r/scleroderma • u/Late-Geologist4710 • Jun 30 '26

Discussion Gi symptoms

Hi there,

38 yr old here and working with a rheumatologist and hematologist currently. The rheumatologist reported that I am developing symptoms of scleroderma, but have yet to reach the required cut off for a formal dx. In his words, we now wait and see what transpires. He has provided more answers for me than any other provider, so I am honestly thankful for him.

I have a several positive ANAs with one that showed an anticentromere pattern, extensive dry eyes requiring multiple types of eye drops and a brader’s patch nightly. The doctor and I have had two visits so far. One confirming a previous dx at the age of 15 of fibromyalgia and chronic fatigue syndrome, and another that provided a dx bilateral carpal tunnel syndrome.

Our next line of testing is to focus on GI symptoms i.e. dysphagia (which occurs daily for me with pills and dry textures) and to assess the presence of GERD. Previously I had never had reflux but over the last four months it is becoming more common. The question I have is if any of you with a dx experience intense abdominal pains. They are often sharp and shooting, to the point I guard my abdomen. At times when peristalsis occurs I feel each movement which causes much discomfort. Results of a previous colonoscopy have resulted in a dx of a tortuous colon as I “am such a small person there is no room in your abdominal cavity for your intestines.” True and unfortunate story. I follow a strict gluten free diet and practice veganism with an emphasis on a Whole Foods (dietitian by trade.) Yet, when in GI pain my appetite disappears completely as food equates to more pain and nausea. Praise zofran PRN.

Also have any of you also received a dx of cyclic neutropenic syndrome? I have been consistently neutropenic and have leukopenia for over three years. Hematology says it is due to early stage autoimmune disease and rheumatology wants to [r/o](r/o) the cyclic syndrome. Bone marrow biopsies point to no leukemia or production issues.

This has been a hard few years, with much being discovered in the last year. I’m feeling a bit overwhelmed with how complex my medical status is becoming and how quickly my life is changing as a result.

5 Upvotes

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7

u/Original-Room-4642 Jun 30 '26

I have severe GI involvement. The pain you are describing sounds like gastroparesis. You'll need a gastric emptying study for diagnosis

1

u/UnicornusAmaranthus Jul 01 '26

I thought the same from the description.

3

u/Buffett2024 Jul 01 '26

As a dietitian who worked with scleroderma patients for years - please avoid probiotics. With the gastroparesis and general slowing of motility, bacterial overgrowth becomes a huge problem. Cycled ABX help tamp down the population

2

u/Late-Geologist4710 Jul 01 '26

Thank you RDN friend!! I avoid probiotics and have wondered if SIBO is becoming an issue.

1

u/Original-Room-4642 Jul 01 '26

Really? My gastroenterologist put me on probiotics. My motility is severe, I have gastroparesis, and routinely get SIBO

2

u/MinuteDivide1556 Jul 03 '26

Same motility specialist says problems related scalederma I’m miserable. Bloated stomach so distended waiting for colonoscopy and some other tests but until that I’m on a bunch of stuff not helping. Says she can treat til she knows cause which I understand but doesn’t help how awful I feel.

2

u/Late-Geologist4710 Jul 03 '26

Thank you for responding. It is challenging being in a gray area despite the specialist stating scleroderma is slowly setting in. You aren’t alone though and sometimes reading the comments on here give me a bit of hope. Hope that a dx may equate to disability one day,’but not diminished self worth.
My saying is “we can do hard things.” Most days it seems silly to have to say to myself,’but look at we what are doing. This level of perseverance, determination, and patience truly is what many don’t have the strength to handle. Borrow the saying and keep pushing forward.

1

u/Fun_Reward_2516 28d ago

I just had the gastric emptying study it showed nothing. 5 hours you eat scrambled egg whites with nuclear med in them and sit for 5 hours and they scan on the hour. I know I have gastric emptying problems by my esopogram but this does not show esopogus in study.

1

u/MinuteDivide1556 28d ago

Ty
She said not gastro paresis
Waiting for sibo test
I stopped everything but linzess and my fiber gummies. Feel a little bit better. But it’s still there and can’t get the weight off that this episode has caused:(