Terrylynnemj

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About Terrylynnemj

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  1. Terrylynnemj

    Later Diagnosis

    I’m 62 and have just now been tested for Celiac. My Titer was negative, I have zero IGa and too much IGg (16) which is an indicator of intolerance at the very least and may indicate the need for another endoscopy. He also tested for EPI (exocrine pancreatic insufficiency) which was negative. I just had a colonoscopy/endoscopy last year as a part of being diagnosed w/ Gastroparesis. I also have (among other things which I’m not sure are as relevant) - T2 Diabetes, Hashimotos Thyroiditis (late 30’s) Chronic Kidney Stones (since age 40), Osteoporosis (way before Menopause and not well controlled), and Gallbladder disease.(was removed) I’m discovering that all those I listed may be related in some way, and related to Celiac. I haven’t seen the gastro doc for followup since the testing (obtained results from lab) so I’m not sure what he’s going to recommend. Here’s where it gets scary... my daughter has many of the same things. She was just diagnosed with EDS (Ehlers-Danlos Syndrome) at 32. She was diagnosed w/Glucose intolerance at 15, had her Gallbladder removed at 20, PCOS at 22, and Gluten intolerance at 30 (no testing, just her gastro’s recommendation). She’s been diagnosed w/Gastroparesis, POTS, MAST Cell Activation Disorder, Peripheral Neuropathy, (lost use of her bladder and has a neuro stimulator) - all in the last year. Too much coincidence for me. This has to be all related. I keep reading more and more studies linking all these things (like EDS and Celiac) together. My daughters geneticist is blown away by the multiple overlapping and co-morbid conditions we have and tells us it’s not uncommon. She also says research is expanding. Sadly, the specialist docs seem baffled and can’t even begin to address our issues, and only help to manage the symptoms - sometimes. And every “Disease/Disorder” has a “diet” or protocol, and they are all at odds with each other - very frustrating. I guess the moral of this story is to let others know that there’s a lot more to all this than meets the eye. Don’t let anyone tell you you’re fine if you have what seem to be strange unrelated symptoms. You’re not crazy. Keep fighting for understanding and knowledge. Be an advocate for yourself, you’re loved ones, for us all.