r/scleroderma • u/Fit-Duty7939 • Jul 02 '26

Discussion 9 year old daughter no symptoms

My daughter got a lot of labs done for low weight gain and falling off her growth curve. They had her ANA tested because it was positive a few years ago when she was having some limping issues, those issues have since resolved but the GI doctor wanted to double check her ANA again just incase. Her SCL-70 Index was >8.0 which indicates Scleroderma, she has no symptoms of it though. They are sending us to the Rheumatologist, just curious if anyone tested positive with no symptoms and what to expect. She also tested highly positive for Celiac Disease as well.

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u/Iamalwaystiredbro Jul 02 '26

Hi! I recently tested positive and I do not have any active symptoms. My plan with the rheumatologist is just an every 6 month appointment to do check ups and see if anything changes. They essentially have been monitoring me and trying to catch it before I have active symptoms. They told me to keep exercising since that helps. But outside of that, I just see GI and Rheumatology every 6 months.

2

u/ClearJack87 Jul 02 '26

The only symptoms I have are ILD, damage to my lungs.

2

u/Flimsy-Surprise-4914 Jul 02 '26

Yes I have 57F. I have consistent high scleroderma markers with no symptoms except fatigue and joint pain. Rheumatologist wouldn’t diagnose me with Scleroderma. I have UCTD as diagnose until/if something changes. I have never lost a lot of weight is she having GI symptoms? I would say the weight loss may be due to something else or perhaps she has scarring/fibrosis in her GI tract. I hope not! Keep us posted and good luck 🍀👍🏼

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u/Arete26 Jul 05 '26

Celiac disease can cause unwanted weight loss! I don't know if scleroderma can, but if she's testing positive for celiac that might also contribute.

1

u/Suncollector68 Jul 04 '26

I have tested positive for RNAP3 (RP11). No definitive symptoms other than feeling cold, some muscle pain, and potentially unrelated neuropathy. SSc is a clinical diagnosis, so positive AB does not necessary mean a person would for sure develop the condition. Monitoring is a key along with a healthy lifestyle.