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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
May 8
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Answer Summary

Members connected over the challenging and frustrating belly bloat caused by amyloidosis, with many sharing that their bloat runs vertically... Read more

Members connected over the challenging and frustrating belly bloat caused by amyloidosis, with many sharing that their bloat runs vertically from the sternum to the groin and makes finding fitting clothes nearly impossible. Several members mentioned trying remedies like Lomotil, Gas-X, Beano, and low-fiber diets, though most found little relief, while one member noted that diuretics and gentle exercise helped manage fluid buildup linked to heart weakness. A recurring theme was emotional solidarity, as many felt relieved to know they were not alone in this experience.

A MyAmyloidosisTeam Member
May 12
A MyAmyloidosisTeam Member

In my case the bloated belly, I am told, is mostly fluid. As my heart is weak, fluid collects in legs and round waist. The solution is drink less and wee more - for this reason I am on diuretics and exercise as much as I can. BUT must not overexert myself. Good luck.

May 26
A MyAmyloidosisTeam Member

I wear pants that are a size too big just to remain comfortable. I’m trying something new now. I did away with extra sugar, decaf coffee and dairy. I’ll add a little back one by one and see which one might be the culprit. 🤷🏻‍♀️

May 12
A MyAmyloidosisTeam Member

I take lomotil, gas x, beano. It’s all very frustrating. I also eat a very low fiber diet because of the constant diarrhea.

May 9
A MyAmyloidosisTeam Member

Thank you all for your replies.

June 2

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