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Gastro problems

searcher24 profile image
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Hello! I am not sure if I am posting in the right forum, but I am looking for insight on experiences with gastroparesis or other gastro problems related to scleroderma or mixed connective tissue disease. I was diagnosed with mixed connective tissue disease at age 16 but developed symptoms at age 10--just took a lot of years to pinpoint the problem. I show features of scleroderma, rheumatoid arthritis, dermatomyositis, and Sjogren's. I am 24 now, and throughout this time, I have always struggled with some degree of stomach issues--nausea and stomach cramping mostly. However, about almost two years ago, I began to lose my appetite, my stomach would become very bloated after eating, I feel nauseous most of the time--comparable to motion sickness--and I get abdominal cramping across the top of my abdomen. I also suffer from chronic constipation and reflux which is becoming worse and causing chest pain. I have had an endoscopy done and colonoscopy which were normal, and my doctor is suspecting a motility issue and wants to do a smart pill test and esophageal manometry to check my motility. My question is,Can esophageal motility issues cause these symptoms? If it is stomach motility, can gastroparesis be mild? I do not vomit with the exception of a couple of times when nausea was extreme, but I never feel like eating and sometimes avoid food because I know it will make me so sick. Sometimes if I drink too much water it also causes me symptoms. The only time my stomach feels fine is when I don't eat. I force myself to eat because I know I have to sustain myself, but I have begun to just drink Kate Farms shakes because it is easier on my stomach. Right now, I am just managing by taking Bentyl when I get the severe cramping and taking Zofran for the nausea. For those with gastroparesis, before treatment, were your symptoms constant, or did you go through times when they weren't as bad and symptoms would flare up? I use to go through times when I would just flare up and have problems, but in the last 6 months, the symptoms have begun to be more constant. I would appreciate any information on anyone's experience with gastroparesis and stomach issues related to scleroderma or mixed connective tissue disease.

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Hi. My son was diagnosed with Mixed Connective Tissue Disease at age 10. He is now 16. He also had stomach issues very similar to what you are describing - bloating, belching, loss of appetite. Symptoms were very intermittent and when ok he could eat a steak no problem but when they were bad he couldn’t get a bowl of soup down. After loads of investigation which were all negative, nobody could come up with an explanation for the stomach issues so we decided to look at his diet. He now follows an autoimmune protocol diet. His overall health has improved so much on this diet that he has come off all medication for the MCTD. And all stomach issues resolved. He also started to gain weight with the new diet. He’s been following this diet since age 12 - it’s been amazing and has totally transformed his quality of life. Xx

I'm so sorry. Yes those symptoms can happen with motility issues. I have a clear endo and colonoscopy but have motility issues. I take Omepriziole daily and that keeps the heartburn at bay. I also am gluten and dairy free and that certainly helps also. I have been a vegetarian for 30 years. I am 46. This year I started working with a naturopath. She tested me for everything bacteria and allergy wise and nutrient deficiencies. I now take a bunch of supplements to get my nutrient levels up as well as thing like probiotics, L- glutamine, and digestive enzymes to heal my stomach and lesson discomfort and increased nutrient absorption.

Eat slow and small meals especially carbs and take small sips of water between bites to help with motility and maybe that will help with the nausea. good luck.

MissusTee profile image
MissusTee

Hi,

I have scleroderma, sjogrens, PBC and hypothyroidism. I've had an awful time with gastric issues, the same symptoms as you with a lot of weight loss. After getting malnourished it was discovered that I had SIBO. I'll have to take antibiotics on and off for the rest of my life. Now I still have some problems, and I do think that I have mild gastroparesis. I was starting to vomit a lot, but I haven't for a while, it tends to come in cycles. SIBO and gastroparesis often go together so it might be worth you having a breath test done as a starting point.

Ncoff profile image
Ncoff

I have scleroderma and raynauds I suffer with gastro issues such as reflux and acid malabsorption I take lanzaporole and peptic acid and Aldi take sachets to help with upset tum eat little and often and not Late at night. My stomach is always bloated and crampy and feel sick I take anti sickness tablets prescribed which really help I lost loads of weight before diagnosed. It settles and often returns

JacqueD profile image
JacqueD

I have been diagnosed with mixed connective tissue disease since I was 18 years old, I am now 36 and have developed acid reflux and heartburn for the pastyears. I almost can't sleep because of my heartburn. I have been taking Serrazyme Ultra from WholeFamilyProducts 30 minutes before meal and it works for me. Just make sure also to avoid sour foods.

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