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Hi Everyone,

I'm new to this forum, although I have spent some time reading the information on this site - I learned so much here, so thanks already!! I'm hoping someone here can answer some questions for me!

I first heard of Coeliacs about a month ago, when there was no explanation for my ever-worsening iron deficiency (discovered due to a routine doctor's appointment where I just happened to ask about some significant bruising I couldn't explain). A blood test for Coeliacs showed that I was IgA deficient and therefore could not be diagnosed this way. As such, I was sent to a gastroenterologist. I had my appointment with the gastroenterologist today - he is really nice, knows a lot about Coeliacs and thinks I am a 'great candiate' for a diagnosis of Coealics. However, before he diagnoses me, he wants to do and endoscopy while I am under sedation...

and I am SO scared. I've hated hospitals all my life (at eight, after having my tonsils removed I screamed at the nurses, pulled out my IV and hit a nurse across the face, all before I woke up in recovery!). I'm hoping I will be a better patient this time, but I'm still concerned about the procedure. I understand that it doesn't take long or cause much discomfort and that there are few risks involved. What I was interested in are other people's experiences with the sedative.

I have a serious (albiet stupid) fear of vomiting. My gastroenterologist assured me that there would be no gagging or vomiting during the procedure (and after all, I will be asleep), but I'm concerned about the side effects of the sedative. If anyone could share their experiences of the endoscopy and/or the sedative (especially regarding the side effects and if it made them ill) I would really appreciate it.

Thanks so much for all the help,

Elise

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The endoscopy is not as bad as you think. Call the DR office and have them explain it to you in great detail - you'll feel better knowing exactly what will be happening. Express your concern about your last experince and see what they say. Some people opt to stay awake for the whole procedure, I couldn't handle that.

From what I remember, you fast the night before, you wait for a little while in the office. Once they are ready for you, they put you out. Then they numb your throat. Then they insert the tube and do their stuff. You will not remember any of it. I think it is a pretty quick procedure. Especially compared to a surgery. There is no pain from the biopsies. Make sure an adult that you trust to ask questions for you is present for your endoscopy. They will have to drive you home. You will not be able to think straight or remember much. Mine was done in the doctor office.

I have had several surgeries over the years and realized that you can request a sedative before procedure. You can request that they put you out quickly. One dr was trying to be nice and chatting with me and the nurses in the OR, and I finally had to just interrupt and say can you please knock me out now. I am getting very nervous. They stopped and put me right out and I felt much better. Only once I have had a hard time coming out of the anasthetic. I just couldn't wake up and stay awake. They will not let you leave in that state. You have to wake up and be functioning.

Overall, I think most people who are at thepoint of getting an endoscopy are very nervous and anxious because they haev been sick and miserable for a long time.

Make sure you are still eating gluten before your endoscopy. Be aware that few Gastro's can give much info about the diet. Come back to this site and ask questions.

Good luck.

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I tend to get sick from anesthesia or sedation. When I had my hysterectomy a few years ago I got very sick after I came out of the anesthesia...throwing up and all.

I was worried about that when I went in for my endoscopy/colonoscopy last year. First of all, it's not anesthesia in the true sense...it is sedation. I did tell the nurse who was administering the sedation that I tend to get sick from something...either pain meds or anesthesia/sedation. I did feel a bit woozy afterwards, but did not get sick. I had a feeling of lightheadedness the rest of the day though...still, not bad.

I had to have two more endoscopes after that last year, and both times I mentioned the sickness thing to the nurse who administers the sedation and on both of those times, I felt fine afterwards...no sign of sickness at all.

Make sure you also mention it to the person administering the sedation, they can put something in or adjust dosages, etc. to help you out...the doctor may not remember to tell them when the time comes.

The procedures themselves...well, I don't remember any of it from the time I got the IV to the time I woke up in the recovery area. I had very slight sore throat afterward, hardly enough to notice really.

The nurses were all wonderful with me, so hopefully you can tell them you are nervous and they will set you at ease!

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Thanks for your responses and advice!

Gypsyqueen - I don't think I could stay awake for the whole procedure either - I probably wouldn't go through with it if I was awake as it was happening! The procedure doesn't sound too bad, and my mum is taking me to have it done, so she will be there to drive and ask questions. I will definitely ask to be put under sedation as quickly as possible. The Gastro I saw seemed to have a lot of knowledge about the diet, and said that he would prodvide me with information on the diet and specialty stores, as well as a society I could join ( I am still eating gluten at thsi stage). However, I'm sure I will be back here for more help!

Donna - I was really glad to hear you have had a similar experience to me - anesthesia has also caused me to feel very unwell and to throw up. I'm glad to hear that the sedation did not have this effect on you. I will definitely mention this to the nurses on the day, and list it as a special concern on my consent forms. When you say they may be able to put something in or adjust the dose, are you referring to an anti-emetic or anti-nausea medication, or just to being given a smaller dose of sedatives to mimise the side effects?

Thank you for you help,

Elise

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Donna - I was really glad to hear you have had a similar experience to me - anesthesia has also caused me to feel very unwell and to throw up. I'm glad to hear that the sedation did not have this effect on you. I will definitely mention this to the nurses on the day, and list it as a special concern on my consent forms. When you say they may be able to put something in or adjust the dose, are you referring to an anti-emetic or anti-nausea medication, or just to being given a smaller dose of sedatives to mimise the side effects?

I think they did both for me...they may have put something in like an anti-nausea med, but I also think they adjusted the dose. They also told me that there were some different sedations they could use and if you know the specific one that you react to they can use a different one. I didn't know which one I had been given, so I'm pretty sure he must have just added anti-nausea stuff and adjusted the dose.

I was pretty groggy after the first scope (which also included a colonoscopy)...took me a while to come out of it, but I felt good. I'm thinking in this one they may have just added antinausea stuff.

The second and third scopes I came out pretty quickly and was much less groggy, so I'm thinking in those two instances the guy lowered my dose and maybe added antinausea stuff.

I had VERY nice helpful people who worked on me throughout the whole procedure!

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I had an endoscopy last year though no biopsy. It was really quite easy, I only remember laying on my side on the table with the IV in, and then waking up later when it was all done. I was a little spacy and weak for awhile but otherwise no other effects.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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I had my endoscopy today, un-sedated. It wasn't very nice to say the least. I imagine it will be much easier under sedation because my problem is that I got panicky feeling the thing in my throat. I would never go through it again without sedation. No way.

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Oh, and I have a question which I hope can be answered. After the endoscopy I was told that everything looked normal, but obviously the biopsy results are the key. How often will the intestine look normal on the endoscope but show signs of celiac under the microscope? I'm not sure if I should take those results as an early sign of my not having celiac or not.

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Oh, and I have a question which I hope can be answered. After the endoscopy I was told that everything looked normal, but obviously the biopsy results are the key. How often will the intestine look normal on the endoscope but show signs of celiac under the microscope? I'm not sure if I should take those results as an early sign of my not having celiac or not.

My doctor also said that everything looked normal when he did my endoscopy, but my biopsy showed inflammation/damage. My IgA and tTg tests both came back normal, so I'm a seronegative Celiac. My doctor wants me to go back on the 18th, but I have no idea what for. (I'm guessing genetic testing is up next.) My symptoms have been: 1) a really annoying cough for 1 year that didn't respond to asthma or allergy meds, 2) a "lump" feeling in my chest when I swallow that didn't improve with Aciphex or Nexium, 3) GERD, 4) weight loss of 35 lbs in 5 months (but no diarrhea), 5) peripheral neuropathy in my right thumb & left big toe, 6) syncope (fainting) and/or seizure after having a diarrhea bug for all of 2 hours. Since going gluten free almost 2 weeks ago the cough, GERD, and lump feeling are vastly improved.


Gluten Free since 5/28/07

Celiac Disease diagnosed by biopsy 5/25/07

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Oh, and I have a question which I hope can be answered. After the endoscopy I was told that everything looked normal, but obviously the biopsy results are the key. How often will the intestine look normal on the endoscope but show signs of celiac under the microscope? I'm not sure if I should take those results as an early sign of my not having celiac or not.

I would think that there would have to be MASSIVE damage to be visible during the scope. I think, although can't state any studies, that quite often the damage is not seen until the biopsies are studied under a microscope.

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OK. That's good.

Tell you what, did any of you who have celiac and who had a positive biopsy result also have a positive result of the endoscope examination? You make it sound like that would actually be rare.

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Thanks for all you replies! I had my endoscopy done on friday, and everything went fine. I felt a little sick and quite lightheaded afterward, but I think that was more to do with not having eaten for 18 hours (they were running really behind schedule... not good for my nerves!) I still wouldn't want to do it again, but it wasn't as bad as I thought. Thanks for all your responses beforehand!

Mattj - Firstly, I can't believe you did that without sedation, I very much doubt I would have gone through with it if I had been awake! I was also told by my gastroenterologist that everything looked normal to him, but I would need to wait for the biopsy results. He told me at my initial appointment that this happens to almost everyone, and it is really common for there to be damage that is not visible until the biopsies are under the microscope.

Apparently, it is rare for a gastroenterologist to be able to diagnose coeliacs without biopsies. Like Donna said, I think there would have to be a lot of damage done for it to be visible. I did read one post here where a member stated that they were told immediately after their endoscopy to start a gluten-free diet, as the damage was so obvious (sorry, I have no idea where that thread is!) So yes, I think it is rare that coeliacs can be diagnosed from damage seen during the endoscopy. I would think, for there to be visible damage, a person would have to be extremely ill - perhaps it is simply that people do not allow themselves to become ill enough that damage is visble during the endoscopy.

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Thanks Lise.

Without sedation seemed to be the normal for my hospital. We certainly were not urged to opt for sedation and I went in thinking it would be so much easier than it was. It was seriously the single most physically traumatic experience of my life. I have been sedated before for other reasons and I think it would be fine that way, being barely aware of what's happening. It's not like it's painful, but being completely lucid to the discomfort was terrible for me.

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Thanks for all your responses.

I got the results of my biopsy today, and it was negative for coeliac. I actually cried. I was hoping this would be the answer to all my problems (including an iron deficiency, severe anxiety, and on-and-off stomach problems that were diagnosed as IBS when I was twelve, but were never really considered serious).

The reason for the testing was my iron deficiency. Now that they have ruled out gastrointestinal causes, my doctors seem to think that nothing further needs to be done about my low iron. I am worried about this because, as of my last blood test my iron had dropped 10 points in two months and I was close to becoming anemic. I started iron pills at that point (though stopped them for the endoscopy) so that may be somewhat better now. This seems significant to me, and not the kind of thing I just don't worry about investigating. Am I making too much of it?

If anyone has been in a similar situation or just has some advice, I'd really appreciate it. Thanks,

Elise

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OK. That's good.

Tell you what, did any of you who have celiac and who had a positive biopsy result also have a positive result of the endoscope examination? You make it sound like that would actually be rare.

I think it really depends on who is doing your endoscopy.

After my hubby's first endoscopy he was told all 'looked' normal but biopsies were taken (which turned out to be positive for celiac disease)

When my hubby had his 2nd endoscopy his GI actually done it.

He was much more familiar with 'seeing' celiac disease damage and said after that my hubby's bowel was still quite damaged (and the biopsies confirmed this)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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