Posted 14 April 2004 - 05:08 PM
Posted 14 April 2004 - 05:22 PM
The bone aches and fatigue/weakness are probably the hardest things for me to deal with right now (I work 40 hours a week and some days are TOUGH) - I can tolerate the getting physically sick to my stomach part fairly well by now, but I haven't yet mastered the body aching and dragging feeling part
Good luck with your health and happy posting!
Posted 15 April 2004 - 05:13 AM
I got my endoscopy results back, and they are positive for celiac disease. The doc is sending me stuff in the mail and then I am supposed to see him May 5 to discuss everything. Have you gotten your endoscopy results back? I have been wondering about your results since are symptoms were so similar. My abdominal pain is back. It seems I had a short two week reprieve from it. I havn't gone gluten free yet--I am preparing to...my daughters birthday is in less than two weeks, I want regular cake one last time! Last night I had stouffers lasangna, and pretty much immediately afterwards I was really bloated and in pain--it was the first time I ever linked the pain to eating. I usually just have it all the time on and off. Anyway, now I guess I need to talk to our pediatrician about getting the kids tested. Also, I guess I need to get some bloodwork done to see what all deficiencies I might have at this point, and a bone scan--I have heard this is a good idea. Where are you in this process? Have you had a bone scan? It's wierd, because I have all these symptoms of celiac disease, and now a diagnosis of celiac disease, but it is still hard to accept in a way that celiac disease could have been causing so many problems for so long and no body knew....I guess that is normal, huh?
Posted 15 April 2004 - 07:19 AM
I have NOT received my results yet - my doctor called me on a Thursday afternoon last time - so I'm hopng that he'll call later today - I was wondering if I should call the office, but then I didn't want to talk to his secretary - I'd rather speak to him directly!
I'll post my results the minute I hear from him, though - I almost think it's going to be negative for Celiac based on the endoscopy biopsies alone - I think my stomach looked pretty normal to him...I may have to get that enterolab test?
I have NOT ever had a bone scan - Do they take the bone scans to check bone density? Like for degeneration? Hmmm...
I had spaghetti and bread last night and didn't get sick - If I had Celiac, wouldn't I be doubled over almost immediatley?? This morning I felt sick, but last night I was fine - I'm stumped
Keep me posted on how things are going for you - and also on the fate of your kids...Good luck!
Posted 20 April 2004 - 09:28 AM
Now I don't know what to do - I have a follow up appt. scheduled for the end of May - should I ask for the enterolab test at that point?? I don't know what questions to ask my doctor at this point - I'm really depressed.
How many other people had negative endoscopy results??? Help - I need some advice
Posted 20 April 2004 - 06:32 PM
I am sorry you didn't find answers yet. I would ask you GI for a report of the endoscopy. Does it just say "negative" or what? I know that several here have had negative endoscopies, but have gone on the diet, and bam! Felt better. Maybe you should try the diet for a few months and see. I know it is a big commitment, and all, but it may be worth it. I have also wondered maybe you should try to get the gene test. I know it is expensive, but if you don't have the gene for celiac, then you for SURE know you don't have it. I am thinking I may want to do this for my kids, because it there labs are normal, before putting them through and endoscopy I want to know is it even possible for them to have it? If they don't have the gene for it than that will be one last thing I won't have to worry about for them in their life-time. If they have the gene then I probably would have to do an endoscopy. Anyway, having a diagnosis is not the end all with this thing. For me, it has really opened up a can of worms. Now I have to get a bone scan, other tests for deficiencies, and even then--the doc warned me that celiac disease may not explain ALL my symptoms--so that is really comforting, eh?
Keep searching for answers, and follow your instincts. I wish I would have followed mine earlier, I would have searched more aggressively for the answer to my own health issues.....Ah, hindsite is 20/20.
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