Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Going In For Endo On Friday, Questions
0

20 posts in this topic

Hi everyone,

Going in for endo this Friday after negative bloods (TTg Iga and Immunoglobulin A).

I know the doc should've ordered more tests but I am thinking the endo is a good next step. What do you guys think? Of course I am worried it comes back negative not giving me answers but it also assures me that other issues can be ruled out. Is more blood testing necessary to completely rule out celiac?

Also, I am freaking out about the procedure itself but trying to stay calm. The anesthesia concerns me although the doc said it is jus a deep relaxer.

Any thoughts and words of encouragement are appreciated!!! :D

0

Share this post


Link to post
Share on other sites


Ads by Google:

My blood tests were all negative so I wouldn't automatically worry about the endo results. My biopsy was positive which is how I ended up here. (I'm so glad I did. :) )

I always get paranoid about the anesthesia. I know I shouldn't, but I do. I don't usually worry early, but then during the last 24 hours or so I get super anxious. I've never had a problem though and always wake up feeling... I won't say fine, but as I should. I had killer sore throat for a few days after my endo. I can't speak for other side effects as I had my gallbladder removed the day before so who knows what was what at that point. I would just recommend having some cough drops or sore throat drops around the house. I like Halls.

Remember, no matter the results, nothing is stopping you from being gluten free to see if it helps. A negative biopsy doesn't mean you don't have a gluten intolerance which can cause many of the same problems but there simply isn't a test for. If you got this far and you're prepared to go gluten free and okay with it, I say go for it either way.

0

Share this post


Link to post
Share on other sites

Try to relax about the procedure! I know each person's case is different, but I had a very positive experience! I was very nervous but my appointment wasn't until 4pm and at that point I was just ready to get it over with since I hadn't eaten or drank anything since 8pm the night before lol. Anyway, before I went back I wrote down a list of all of the questions I had and made sure to ask them to the nurse. From there, I got into a gown, got hooked to the IV, spoke briefly to the doctor, and then rolled down the hall to the procedure room. Once I got in there the anesthesiologist talked to me and was asking me about school and stuff. They put an oxygen mask over my face and told me that it was going to smell bad and then they gave me the anesthesia and I started getting really hot and then I started to panic because I couldn't ask them if I was supposed to feel hot because of the mask. That's the last thing I remember and honestly the worst part of the experience for me (and it wasn't even that bad.) When I woke up my parents were there and I had some ice cold water. They kept me for a little bit just to make sure I was good and then they let me leave and I got to go eat haha. From the time I woke up to the time I got home I only remember bits and pieces but it wasn't bad at all. I was actually feeling pretty good haha. Apparently I told my mom "these are some goooooooood drugs!" For the rest of that night my mouth was really dry and it was like I couldn't get enough to drink. The next day my throat was scratchy but it didn't really hurt.

It was my first time being drugged up and I was really nervous but it ended up being completely fine haha. If I had to do it again I wouldn't be nervous at all. Like I said, everyone is different but I think most peoples' experience with this have been fine.

Good luck! : )

0

Share this post


Link to post
Share on other sites

Thank you so much!!!! I love the reassurance people give on this blog! It's awesome!!!

0

Share this post


Link to post
Share on other sites

Hi everyone,

Going in for endo this Friday after negative bloods (TTg Iga and Immunoglobulin A).

I know the doc should've ordered more tests but I am thinking the endo is a good next step. What do you guys think? Of course I am worried it comes back negative not giving me answers but it also assures me that other issues can be ruled out. Is more blood testing necessary to completely rule out celiac?

Also, I am freaking out about the procedure itself but trying to stay calm. The anesthesia concerns me although the doc said it is jus a deep relaxer.

Any thoughts and words of encouragement are appreciated!!! :D

I am so in the same boat you are. My tests came back negative and well and I am also having an upper endoscopy done this Thursday. I am a little frustrated because I know something is wrong with me but supposedly I am lactose intolerant with no diarrhea! I do not believe that for one second. I know how you feel about going under anesthesia. This will be my 6th time going under and every time I wake up, I get sick to my stomach. If my biopsies come back negative, I am going gluten free to see if my symptoms change after eating. I am tired of feeling bloated, tired, and sick to my stomach after eating... Do you have a rash?

0

Share this post


Link to post
Share on other sites




I am so in the same boat you are. My tests came back negative and well and I am also having an upper endoscopy done this Thursday. I am a little frustrated because I know something is wrong with me but supposedly I am lactose intolerant with no diarrhea! I do not believe that for one second. I know how you feel about going under anesthesia. This will be my 6th time going under and every time I wake up, I get sick to my stomach. If my biopsies come back negative, I am going gluten free to see if my symptoms change after eating. I am tired of feeling bloated, tired, and sick to my stomach after eating... Do you have a rash?

Hey! So nice to find someone going through the same! Hopefully we'll both find answers! The only rash I have is a non-itchy one on my buttocks that I noticed this year when my symptoms got worse. Since it doesn't itch I am sure it is not gluten related. I do have eroding teeth which is usually associated with celiac and my youngest son has similar symptoms to mine (fluffy stools and he sometimes complains of stomach and leg pain). I also don't have diarrhea (my stools are fluffy and dissolve in the toilet water) but was once told I was lactose intolerant and I did have diarrhea back then. I am a vegan now so I don't eat any dairy, meat, or eggs . Do you have a rash? I wish you the best of luck this Thursday! Keep us posted on your results! :D

0

Share this post


Link to post
Share on other sites

Endoscopy is not hard or bad at all. Out of all the procedures i've had done, it was probably the easiest. I had an early morning appointment. The nurse went to put the IV in me and couldn't find my vein, so she went off to find an ultrasound machine, where she then told me my veins were deeper than what a "normal" persons is. Easy peasy for a change! She also gave me a warming gell icepack thing to play with (originally was for the IV, but she let me keep it as it was one use only). That helped me keep my mind off of it.

Then it was time for the procedure. I get wheeled into the room and had to wait for about 15 minutes. Then i was given this bit thing to put in my mouth (ugh i hated that thing) as they put the anesthesia into my IV and to lay on my left side. Last thing i remember was trying to swallow with that stupid bit thing in my mouth :lol:

Waking up from such a knockout is difficult for me. For example, with my gallbladder removal surgery it took me about 2-3 hours to come out from under (normally people wake up and are able to leave by about noon or so, i didn't till about 3 or so pm). So there was an additional amount of time and was still sort of out of it for the rest of the day. My throat was kinda sore, but at the time of the procedure, my throat was already raw soooo (due to my GERD and the vomiting i went through before going gluten free).

0

Share this post


Link to post
Share on other sites

I had mine in October and it was fine. I was panicking beforehand.

Make sure you have someone to take you home, some people are a bit spacy after, try and have a quiet time after.

Good luck, let us know how it goes

0

Share this post


Link to post
Share on other sites

Thank you so much for your kind responses! I think I am psychologically prepared for this. Hopefully I don't freak out tomorrow! :wacko:

Now physically speaking, I am not doing that good since this las week I upped my gluten intake and my knees are killing me. Plus my fluffy stools (sorry, TMI) are way less solid than they used to be!

Like other people on this forum have said, it is not that I want to be celiac - I just want answers and to find out why my son and I have similar symptoms. Next step after my endo is having him tested, for sure!

0

Share this post


Link to post
Share on other sites

Hey! So nice to find someone going through the same! Hopefully we'll both find answers! The only rash I have is a non-itchy one on my buttocks that I noticed this year when my symptoms got worse. Since it doesn't itch I am sure it is not gluten related. I do have eroding teeth which is usually associated with celiac and my youngest son has similar symptoms to mine (fluffy stools and he sometimes complains of stomach and leg pain). I also don't have diarrhea (my stools are fluffy and dissolve in the toilet water) but was once told I was lactose intolerant and I did have diarrhea back then. I am a vegan now so I don't eat any dairy, meat, or eggs . Do you have a rash? I wish you the best of luck this Thursday! Keep us posted on your results! :D

I had my EGD done this morning and it went good. The procedure took about 15 minutes and I felt fine after waking. My throat is a little scratchy and I'm coughing some. Yes, I do have a rash and it seems to be mainly on my arms, legs, buttocks, and I get some on my breasts. They start out as little red bumps then the bumps get bigger and form a blister like lesion in the middle. Once they pop, it burns and itches like crazy. I have an appointment with my dermatologist in January and I'll have him do a biopsy on them. I also have eroding teeth as well. I noticed my teeth have turned yellow and I brush and floss as recommended. About 6 years ago, I had 9 cavities at one time and just had my top wisdom teeth removed back in September because they were eroded and almost gone.

My GI told me he didn't think I had celiac disease because my blood work was negative and my CT scan didn't show signs, well my EGD showed otherwise. My duodenum (the first smart of the small intestine) is completely flat and has no ridges. My stomach was also inflamed so I have gastritis, and my esophagus shows signs of erosion (possibly from acid refux). He took some biopsies and I will know the results next week sometime. He told me go ahead and start taking lactase pills before I eat and start on the gluten-free diet to see how I feel and I will see him back in 3 weeks. Good luck tomorrow with your procedure. Let us know how it goes hon. :D

0

Share this post


Link to post
Share on other sites

I had my EGD done this morning and it went good. The procedure took about 15 minutes and I felt fine after waking. My throat is a little scratchy and I'm coughing some. Yes, I do have a rash and it seems to be mainly on my arms, legs, buttocks, and I get some on my breasts. They start out as little red bumps then the bumps get bigger and form a blister like lesion in the middle. Once they pop, it burns and itches like crazy. I have an appointment with my dermatologist in January and I'll have him do a biopsy on them. I also have eroding teeth as well. I noticed my teeth have turned yellow and I brush and floss as recommended. About 6 years ago, I had 9 cavities at one time and just had my top wisdom teeth removed back in September because they were eroded and almost gone.

My GI told me he didn't think I had celiac disease because my blood work was negative and my CT scan didn't show signs, well my EGD showed otherwise. My duodenum (the first smart of the small intestine) is completely flat and has no ridges. My stomach was also inflamed so I have gastritis, and my esophagus shows signs of erosion (possibly from acid refux). He took some biopsies and I will know the results next week sometime. He told me go ahead and start taking lactase pills before I eat and start on the gluten-free diet to see how I feel and I will see him back in 3 weeks. Good luck tomorrow with your procedure. Let us know how it goes hon. :D

Yay for you having your procedure already done and over with!!! I am so happy you are already getting the answers you needed. Thank you so much for posting about it! Hopefully starting your gluten-free diet will make you feel better! :rolleyes: Will post about my procedure when I am able to do so as it might help others just like you helped me!
1

Share this post


Link to post
Share on other sites

Well, so I went for the endo very early in the morning and it really was a breeze! Woke up feeling perfectly fine! Not even a sore throat! Only thing doctor found was non-erosive gastritis and now waiting for the biopsy results.

He said if I have had the gastritis for a loooong period of time (years) this would explain the eroding teeth and my symptoms.

Thoughts?! And thanks for everyone who offered their words of encouragement!!!! It meant a lot and it helped tons!

0

Share this post


Link to post
Share on other sites

Well, so I went for the endo very early in the morning and it really was a breeze! Woke up feeling perfectly fine! Not even a sore throat! Only thing doctor found was non-erosive gastritis and now waiting for the biopsy results.

He said if I have had the gastritis for a loooong period of time (years) this would explain the eroding teeth and my symptoms.

Thoughts?! And thanks for everyone who offered their words of encouragement!!!! It meant a lot and it helped tons!

PS--- I asked why he didn't order other Celiac tests before and he said the EMA is not used anymore and the DGP can be positive for other reasons that have nothing to do with Celiac. Hmmm... I have read here this test is very Celiac sensitive so I don't know. Any words of wisdom???

Thank you so much!

0

Share this post


Link to post
Share on other sites

PS--- I asked why he didn't order other Celiac tests before and he said the EMA is not used anymore and the DGP can be positive for other reasons that have nothing to do with Celiac. Hmmm... I have read here this test is very Celiac sensitive so I don't know. Any words of wisdom???

Thank you so much!

Have you received your biopsy results back? I have not heard from my GI yet, and my procedure was over a week ago. He did say it would take 7-10 days, but I think I'm going to call tomorrow anyways. I have been gluten-free for a week and I still do not feel well after I eat and I think it is from the gastritis and I can not wait to start feeling better. I also started taking Acidophilus and I am hoping this helps with my GI tract. Keep me updated on your results. :D

0

Share this post


Link to post
Share on other sites

Have you received your biopsy results back? I have not heard from my GI yet, and my procedure was over a week ago. He did say it would take 7-10 days, but I think I'm going to call tomorrow anyways. I have been gluten-free for a week and I still do not feel well after I eat and I think it is from the gastritis and I can not wait to start feeling better. I also started taking Acidophilus and I am hoping this helps with my GI tract. Keep me updated on your results. :D

Not yet! He said it was going to be about a week so I am hoping he calls tomorrow. I haven't gone gluten-free just because something tells me to get tested with the whole panel in case results come back negative (I only had the Ttg Iga and total IGA tests done). I am just so worried to be left without answers! He didn't see any abnormalities to the naked eye so we'll see what the results say. I don't even know how many biopsies he took! Ugh. Even though I am not gluten-free yet I haven't been heavily glutening myself. My knees hurt and my stomach bothers me constantly! I don't think this is just a matter of non-erosive gastritis but we'll see. Please keep us posted on your results as well!

0

Share this post


Link to post
Share on other sites

I have Panic Disorder. I am on SSDI because of it. So I was terrified of having the endo. My anesthesiologist was a godsend. He knocked me out cold and I felt nothing and woke up right as rain and thirsty. Got dressed, got a nice frozen bottle of water from the nurse and Hubby took me home where I slept all day because the extra Xanax the doctor had me take. My throat didn't really hurt I think because of the nice cold ice water I got as soon as I was conscious enough to swallow. However, I was clean for 9 months. They found GERD damage and stopped looking so it was a waste of time for me. My GI was also very ANTI-Celiac. He believed it to be in vogue. He was fired.

0

Share this post


Link to post
Share on other sites

I have Panic Disorder. I am on SSDI because of it. So I was terrified of having the endo. My anesthesiologist was a godsend. He knocked me out cold and I felt nothing and woke up right as rain and thirsty. Got dressed, got a nice frozen bottle of water from the nurse and Hubby took me home where I slept all day because the extra Xanax the doctor had me take. My throat didn't really hurt I think because of the nice cold ice water I got as soon as I was conscious enough to swallow. However, I was clean for 9 months. They found GERD damage and stopped looking so it was a waste of time for me. My GI was also very ANTI-Celiac. He believed it to be in vogue. He was fired.

Hi Darkfire Ann! So were you ever diagnosed with Celiac after all? Did you have blood tests done? What did you do after your endo? Are you gluten free? Just curious to see what road you took after the procedure! :D

0

Share this post


Link to post
Share on other sites

Hi Darkfire Ann! So were you ever diagnosed with Celiac after all? Did you have blood tests done? What did you do after your endo? Are you gluten free? Just curious to see what road you took after the procedure! :D

I had blood tests, all negative, I was 9 months clean. My Endo was a idiot. BUT he did send me to the allergist/immunologist. I was found to be allergic to: Wheat, Corn, Rice, Banana, Cantaloupe, Peaches, Carrots, Crab, Tuna, Fish, Shrimp, Barely, Oats, Hops, and Rye. Patch tested for Nickel, PPD, Black Rubber, Latex, Tylenol and ALL household/environmental allergies. Again, blood tests all negative.(I think need copies was 3 yrs ago) He also DXed me Celiac and warned against Dairy. We kinda fought over that.I was gluten-free at the time over 9 months clean. I wasn't for a while(long story) and now have the worst DH rash I have seen except maybe one or two pictures look worse than mine. Derm also Dxed me with DH rash Celiac Sprue. My Iron is tanked and am on pills but I am on 100MG Dapsone a day so it's a slippery Iron slope. The Derm did the test to make sure I can take Dapsone. He also did IFA,ANA which is positive now with a titer of 1:40 and a speckled pattern.

0

Share this post


Link to post
Share on other sites

Hello! Quick update:

After waiting almost 2 weeks for my endo results, I got a call from the nurse yesterday who said the doctor wanted to see me for my results. After a moment of TOTAL PANIC :blink: and after she scheduled me for the appointment I asked what he had said and if it was something bad. She then just said, "Oh no, that's what I was going to say next. It is nothing bad so no worries." SIGH, ummmm, maybe you should start by saying that when you call people?!? SIGH.

Anyway, has anyone else have had to go back to discuss results? I am still a little worried but she did say "nothing bad, no worries".

My appt. is on Monday, will update then! And please let me know your thoughts or if you have gone through the same.

Thanks everybody! :P

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,642
    • Total Posts
      921,567
  • Topics

  • Posts

    • I was only asking because when ferritin is low that you can experience hair loss/fatigue etc. even if your other iron levels are in range. This just happened to me so I thought I would share just in case it helps you. Ferritin should be above 50, not just "in range."  I've been on iron supplements and much better now. This may not be your problem at all, but I would have them check your ferritin levels. Low iron or anemia is common with celiac. The ferritin test is measuring how much iron is stored in your body. FYi: Iron binding capacity is really telling you how much protein your liver is making in order to carry that iron around. Usually, iron binding capacity will be higher in the range when iron is low.
    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,647
    • Most Online
      3,093

    Newest Member
    iFitCeliac
    Joined