Nausea, bloating, indigestion, heartburn, cramps, diarrhoea, constipation, loss of appetite, etc. These are but a few of the issues that patients suffering from Amyloidosis face when their gastrointestinal system become compromised. There is really no easy answer on how to prevent or manage the long list of symptoms but one thing clear is that there are no present cure to it. Medical researchers who are knowledgeable in the field of ATTR Amyloidosis themselves are unclear on the causes of gastrointestinal disturbances and admit that this area is still poorly understood and more needs to be done to find a solution for patients.
In the meantime, sufferers must learn to manage and try to reduce the symptoms. Unfortunately there are no fixes to the problem. One of the key step sufferers can however take is to understand and be educated on what each manifestation means, how the compromised gut promotes it and what measures can be taken to handle it so as to prevent secondary dysfunction stemming from not eating well.
From our own personal experience on this topic, we have learnt that therapeutic medication prescribed by doctors can alleviate the problems but as with any drugs, there are side effects to each. Hand in hand however, patients should also consume foods that do not contribute to the issue but instead, provide the needed calories without the distress.
In their recent patient support platform, Amyloidosis Research Consortium (ARC) provided a very informative look at managing GI issues for amyloidosis patients. We highly recommend that you access this free online video featuring Dr. John Clarke from Stanford University. One of the subject he highlighted was Fodmap and how keeping a low Fodmap diet for patients can help. There are quite a few GI symptoms in TTR amyloidosis sufferers that are similar to Irritable Bowel Symptoms (IBS) condition and by keeping a check on the type of food eaten while being mindful of what you consume, hopefully these steps will help.
Monash University has created a FODMAP DIET app which will provide you a list of foods that you can and shouldn’t take while keeping track of your progress. The app is highly useful and with amyloidosis sufferers, prevention is always better then going into the hospital.
To have a good understanding of what Fodmap is, Monash University have also produced a video that explains the subject matter. Please watch it and with the insights we have provided, we sincerely hope that you will be happier when eating.