for a new primary care physician, but it never hurts to call your rheumatologist and ask if he has any recommendations. You could also contact any scleroderma expert's practice and see if they could suggest someone to see.
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#5 willow

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Posted 06 January 2010 - 08:13 PM

Thank you, Jeannie. I was sad to see no scleroderma experts listed for the state of Washington. I'm surprised there are none in all of Seattle, you would think there would be someone. The front desk at my rheumatologist's office did not know of someone in particular they recommend, either, which I have to say surprises me.

#6 Amanda Thorpe

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Posted 08 January 2010 - 10:44 AM

Hello Willow

I found information about simethicone and although it does not specifically mention scleroderma it does say to consult with your doctor before use if you are on other medication. Have a read of the article MayoClinic.com
and talk to your doctor.

Take care.
Amanda Thorpe
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#7 Shelley Ensz

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Posted 08 January 2010 - 05:15 PM

Hi Willow,

We actually do have several scleroderma experts in Seattle, one of them should be on the SCTC listing shortly. You can PM me for the info.
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.