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Wish Me Luck?
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Well, I've decided to have a scope done and some biopsies. I had bloodwork done a couple of months ago that was only positive for AGA IGAs. One doc said no celiac, an allergist said possibly celiac and I went gluten-free anyway. It has helped, but every couple of weeks, I am still getting stomach trouble that puts me out of work at times and DEFINITELY subtracts from my life. So I made an appointment with a GI, saw her today, and Tuesday I'm going to have a scope/biopsy done.

I think I have a really good chance of a negative biopsy as I've been completely gluten-free for a couple of months and nearly gluten-free (due to other allergies) for over a year. I explained to the doctor, who is wonderful, that regrdless of biopsy results, I'm staying gluten-free...no matter what tests show, I know I get sick from wheat, etc. But I really want to check and make sure its nothing else, if that makes any sense. She understands and supports that, thank goodness. She is going to take several samples from my upper GI, check as far as she can go and also take stomach/esophegus (sp?) samples. I asked her to PLEASE PLEASE check everything she can "while she's in there"!

Anyway, please wish me luck. I am absolutely terrified of having this done (my personal worse fear is choking, being unable to breathe, etc), but I've read from so many of you that its not bad, that I'm just going to do it.

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Good luck to you, Jaycee! I don't know if you've had the endoscopy before, but it's not bad at all. Weird to think that someone will put a tube down your throat, but most don't remember much from the procedure due to the drugs they give.

Always a great idea to be pro-active about your health! I hope the test offers you some conclusive results.

Gretchen

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Good luck, jaycee.

Try not to worry about the biopsy, cause once it's over, you'll realize that it isn't so bad. About the fear of not being able to breathe, try to remember that when you're going about your everyday activities, you probably breathe mostly through your nose, anyway. Also, this has been performed thousands of times on such a variety of people who haven't had problems with the procedure. Furthermore, they will probably attach a number of sticky pads with wires attached to them to your body (they put about four on me, mostly around the upper cheast area). They use these to constantly make sure that you're all right. Therefore, if you had difficulty breathing, they would see right away that heart rates would go crazy or whatever.

Once again, good luck. You'll be fine.

Best Wishes,

celiac3270

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Good Luck from Canada!

I can remember the last time I had that done, they didn't even use drugs, they just sprayed my throat with something that made it numb. The gagging feeling only lasted a few seconds, then you can relax.... I imagine that now that they give drugs, it would make it that much more tolerable....

Good Luck! I will be thinking of you on Tuesday......

Karen

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It will be easy. The worst thing was the numbing spray. That stuff tasted like spray paint smells, and I thought it was going to trigger an asthma attack. That is about all I remember. My endo was to look for ulcers, but the doc found inflammationa dn redness, so he biopsied it and found celiac. I had previously been diet-diagnosed. I have been gluten-free since Feb 14, and the endo was Sep 15, so there is a possibility that you still might have damage. I agree that your doc should look for everything possible while she is in there! It is your health, take charge!

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Good luck! I'm sure you'll be fine! :-)

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AWWW! I hope it goes well and wish you so much luck and will think good thouhts for you. Just be calm and it will be over with in no time!

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Wheeeee! Well, its over and all the fuss was for nothing. Thank you all for your support...........it really helped.

One bad note, a medicine I take for MS made the sedative that they give for the scope non-effective for the most part. 4 times the regular dose and I was still awake, so they just went ahead. But, all in all, it wasn't bad (although when it wore off a little bit I was just in tears for some reason).

I've got the pictures....first, normal stomach esophegus (sp?) and small intestine. No ulcers, no inflammation, everything looks great. They took biopsies throughout and that will be back in about a week, but the only thing that the doc thinks will show up is celiac. (nothing terrifying in my stomach like cancer or anything, which was a real fear of mine). She also understands that I've been gluten-free for 2 months, nearly gluten-free for over a year, the biopsy may be normal but can NOT be used to rule out celiacs.

So, I'll let you know what we find...........thanks again!

Jen

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    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
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