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Gi Appt Today-How To Tell Dr News

Neshema1

By Neshema1
in Doctors

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Neshema1 Newbie
Neshema1
Posted

Ok. Up all night. Have dreaded gi appt in few hrs. Like my dr but gotta tell her another dr did my DNA tests & pos for celiac. I was dxd shortly after a year old. gluten-free 4 years. Then found pancreatic digestive enzyme (trypsin) deficiency. Now know that can be result of celiac disease. I have every symptom imaginable and even neuro damage (and Im a prof), RA, osteoporosis premenopausal, anemia, untraceable D, hyparathyroidism,, all kinds of deficiencies, u name it..list too long. Well back gluten-free a few months. Still have neuro & arthritis but I was abt to be sent back to hematology when my blood tests came back great. My protein is up (even though I've lost weight cuz my albumin up meaning less extracellular fluid), d beautiful, parathyroid a bit high but way better, calcium better, anemia still a probl.em but MUCH improved. I'm finally absorbing nutients & supplements. And fir two days last week my (not to be gross) bm were normal! Never before in my life! I have not deviated at all from diet & a few meds had to be changed from generic tO brand. So, how was I poisoned all these years & every doc but GI thought I had celiac? Apparently the arthritis drugs caused false negative. My health has been ruined. My stellarcareer ruined. Even my heart has been severely messed up. I'm so mad! I'm on disability with every system destroyed. My neuro issue is related to Parkinson's. Can happen from celiac disease! an Md who does

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Neshema1 Newbie
Neshema1
Posted
  • Author

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

Neshema1 Newbie
Neshema1
Posted
  • Author

Need to ask for emails to inform me of replies

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I guess the best advice I can give you is to be truthful with your GI. If he/she doesn't agree with the other Docs you've seen about your DX..maybe it's time to get a different one?

In any case..you don't need a GI to tell you to be gluten-free. If the gluten-free diet works to ease your symptoms stick with it. AND don't do "gluten light". Be truly gluten-free.

Good luck..don't be afraid.

mushroom Proficient
mushroom
Posted

Hello, and welcome to the forum.

Never be afraid of your doctor!!! They work for you and you are the boss!!! If anything, you should be angry at your GI (and all the other doctors) who have placed you where you now find yourself :ph34r: That being said, many of us have had to kiss a lot of medical frogs before we find our diagnostic prince. And it doesn't matter a hoot what kind of medicine they practice as long as they are able to recognize celiac disease :o And know its manifestations. And know it doesn't go away. Don't be a mouse, be the lion that roared :D

Some of these things can be, if not cured, at least reversed and improved. Many here have risen up and walked again, have got off disability, made a new life. All is not lost - you have to believe that things will get better. We can collectively give you some advice and help. Give us some more specifics after your GI visit and we will give you support and encouragement. Good luck with your appointment.

Skylark Collaborator
Skylark
Posted

I'm glad you've finally decided to accept the celiac diagnosis. Is this where I get to say "I told you so?" :P Kidding, of course. It's great news that you're starting to heal!

Here's the thing. It doesn't matter a damn what your doctor thinks. The diet does not require a prescription or a doctor's support. What matters is that you get well. If the GI doesn't believe you, fire her and find one who will treat you for symptoms and not rely too much on iffy tests. Good luck, and go get 'em!

Neshema1 Newbie
Neshema1
Posted
  • Author

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

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Neshema1 Newbie
Neshema1
Posted
  • Author

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.

Neshema1 Newbie
Neshema1
Posted
  • Author

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

Skylark Collaborator
Skylark
Posted

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

Really? I'll watch for your update.

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