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erika

Gastro - food issues

7 posts in this topic

Dear all,

 

Allthough I am still not not on immunosuppressant (my rheumatologist advised not to take it yet) I have been reasonably well regarding sclero recently. My joints and muscles are better, skin is not progressing - it is even better, mouth shrinkage has reversed (the skin on mouth has peeled !).

 

However, my food intolerance (or whatever this is) has worsened during the last 3 weeks. I have problems when I eat any of carbohydrates. Any flour (even without gluten) , pasta, rice and even banana makes my mouth extremely dry with white tongue and my stomach cramping and making noise. Also I feel sick and weak. This lasts 2 days and then stops if I eat only fruit, vegetables, meat or fish. There is no reflux, I feel like I have eaten a lot of chalk.

Any experiences? Is this sclero or what?

 

All the best

 

Erika

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Hello Erika

 

We have a section about how some foods can make scleroderma symptoms better or worse. Make sure you consult your doctor about this problem though because as the section says Don't go on any diets that eliminate food groups, and especially avoid high-protein diets because they are very hard on the kidneys.

 

Keep us informed and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Erika,

 

Since you have had a change in symptoms, this means it is time to see the doctor again. Keep in mind that I have no medical training at all, and that I may be wrong (I often am!). It's possible you might be experiencing symptoms of gastritis or thrush, and so forth. Sometimes if we have a mild case, these things might clear up on their own with a little change in eating habits or removal of a troublesome medication. Also keep in mind that we can have reflux and be unaware of it, as it does not always cause that severe, throat-throttling pain that we tend to associate with it; it can also silently erode.

 

Anyway, this is not a normal 'symptom' of scleroderma but gastritis and heartburn are usual with scleroderma and thrush can creep in due to the medications we are frequently on (especially, antibiotics).

 

Will you let us know what you find out?


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.

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Hi Erika

 

I'm very pleased to hear that your joints, muscles and skin have improved. :)

 

I would agree with Shelley and Amanda that a visit to your doctor is probably in order regarding your stomach problems. Although I don't like to be constantly pestering my long suffering doctor, I always try and see her if I have symptoms that last longer than I feel they should, if only for reassurance and to set my mind at rest.

 

Do let us know how you get on.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Erika,

Regarding your food issues, please take yourself off to see your doctor, but once you have, you might want to consider a low starch diet.

 

Our daughter has had all sorts of stomach issues in her adult life and eventually after seeing a doctor and being told that there was nothing specific wrong, she accepted a book which I had been given for her which advocates a low starch regime. Not necessarily no carbs. but careful consideration of what foods have a high starch content and plenty of fruit, veges, meat and fish. She is doing much better now and has loads of energy compared with before.

 

I am having a bad memory day today and I can't remember the exact name of the book but I did pass it on to Jeannie and she may be able to let you know about it.

 

Warm hugs, and hoping you get some answers soon.

 

Judyt

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Hi Erika,

 

I bought the book and will be happy to let you know the title if you'll PM me. I've found that reducing my starches has certainly helped reduce many of the irritable bowel symptoms (in conjunction with some medication). Not all starches seem to affect me the same way, so I'm trying to pinpoint which ones are the culprits and cut those out.

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Dear Judyt, Jeannie, Joelf, Amanda and Shelley,

 

I knew that I will find some similar experiences here and also that the answer will be quick and usefull. I am totally interested to find this low starch book and have sent Jeannie PM with a request to send it to me. I am under a frequent doctors supervision regarding food intolerance and I will let you know about doctors advice.

 

Thanks a lot.

 

Hugs.

 

Erika

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