Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Scared Of The Endoscope


rutland

Recommended Posts

rutland Enthusiast

Today I went to the GI doc. a good one. He sceduled me to have an endoscope on my upper GI tract. They gave me the list of possible complications which are scarey. Possible hemorrage or blood transfusion problems, cardiac arrest, perforation of the lining leading to leakage of gastic juices. Even though they list them and say that this is very rare, it just scares me to think what if?

My situation is that Ive been gluten-free since the summer, at the time I was so sick that I was having MS symptoms that cleared up after going gluten-free. So Ive been on the diet for 4mos. and have not seen a GI doc until now. The reason I made the appt is because Ive been having terrible indigestion that wakes me up in the middle of the night. I get the sweats and my heart starts to race and feel sick to my stomach. I just started on a good enzyme that has helped a lot and Ive only been taking them for two days and already notice a difference.

I guess what Im trying to get at is, is this test really necessary. I know that I going to have to follow the diet for the rest of my life after what happened after the summer, and since Ive already been gluten-free they probably wont be able to detect celiac disease. He wants to rule out Chrons disease and other GI diseases.

Im just afraid of this test, its so invasive.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Stef,

To me, it really isn't that invasive: its going through a natural opening. Its done under sedation, so chances are, you will wake up and go "When is it going to start!" Its a relatively quick procedure-about 10 minutes long or so.

I've had four endoscopies...and I am the world's biggest baby ;) They are honestly not bad at all. I had one done at age 22, 23, and 2 at 25.

You asked if it is worth it....I really think it depends on what you want to know. To some it would be worth it to rule things out or find something. It technically "could" find Celiac damage that is still there and might be causing some of your problems. I have seen other of your posts before but I don't remember if you had the bloodwork done and if so, the results? If you are looking for answers, yes, in my opinion, it is worth it, because it will either a) ease your mind or B) show you some of the problems. But, if you think you are doing better, then it might be worth cancelling/rescheduling for later on (if symptoms arise again)....I certainly don't see the need to do a procedure if you have no reason for it. Symptoms-yes. Get better---eh, not so much then ;)

Good luck, either way, and I hope you find answers/solutions to your indigestion.

Laura

Link to comment
Share on other sites
dlp252 Apprentice

I've had three this year alone and I agree, it really wasn't bad at all. I think they are required to tell you those things if it's happened to even one person, but really, hundreds of people have them done every day without problems. I remember nothing at all about any of mine, so the worst part for me was getting the IV in...and even that wasn't too bad. I remember being wheeled into the room, but after that, I just remember waking up and seeing my mom, lol.

Link to comment
Share on other sites
Rachel--24 Collaborator

The endoscopy was a breeze for me.....not scary at all. The worst part was when they put the IV in my arm...only because I'm a huge baby when it comes to needles.

I think it was one of the *least* invasive tests I've had. One of the best naps ever! :D

It was important for me to have it done. I had already been gluten-free for 6 months so we werent so much looking for Celiac. I feel better knowing that I had everything checked out though.

Link to comment
Share on other sites
Fiddle-Faddle Community Regular

Everybody has posted very good advice.

Mine, however, will be from the opposite perspective.

It IS an invasive procedure. Not as invasive as open-heart surger, but invasive nonetheless. Even twilight sedation is risky (that is what causes the risk of cardiac arrest). Yes, it's a breeze for most people--but so is gluten. Yes hundreds of people have had them with no bad effects--but there must have been MANY people who had problems, not just one. Just one, they can get away with writing off as having had other issues. For the medical community to admit that there is any risk at all takes a lot of people having very serious problems--just look at the vaccine issues! Heck, just look at gluten!

I have had two endoscopies. I chose not to have any anesthesia. They both went very smoothly, but with the second one, my vocal chords must have gotten scratched or bruised, and my singing voice (not a great one to start with, admittedly) was totally destroyed.

If you can find out what you are looking for without an endoscopy, then that's what your doctor ought to do: "But first, DO NO HARM." That shouldn't even be a bone of contention: there is NO reason to do an invasive procedure if you can find out the answers without it.

If you have exhausted all the non-invasive procedures and still have major questions, then an endoscopy might be a reasonable consideration. But it sounds to me like you are tweaking your diet and supplements, and that you are already on to something. If that fixes the problem, then it is YOUR decision (not your doctor's) how much you want to risk to corroborate what you already know.

A friend of mine says that his surgeon said, "Risks? Well, there won't be any for ME! This won't hurt ME a bit, ha ha!"

Link to comment
Share on other sites
pinktulip Apprentice

I had my endoscope this morning, and was put under ansthesia. It was my second one and other than a small sore throat that was gona almost as soon as I drank some water it was fine. I know one minute the doctor for ansthesia said i need to access your iv line the next thing I remember is my mom talking to the doctor about something.

I made the nurses laugh becuase as I was coming out of ansthesia I started singing if you're happy and you know it.

Link to comment
Share on other sites
super-sally888 Contributor

Hi,

I have had two endoscopies without anaesthesia and while it wasn't terribly comfortable it was pretty ok. While no procedure should be taken lightly, this one is pretty straightforward, particularly in the hands of an EXPERIENCED Dr. The Anaesthesia is probably more of a risk than the endoscopy....

Probably they want to do it to make sure there is nothing else going on.... like ulcers, etc.

Hope it all goes smoothly.

Sally

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



happygirl Collaborator

its important to note that there is a difference between sedation and anestethia. Most procedures are done under 'sedation'. There has to be a good reason to use general anesthethia. If so, you will have an MD anesetheiologist in the room. Sedation is shorter term and less risky, which is why it is used. So although most of us call it "anestheia," my guess is that most of it is sedation.

Out of my four, three were sedation, and so were my colonoscopies. My last one was general anesthia because I had lost so much weight and they needed to spend a lot of time on my endo/colonoscopy.

Link to comment
Share on other sites
jerseyangel Proficient

I had my endo. and colo. done on the same day under sedation. It went fine, and I woke up without even the sore throat! I don't remember a thing from shortly after the IV went in to when I woke up in recovery. I wouldn't hesitate if I needed another one.

Have you ruled out other food intolerances? I developed terrible reflux for the first time after going gluten-free. I was up in the middle of the night, not knowing if I was going to have to throw up or not. I went to the gastro, who told me to take Phazyme <_<

I also was working with allergist during this time and doing an elimination diet. He at first diagnosed me with bronchial spasms caused by reflux and put me on Prevacid. I only took it for 3 weeks, due to side effects. Anyway, after I eliminated legumes (!), the reflux went away--and has not returned! That's just my experience, but I never would have suspected that.

I wish you luck in getting to the bottom of this :)

Link to comment
Share on other sites
Guest cassidy

I've had 4 of them and they aren't that bad. I was very sick as a kid and so I get very nervous when I have to have things done even though they aren't that scary now as an adult. I always tell them I'm nervous and ask them to knock me out with lots of drugs. I will not let them start until I am feeling good and groggy. Once I get to that point I usually can't remember if they have done anything yet. For the last one I kept asking them when they were going to start and they kept telling me they were done and laughing because I asked the same question like 20 times.

If you are nervous I wouldn't do it without sedation because that isn't fun.

Link to comment
Share on other sites
rutland Enthusiast

Stef,

To me, it really isn't that invasive: its going through a natural opening. Its done under sedation, so chances are, you will wake up and go "When is it going to start!" Its a relatively quick procedure-about 10 minutes long or so.

I've had four endoscopies...and I am the world's biggest baby ;) They are honestly not bad at all. I had one done at age 22, 23, and 2 at 25.

You asked if it is worth it....I really think it depends on what you want to know. To some it would be worth it to rule things out or find something. It technically "could" find Celiac damage that is still there and might be causing some of your problems. I have seen other of your posts before but I don't remember if you had the bloodwork done and if so, the results? If you are looking for answers, yes, in my opinion, it is worth it, because it will either a) ease your mind or B) show you some of the problems. But, if you think you are doing better, then it might be worth cancelling/rescheduling for later on (if symptoms arise again)....I certainly don't see the need to do a procedure if you have no reason for it. Symptoms-yes. Get better---eh, not so much then ;)

Good luck, either way, and I hope you find answers/solutions to your indigestion.

Laura

[/quo

The blood test I got was done after I had been gluten-free for a few mos. and it came back negative. This recent GI doc I saw told me that this blood test was not as sensitive as the one that he ordered for me to get which is the tissue tranglutamase test (I think thats what its called) is the best one for accuracy. Anyway, I still dought it will come back positive. Although I have recently found out that Ive been acidentally glutening myself with wheat tainted supplements, so maybe it will.

Link to comment
Share on other sites
happygirl Collaborator

Stef,

Thanks for the background on that. How frustrating about your "process"...i.e., the blood tests that don't really mean anything because they were done while you were essentially gluten free. Yes, it is the tTG, but sensitive or not, its accuracy won't be applicable because in general, you are not eating gluten. That is, if you test positive on that one, you def have it...but if you test negative, it doesn't mean that you don't have it. But I'm sure you knew that already!!!

Make sure that if you ever switch doctors, that you clearly explain to them that you were gluten free at the time of testing. Many times they just look at records and don't take them in context (I learned from personal experience).

Good luck to you, no matter what road you take! I hope you find some answers.

Laura

Link to comment
Share on other sites
mom2jpb Newbie

I've had the procedure three times now, and I all that I remember is the nurse saying "now I'm putting the sedative in your I.V." then waking up feely relaxed. It doesn't hurt, honestly it doesn't. Fear of medical procedures is natural, but, believe me, this is painless. All the stuff about the complications can be said for virtually any procedure, including getting an I.V.! Relax, you will do great!

Link to comment
Share on other sites
pinktulip Apprentice
its important to note that there is a difference between sedation and anestethia. Most procedures are done under 'sedation'. There has to be a good reason to use general anesthethia. If so, you will have an MD anesetheiologist in the room. Sedation is shorter term and less risky, which is why it is used. So although most of us call it "anestheia," my guess is that most of it is sedation.

Out of my four, three were sedation, and so were my colonoscopies. My last one was general anesthia because I had lost so much weight and they needed to spend a lot of time on my endo/colonoscopy.

Mine was difinite ansthesia. THey tried once with just sedation and I worked myself up so much I was gagging and throwing up and they had to reschedule with ansthesia. But I'm also the type who gets gas to get my teeth cleaned atthe dentist.

Link to comment
Share on other sites
Nancym Enthusiast
A friend of mine says that his surgeon said, "Risks? Well, there won't be any for ME! This won't hurt ME a bit, ha ha!"

How about a risk of his insurance rates increasing? :P

Link to comment
Share on other sites
  • 2 years later...
Leiana Rookie
its important to note that there is a difference between sedation and anestethia. Most procedures are done under 'sedation'. There has to be a good reason to use general anesthethia. If so, you will have an MD anesetheiologist in the room. Sedation is shorter term and less risky, which is why it is used. So although most of us call it "anestheia," my guess is that most of it is sedation.

Out of my four, three were sedation, and so were my colonoscopies. My last one was general anesthia because I had lost so much weight and they needed to spend a lot of time on my endo/colonoscopy.

oh boy i am having one next week. still dont understand the difference in sedation and anestethia. dr. told me i would be knocked out....ii dont want to feel and know anything that is going on. who should i talk to to know which kind i would get before i even go in for this appt. i lost weight too...does it make a difference. it seems the anestheia if the one where you are totally out...right?

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - GardeningForHealth replied to GardeningForHealth's topic in Coping with Celiac Disease
      9

      10 years later, my celiac is progressing

    2. - GardeningForHealth replied to GardeningForHealth's topic in Coping with Celiac Disease
      9

      10 years later, my celiac is progressing

    3. - sc'Que? commented on Scott Adams's article in Summer 2024 Issue
      1

      Speculating on Benjamin Franklin's Health: Could He Have Had Celiac Disease?

    4. - TessaBaker replied to MiriamW's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      54

      Hair loss

    5. - Celiac16 replied to Sultana's topic in Related Issues & Disorders
      3

      Thiamine supplementation


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,991
    • Most Online (within 30 mins)
      7,748

    Becky54
    Newest Member
    Becky54
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • GardeningForHealth
      As a side note, it seems that medical science has evolved in the past 5-6 years regarding Celiac Disease, and I am now catching up. It seems that anything that disrupts the microbiome sufficiently enough can--in genetically susceptible individuals--lead to Celiac Disease. I have been reading now that antibiotics, excessive simple carbohydrates such as refined sugars and starches, the manner of birth such as C-section vs vaginal delivery, the diversity of one's diet, the presence of certain bacteria or viruses, can all contribute to microbiome dysbiosis, which can lead to Celiac. This is fascinating research.
    • GardeningForHealth
      I mostly eat healthy. My diet has varied over the past 10 years but mostly consisted of meals I cooked at home made from scratch. Ingredients I used over the years include (not in order): non-wheat grains such as teff, sorghum, millet, and eggs, butter, cheese, some milk, meat (poultry, red meat, but very little processed meat), gluten-free baked bread (mostly Canyon Bakehouse brand), vegetables, fruits, nuts, legumes, peanuts, chocolate (not in the past 6 months). However, the mistakes I made in my diet are that I consumed too much sugar and carbohydrates from gluten-free baked goods that I baked myself at home such as gluten-free dessert items, and also I ate pretty much the same exact meals over and over, so a great lack of diversity in what I ate. I got lazy. I think this messed up my microbiome. The meals I ate were mostly healthy though. I always made sure to eat vegetables and fruits on a daily basis.  I have checked for nutrient deficiencies over the years and I am sometimes low in Vitamin D. I started supplementing it after that. What concerns me is the progressive nature of the food intolerances, which indicates the gut is not healing and has been leaking all along. 
    • TessaBaker
      It sounds like you're dealing with a complex situation, and I can understand how frustrating it must be not to have a clear answer. Gut health can indeed play a significant role in various aspects of our well-being, including hair health.
    • Celiac16
      I have found similar benefits from thiamine. I was diagnosed with celiac at 16 and never really recovered despite strict gluten and dairy free diet and no detectable antibodies on checkup bloodworks. I’ve tried stopping the b1 but start to feel bad again- I wanted my doctors to do more extensive testing for the different thiamine transporters and enzymes which would be a better indication if I was deficient or dependent on it but everyone dismisses it (there are know genetic mutations where you need to take it daily for life). I have looked into Thiamine Responsive Megablast Anemia and I have a lot of the more mild symptoms of the disease that manifest when thiamine isn’t given to the patient such as optic neuritis… I just find the parallels interesting. i think that celiacs could be a side issue of inflammation that resulted from vitamin deficiencies. I was eating a lot of sugar leading up to my diagnosis and since eating gluten free didn’t make me feel much better, I’m wondering if this was more the underlying issue (sugar heavily depletes b1). I usually take 1.5g thiamine a day.
    • Fluka66
      Thank you for your welcome and reply.  Yes I've been carefully reading labels looking for everything in bold and have been amazed by what I have seen. However Heinz tomato and basil soup is wheat free so I m thinking I already have ulcers?  The acid could be causing the pain . My pain always starts in one place then follows the same route through me . GP confirmed that is the route of our digestive system.  So much pain from stabbing to tearing. If I throw in milk with lactose it's horrific.  Many years of it now, won't go into details but been seeing a consultant for a supposedly different problem . Wondering what damage has been done over the years. Many thanks for your reply. Wishing you the very best.    
×
×
  • Create New...