However. The GI stuff is really concerning. IBS can be bad, and it can be difficult to manage, but the one thing that seperates it from other true GI disease like Crohns', ulcerative colitis, and Celiac is there is no autoimmune response. I would definitely make her get a different GI Dr. start from there. She also needs comprehensive labs from everything from basic chemistries to a full autoimmune workup, with antibody studies, and ANA, CRP, C3,C4 compliments, and so forth. If she had just the beginnings of Crohns when she had her colonoscopy biopsies are notorious for being negative, especially if they were done of the Terminal Ileum, the last section of small bowel that connects to the colon. If the Dr was unable to get in there, and it can be tricky, you may not have answers.
The first real test to see if it is autoimmune in nature without all of that is to give her a steroid burst/taper, and see if she improves and if she does then you most likely are dealing with something like that. If she is continuing to loose weight, and is highly stressed then she needs meds to help calm her nerves as well. She should be focusing on a low residue high protein diet as well. Less work for her body to break down, and give her what she needs.
I'm so sorry for her. I wish I had some more wisdom instead of a suggestion for the easy, small thing.
Maybe her PCP could be persuaded to refer her to a gastroenterologist?
No one should be made to feel bad for being sick. Thanks for advocating for her.
Again, not trying to equate your sis with a canine, but her story sounds eerily similar. If she was treated for the Giardia, make sure they did a follow up test to confirm the giardia was eradicated. Don't know the human equivalent, but my dog was finally diagnosed using the ELISA test that tests for enzymes present with Giardia, rather than looking for the organisms in a stool sample. Supposed to be a more accurate test.
I'm considering all of this and taking notes to ask the doctor this afternoon. It makes sense that it is a weird autoimmune thing that started with the initial infection. A few years ago, after a lifetime of NO allergies, she developed allergies to all hair products, including shampoos and her beloved hair dye/mousse/fluffy stuff. She's always been fancier than I and I don't really know what she was doing for beauty but she always looks great!
Getting old is not for the faint of heart.
There's always failure. And there's always disappointment. And there's always loss.
But the secret is learning from the loss, and realizing that none of those holes are vacuums.
- Michael J. Fox