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Member Since 21 Jun 2011
Offline Last Active May 11 2015 10:49 PM

Posts I've Made

In Topic: Gi Appt Today-How To Tell Dr News

27 September 2011 - 02:03 AM

Omg, I'm keeping my GI doc. Will tell u mote after I rest.

In Topic: Gi Appt Today-How To Tell Dr News

26 September 2011 - 02:12 PM

This is what I feared when I got old. It happened when was at the best time in my life. I think gluten is likely at the root. So my GI didbt see me. I hung out resting in the main lobby of Hosp cuz I don't wanna go home.. Ok, but my cardiologist just called & said go rest. I'll tell ya abt my GI doc later. I think she's getting flushed down the toilet.

In Topic: Gi Appt Today-How To Tell Dr News

26 September 2011 - 01:41 PM

Wrote the story but got booted.. Too tired now. Didn't see the doc. Unbelievable! Goes to show ya worrying is a waste of energy! Now I'm just tired of dealing with docs. I have to say two on my team are awesome human beings. The ppl who wirk at this hospital (my personal headquarters) are so kind. I can't walk down a hallway without 3 ppl from wherever, radiology, phlebotomy, admin, stopping to offer me assistance. Darn I thought I lookedgood today! The days I look like I crawled outta bed and in sweats are tge days I get hit on! I guess the unkempt look works fir me & zero make up. Maybe younger women don't wear make up or comb hair or shower. someone pls tell me cuz im so isolated I don't know. It was a very frustrating day & goofy moods don't last on no sleep. Ok im not bipolar! Actually, just pretty consistent even being abused by my family right now. I'm on this huge campaign abt disability abuse & neglect & made you tube videos on it. Ppl with ny nervous system problem all know each other & when we had 100 videos to spread awareness like. A year ago it then grew exponentially! Celiac ppl aren't there yet, though gluten is much more known than when I was a baby dxd with celiac. Well turns out a huge wacky percent of ppl with my illness also have gluten issues. So I created an online group for dysautonomia patients with gluten problems. In just 2 weeks we had 50 members (good for rare illness subgroup!). We promote this celiac.com group as an amazing place for info, support, anything u need! Sp sky, yep I am way devoted to learning & supporting & bringing ppl together cuz I think ppl with life long or many years with gluten issues off the diet (and I want enzymes too), develop serious multisystem health problems. I don't think I can ever be convinced to eat gluten again. Gluten poisoning ruined my life but I hope I have another chance to really do something more important-help patients. So many are emotionally abused & neglected by those thry thought would help them, docs, family, healthcare workers (ny aide stole some very valuable items that were sentimental..my next one spilled her drink on my netbook..so what if tgey are bonded..they never will reappear except when police catch them..as they did my first aide). Th

In Topic: Gi Appt Today-How To Tell Dr News

26 September 2011 - 07:51 AM

Need to ask for emails to inform me of replies

In Topic: Gi Appt Today-How To Tell Dr News

26 September 2011 - 07:48 AM

Contd an MD in complimentary medicine did the DNA tests. My neuro believes it. My Endo believes it (and SHOUKD have picked it up with all my bone & Endo issues) & even mayo asked me if I ever was told abt celiac & o just rolled my I eyes. "I dobt have celiac!!!" I said for the hundredth time! Well, seems I do. And oh, btw, I have nails for first time. Too bad celiac disease actually has put me in the fatal zone. My first dx of celiac disease caused years of destruction. I'm afraid to tell my GI doc. Some think complimentary Md is a quack & gi sure screwed up. Plus I'm DQ 2.2..not the most common, but yet everyone else agrees I must do the diet. Sure diet is a drag but worth it obviously even showing in my blood for things we coukd never fix. Bone density also big clue..since my 20s! I think she will not believe the DNA proves anything. If she doesbt, she's fired. Now I have a half hour to sleep for the night & somehow go. Please send words of empowerment. I have chronic doctor fatigue syndrome! Thx, friends. Do the diet even if ur not sure. Don't cheat. Just do it if u think u have gluten issues & lots of clinical signs. I don't think the stats on determining accuracy of tests are correctly done. I'm a statistician & I'll explain why after I survive today. Hope to hear from you. I'll keepyself logged in on my phone. Xo

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