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I ended up seeing a Gastro specialist after all (well it kind of came about through a huge mixup, but anyway). He was rather irritated that my primary care physician wouldn't run a Celiac Panel when I asked for it back in early December. So he ran one for me that same day, but I'm expecting it to be negative since I've been trying to eat gluten-free since last November. I warned him about this before the test, but he wanted to do it anyway.

He was well aware of the high false-negative rate, too. So he's also got me an appt. for an endo on March 28. I'm hoping 9 weeks of eating gluten will be long enough. I started eating it again that night, on the 27th. Of course I wasn't 100% gluten free prior to that anyway, so I'm hoping if there was villi damage that it hasn't repaired fully.

He said if the endo is negative, it could be that the damage was down farther than the scope could reach, so he will have me do the pill cam thing. If that also shows nothing, he will move on from there. So he is being amazingly thorough with everything, which I didn't expect after stories I've heard from these forums and elsewhere. He seems well-educated in Celiac Disease. Yay!

Okay, what I'm really wanting to find out from others here is this.... are you aware of what's going on during an endo procedure?? I have a huge fear of suffocating and can't imagine being fully aware of this tube going down my throat for twenty minutes. If anyone's willing to share their experience, I would really appreciate it. He did say I would be sedated, but that means I'll be somewhat awake still. :( Kind of wish they'd just knock me out completely.

Also, did anyone else come up positive after a 9-week gluten challenge?

Thanks for letting me ramble. Can't believe I'm even pursuing this again.

Edited by Jaymie Jaymz

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Hello, it sounds like you have a great doctor! : )

I had my endo just last week and I was totally out, I remember nothing. When I woke up I felt so good I thought maybe they had forgot the endo (I also had a colonoscopy). For some reason I thought my throat would hurt but nothing hurt. -not even later. It was like I had the best nap of my life. No hungover feeling and I was awake and alert pretty quick.

My bloodwork 7 weeks ago came back postive for celiac and I had to wait this long for the endo. I ate gluten the whole time so it wouldn't screw my test up so can't answer your other question, sorry.

Best wishes,

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There is no way on the face of the planet I would ever eat gluten again for any reason. And I am glad I ended up diagnosing myself. I became seriously ill a year ago and started looking online because I couldn't figure out what was happening to me. I would get better when I only ate salads and lemon juice, vegetables and salt, fruit and fruit juices and occasionally rice and potatoes--no breads. I always thought it was what I was eating with the gluten containing products that was causing the problem until one day a lady at the health food store said, "Do you think you might be celiac?" Then I thought it couldn't happen at age 55 so I dismissed it for another few weeks. Then one night I said, "I'm trying this for a week." I was better within 24 hours. Seriously. As God as my witness I will never eat gluten again.

I am scheduled for an endoscopy & colonoscopy on the 17th of March depending on the outcome of my visit to the hematologist. It is that far out because I also started having problems with GERD again. I hadn't had since I started on a gluten-free diet but then went to the 1st medical doctor and bang it came on again. He wasn't much help either. He did tests but nobody has taken my pernicious anemia and other health problems seriously. I know I have overgrowth but nobody seems to want to give me the antibiotics for that. Nobody seems too concerned about the mucus & blood either. I have a really outrageous deductible and all they seem to want to do is rack up big medical bills. I guess the GI is going to do biopsies but if they don't treat what is bothering me, what is the point?

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Jaymie, I can totally understand your being very anxious about the endo. I was, too. They sprayed my throat with something...the anesthesiologist said to think of it as 'cheap Scotch'. HA! I told him I don't even like good Scotch. But honestly, my greatest fear was fear itself.

The procedure only takes a short time (10 to 20 min.) and I was totally unaware of it even being done. My GI took six biopsies and the scope also showed that I had gastritis, which is just another word for inflammation. I didn't even have a sore throat afterward although I was kind of loopy. :P They gave me a sheet or two of colored pictures, which showed the inflammation and exact areas that were biopsied.

After I came home and had lunch, I thought I'd have a nap but wasn't tired enough to sleep but did take it easy the rest of the day.

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When they do an endoscopy they not only give you drugs to sedate you and make you partly asleep, but they also give you a drug that causes amnesia so you won't remember what has happened. You aren't fully asleep, which is safer for you, but you don't remember what happened. I remember double-checking my identity in the procedure room, then everything went squiggly and the next thing I remember is farting happily on my way back to the recovery room.

ETA: I farted AND burped. Had both ends scoped.

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Yea as others have mentioned the endo is really a pretty easy procedure with no aftereffects for most. You noted the doctor said something about high false postive rates for the celiac panel. Hopefully you meant to write false negative as false positives are very, very rare. It does sound like you have a good doctor who recognizes that the endos can have false negatives also.

I hope you get some answers and as soon as the endo is done get on the diet strictly. Your body may give you the answer before you even get the results back.

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You all are cracking me up with your endo stories! But more importantly, I feel a whole lot better about it now. I appreciate you guys sharing with me.

Yes, RavenWood, I meant false negatives. I changed that in my post to avoid confusion to anyone else. I think the brain fog is already back! lol. All the other issues sure are.

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They sprayed my throat after I went to sleep I guess, I know they didn't do it before hand.

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They sprayed my throat after I went to sleep I guess, I know they didn't do it before hand.

If they'd have done it before hand, you'd remember it! :lol: :lol: :lol:

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There is no way on the face of the planet I would ever eat gluten again for any reason. And I am glad I ended up diagnosing myself.

If I had a full-time job, I probably wouldn't either. Right now I homeschool my daughter, so I'm here the majority of the day. I also don't have the super severe reactions that many do.

....Then one night I said, "I'm trying this for a week." I was better within 24 hours. Seriously. As God as my witness I will never eat gluten again.

I believe you. My relief came within a week of being off gluten. So are you only getting an endo done IF your bloodwork comes back positive? That should only be the first step in trying to diagnose you.

I have a really outrageous deductible and all they seem to want to do is rack up big medical bills. I guess the GI is going to do biopsies but if they don't treat what is bothering me, what is the point?

I'm sorry you're having such a rough time right now. It does seem that doctors love to rack up the bills more than actually solving a patient's problems. I'm grateful that the army is picking up my tab right now, which is another reason I want to get the procedure done and over with while we're covered.

If you're really feeling great off of gluten, you could always self-diagnose and go 100% on the diet, get your health and life back.

Let us know how your blood panel comes out...

Jaymie

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I've had 4 endos over the years and I actually remember the last 2. It was still easy. with the med they put you on you really don't care what happens at the time. Don't worry its not as bad as it sounds.

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Thanks, Wadaman. I sure hope my testing will be over with just one round. Four is an awful lot.

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I am the biggest scaredy cat with medical stuff- I used to faint getting my blood tested. Honestly the endo was not bad at all- I don't remember any of it and it was super quick. The worst part was getting to the hospital at 6:30AM! No big deal at all.

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