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Hi Ruchie,
I sure hope that cutting out gluten might solve some or all of your symptoms. I got the blood test to check for celiac and it came back negative so I thought I didn't have it. I went to the GI Doctor a few days ago and because I still have a lot of symptoms he wants to give me a gastroscopy. He said this is the only way to be sure because he takes a tissue sample. This is where they will give me the same drugs they gave me for the colonoscopy and then run a tube down my throat. I am having a hard time thinking about doing this. Stressing a lot which doesnt help me at all!! But if I don't do it, I will never know for sure. I hate this, I hate having to go through this and never knowing what to eat and how it will 'set' with my system... it's awful...
I also suffer with CFIDS which is chronic fatige immune disorder syndrome and kidney stones and a tumor (benign) in one kidney and a cyst in the other. I get so sad over all this sometimes.
I am still eating some gluten because I am having a hard time cutting that out too right now. Gluten is in a lot of stuff you wouldn't expect it to be,and is sometimes hard to find in the ingredients.
I have been looking at the symptoms for celiac on different sites and I do have some of the symptoms.. One was white spots on fingernails which I have.
Please let us know if you feel better in a couple of weeks!
Hope you feel better!
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~GEA~
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GEA,
Thanks SO MUCH for getting back to me!!!
If I understood you correctly, a gastroscopy can tell you if you have celiac, is that right? What else can it tell you? My doc. refuses to believe I have anytihng other than IBS because the celiac test came back negative...but I did some research and the blood tests are hardly %100 accurate! I would be SO GREATFUL if you could tell me more about the gastroscopy...
I'm not sure I could go through all that again either! The colonoscopy I had about a month ago was hard to swallow...mind the pun. I don't know if I can go through all that again either (although, at this point, things are SO BAD I'll do whatever it takes to get better)!
I REALLY hope we, and this entire board, feel better soon! Thanks again GEA! ((hugs))
Ruchie
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Formerly known as Ruchie
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Hi Sweetie!
Oh I'm so glad I could help you... OK I am going to try and describe this the best I can. This proceedure is also called 'upper endoscopy'. The doctor can examine the lining of the upper part of your gastrointestinal tract, which includes the esophagus, stomach and duodenum. The Doctor uses a thin flexible tube which has its own lens and light source. Sometimes they use this test to obtain a biopsy to distinguish between benign and malignant tissues. Biopsies are taken for many reasons.
They also can check for helicobacter pylori( ulcers).
My Doctor said that they can't always be sure with the blood test and this is the only way to find out for sure if you have Celiac disease! You might want to check out this web site too. www.asge.org .This proceedure helps the doctor to evaluate symptoms of persistent upper abdominal pain, nausea, vomiting or difficulty swallowing. It's also more accurate than x-rays for detecting inflammation, ulcers and tumors of the esophagus, stomach and duodenum. Whew! I got some of this information from the brochure they gave me. I hope this helps!
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~GEA~
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Ruchie,
You probably have a similar support system in the US, but I am a celiac with IBS and I have belonged to an internet support group in Australia for 2 years now. Their address is coeliacaustralia@yahoogroups.com.
I get heaps and heaps of advice and information from this group. If you check out the American Celiac site, there probably will be a support group attached. Any way if you have any specific questions, just post them and I'll check through my stockpile of info for you. Good luck with the test, by the way.
Regards,
Bevp
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Hi Ruchie!
I found the gastroscopy far far less stressful than the colonoscopy. Actually, it was a matter of minutes and I would have it done every day if need be. Maybe it was because they did NOT give me proper anastethics? I know that in the States people get a lot of anastethics and are terribly afraid of doing treatments without (don't lots of women ask for C sections because they fear the pain of childbirth or is that a myth?) Well, anyway, they sprayed two different local anastethics into my throat. Then I had to bite onto this plastic ring through which they introduced the tube. And then down went the tube (they had warned me that I might have to gag a bit but I only had a mild urge to cough) and then it took less than 60 secs or so to take the samples. It felt slightly weird but not scary or painful. Out went the tube and I went home for breakfast. The only thing I felt afterwards was a lot of gas both in my stomach and in my bowels. I think they pumped some in to have a better look.
Even if where you are they do insist on knocking you out for the procedure, I'm pretty sure you won't have to go through the prep part (laxative etc) as for the colonoscopy.
If you want to rule out celiac, you should get the gastroscopy, if not you will worry forever about i.e. the tiniest bit of wheat in your soy sauce!!
Good luck
Susaloh
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Bev,
Thank you VERY much! I recall reading your post a while back...how are things going for you?
Can I ask you--what did you eat day-to-day to stabalize given you had celiac AND IBS? Many IBS staple foods have gluten...I'm finding potatoes to be my only staple. (I tired Quinoa yesterday and I was fine for a couple of hours and then I blew up like a balloon from bloating and was terribly gassy when the trapped air was finally released). My supicion though is that vitamins (and equalactin, the fiber supplement I've just started) might have gluten in them. Do you know where I might go to look into this? (The other possibility I've considered is the new fiber supplement is giving me problems. It's tough to know when you begin two new things together...it's also tough to know from one day...I just began gluten free yesterday!). I've read as much as I can on celiac and one important thing eems to be hidden gluten. I want to be as sure as I can that I'm not getting any hidden gluten in my vitamins or from anywhere else!
Thanks for letting me go on and on...I give you a LOT of credit for living with Celiac AND IBS...it's NOT easy (one is bad enough...both together is aLOT to handle). I hope you are doing well and feeling well...
Take care, and thanks for everything! ((((hugs))))
Ruchie
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Formerly known as Ruchie
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GEA,
Thank you SO MUCH!!! (((hugs))) I think we should BOTH get this testing done! I had an upper endoscopy once actually a few years ago...I think I was 19...and they were looking for an ulcer. Does this mean they automatically checked for celiac as well and I can now rest at ease knowing I don't have it? (Because the testing was so long ago...my files are probably in a basement somewhere)  I wasn't showing sympoms for celiac at the time, just ulcer/acid reflux stuff. In any case, it probably won't hurt to have the endoscopy done again. It really wasn't so bad. In fact, I don't remember any prep. for it at all (I don't think I could eat after midnight the night before and the morning of and that was it)! They used an anesthetic...but it was hardly needed! (My mom had one done and she is allergic to many meds...so she was adamant about not having anesthesia...and she was fine without)!
Anyway, I'm def. considering doing it again if it will tell me whether or not I have celaic!!! I'll let you know what I decide. Do you think you'll go through with it? I thikn it's well worth it if it's just an upper endoscopy!
Please keep in touch!!!
Ruchie
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Formerly known as Ruchie
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Ruchie go through with the scope. It is no big deal! I was told I'd have a sore throat for a few days - never had one.
If you don't go through with the scope you will need one anyways to check for an ulcer from all your worrying! 
You can also call the Doc's office who performed your last scope and talk the nurse about your results.
Barb
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Hi Ruchie,
Glad I could help a little! Well, it sounds like from what other people are saying about the proceedure, it won't be too bad. The drugs they gave me made me pretty happy, actually. I just worry about the drugs because I am so very sensitive because of my CFIDS...it takes me a longer than normal time to recover. I plan to go through with it because I really want to know whether I have Celiac or not. I was so relieved when I got the results back from the blood test, but now I am all worried again! I keep thinking that I just CAN'T have this too! My Doctor has given me a script of valium if I get too nervous over this. I liked reading about how everyone else got through this test and that it was really no big deal.... At the doctor's office they asked me if I wanted to watch a video of the proceedure and I was so unerved at the time I was too afraid to see it!!! 
I hope we both can get through this OK, and I will let you know next week after the test. There is no prep part except no food or drink after a certain time. I hated drinking all that stuff to make me go and go anyway!
Thank You for the hugs, I needed that! And Hugs to you too!
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~GEA~
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Ruch,
I just wanted to let you know that I went through an endoscopy last January and it went fantastik! If you have any questions at all, dont be afraid to ask..
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-Angela
Healed in Jesus' Name
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