Celiac and my family
I am at my wits end and absolutely desperate. My 15 yr old daughter is the one who has celiac in our family and was diagnosed only a year ago. With numerous errors and “rookie” mistakes, we have finally gotten pretty good at always checking labels, having a designated GF space food prep space, utensils, cookware, condiments, etc. at home and emphasizing her condition and sever reaction when eating out. Even after all of this, numerous blood tests, colonoscopy, endoscopy, MRI, CT Scans, etc. she STILL suffers from excruciating pain on a daily basis. The pain is in her entire abdomen (upper, lower and both sides), her chest, and her back. She’s lost tons of weight (which I know is to be expected once you’ve gone Gluten Free), but now she’s also weak. As of the past month, she can barely keep anything down because she’s ALWAYS nauseous and has even had to have pain/nausea meds in IV twice. She’s got no strength and her dr has actually put in an order for a wheelchair. She’s so frail that even a gentle hug hurts her, I feel if I hold her hand, it might break. I feel as if I am one step away from a mental breakdown watching my baby suffer like this. My husband tries his best to help, but she depends on me more than anyone. I know that if I am battling the worry, stress and heartbreak of watching her battle this, that it must be a million times harder for her to actually be experiencing it.
Please, please, please, does anyone have any suggestions? Any advice? I feel as if I am watching my daughter wither away before my eyes and I am powerless to stop it.