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Did Everyone Have A Biopsy To Determine Celiac?

michelle5578

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beebs Enthusiast
beebs
Posted

I didn't but wish I had. I am now at the point where my symptoms are too severe for a gluten challenge but everyone (GP, GI) is sure its celiac but they can't give me an official diagnosis. Wish I had just done it in the beginning when I was supposed to, life got in the way and I thought I'll do it later down the track. I was kind of looking forward the challenge truth be told...all that gluten! haha!

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concernedmamma Explorer
concernedmamma
Posted

Nice to read this! We have a strong family history of Celiac, so when my blood work came back strongly positive, I assumed I would skip the biopsy/scope. The GI strongly encouraged it though, and I realized that 'I' need the positive scope to prove to myself that Gluten is doing damage to my body. I have felt fine, but did the blood work since we have Celiac in the family. Scope is booked for Nov 15

I am extremely nervous though! Those who had it done- were you asleep? I don't want to be awake or even just a bit sleepy when they put a tube down my throat!

DerpTyler Newbie
DerpTyler
Posted

Nice to read this! We have a strong family history of Celiac, so when my blood work came back strongly positive, I assumed I would skip the biopsy/scope. The GI strongly encouraged it though, and I realized that 'I' need the positive scope to prove to myself that Gluten is doing damage to my body. I have felt fine, but did the blood work since we have Celiac in the family. Scope is booked for Nov 15

I am extremely nervous though! Those who had it done- were you asleep? I don't want to be awake or even just a bit sleepy when they put a tube down my throat!

If you an adult they will most likely have you awake, I hear they numb your throat or something. I was young when I got mine so I was put to sleep.

mushroom Proficient
mushroom
Posted

lThey give you a strong sedative which contains a "forgetting" drug so you won't remember anything of the experience. :)

sa1937 Community Regular
sa1937
Posted

I am extremely nervous though! Those who had it done- were you asleep? I don't want to be awake or even just a bit sleepy when they put a tube down my throat!

I was very nervous, too, and had breezed through life avoiding invasive procedures. But my greatest fear turned out to be fear itself. I didn't feel a thing although I was loopy afterwards...nor do I remember anything about the procedure. I didn't even have a sore throat afterwards. It's a short procedure so it's over before you know it. I was really hungry afterwards and bloated to the point that I couldn't button my jeans.

I'm sure you'll do fine. Go home and have a light lunch (I had made a pot of chicken and rice soup the day before) and then have a nap. :)

ravenwoodglass Mentor
ravenwoodglass
Posted

Nice to read this! We have a strong family history of Celiac, so when my blood work came back strongly positive, I assumed I would skip the biopsy/scope. The GI strongly encouraged it though, and I realized that 'I' need the positive scope to prove to myself that Gluten is doing damage to my body. I have felt fine, but did the blood work since we have Celiac in the family. Scope is booked for Nov 15

I am extremely nervous though! Those who had it done- were you asleep? I don't want to be awake or even just a bit sleepy when they put a tube down my throat!

They ususally put people in a twilight sleep and you shouldn't remember any of the procedure. Make sure you don't go gluten free until the scope is done. Do keep in mind that even if your scope is negative that with positive blood tests you do need the diet. It isn't just the gut that celiac attacks.

sariesue Explorer
sariesue
Posted

Make sure that you don't plan any activities the day of your endoscopy. I planned on going to my ballet class that was 6 hours after my procedure thinking that I didn't need sleep after my tonsils were out I wouldn't this time. I woke up an hour after class started after a 7 hour nap. Also, get valet parking if available or have the car brought to the exit. My husband had me walk down stairs to get to the car. It was a very odd experience.

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Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

I was originally getting my endoscopy for 24/7 GERD that was not responding to any medications. I had done the barium swallow prior which came back completely normal. During the endo the doc found a small hiatal hernia and inflammation in the small intestine, which he biopsied. After the biopsy came back with villi damage, he made me take the blood test and the numbers were ridiculously high.

So initial diagnosis was GERD w/ hernia and it turned into a diagnosis of coeliac soon after (which, for a time, cleared up the GERD).

rainer83 Newbie
rainer83
Posted

I didn't have a biopsy. I was lucky to be working with a Homeopath with celiac, and she began noticing how sick I was. I had gone to see my family Dr. about it, and she told me to go on an elimination diet, which I had been, but not feeling better. I was cut out the most common allergens I knew about, but the one I didn't was gluten. So the homeopath gets me to list all my symptoms, absolutely everything, and I tell her the stuff I had cut out, and then she suggested gluten, and I had no idea what she was talking about, but I did it anyway. About a month later, I was back to normal. In fact, I never felt so good in my whole life. I went back to eating gluten thinking it was temporary... after 2 months of going back to my personal hell, I realized that gluten free was the only way I was gonna live, and I haven't looked back. All the symptoms I had were matching everything that was listed for celiac disease, and they suddenly go away after being gluten free? I haven't even gotten any mouth soars since I went gluten free, I used to get them 2-3 times a month. I don't care about the diagnosis.

Leper Messiah Apprentice
Leper Messiah
Posted

I don't have a blood test or a biopsy. I went gluten free for a few weeks to see how I felt and there was such a drastic and sudden change in my health that people I barely knew were stopping me to comment on how amazing I looked. My husband and I thought maybe it would be good to start eating gluten again so I could have the test. I had one small serving of a gluten food as an experiment on Monday and I'm still sick 72 hours later. There is no way I am going to make myself extremely ill for months so I can have a doctor tell me what my body has already made crystal clear to me.

The only question I will have to learn to live with is whether I am gluten intolerant or truly celiac. I can live with that uncertainty since the treatment is the same either way.

Exactly the same although I've had a few blood tests which all came back negative, a few because I was so sure it was celiac. However 2-3 weeks of gluten free and I'm back to normal Sam so that's as good a diagnosis as I need, even though it looks like I have an intolerance as opposed to celiac I still tell everyone I have celiac, it's much easier that way.

If you get the opportunity to have the colonoscopy I would certainly do it though, any information is good information as far as I'm concerned, make sure you get a copy of the results for future reference, and from the peeps responses it doesn't sound too traumatic at all a procedure.

Kimbalou Enthusiast
Kimbalou
Posted

I was just curious to see if everyone has had the biopsy to determine they indeed have Celiac. My blood work just came back positive and now I am waiting to see if doctor wants to do the biopsy...I just want to know if that is necessary???

Yes, I had one. I think it's necessary because Celiac is a life-long disease and so is the diet. I just wanted to make sure I had it...and I also had my kids tested.

RVluvin Apprentice
RVluvin
Posted

After the blood work came back positive, I went gluten free the day after the biopse, but I knew I was celiac with in 3 days, even before the biopse results came back. I haven't been back for the followup, but I'm interested in the amount of damage my small intestent has endured. The confirmation is nice to have as well.

Chad Sines Rising Star
Chad Sines
Posted

I saw no point. Docs never tested for it before when I was scoped. Five years after a GI casually mentioned it, it hit me. I cut out gluten and got better. Why go back and spend a lot of $$, have to regluten, have that diagnosis on my medical record, and give them the glory of fixing me.

The only treatment is no gluten in your diet. If there were med options, then the doc would make sense. Since there is not, I see no point.

Googles Community Regular
Googles
Posted

I know everyone is saying that you will be given medicine and forget the procedure, but that wasn't the case for me. I remember both the endoscopy and colonoscopy that I got. They did both because there was a family history of Crohn's and so they wanted to make sure that everything else was okay. Everyone told me before going in that my anxiety was unneeded because I would forget everything anyway. But me being me, I remember the whole thing. Luckily it wasn't as bad as I expected.

mushroom Proficient
mushroom
Posted

I know everyone is saying that you will be given medicine and forget the procedure, but that wasn't the case for me. I remember both the endoscopy and colonoscopy that I got. They did both because there was a family history of Crohn's and so they wanted to make sure that everything else was okay. Everyone told me before going in that my anxiety was unneeded because I would forget everything anyway. But me being me, I remember the whole thing. Luckily it wasn't as bad as I expected.

If you ever have to have a similar procedure, do be sure to tell them of your prior experience and that you will need additional medication. They give the average amount that works for most people, but some people require more sedation.

granolagal Apprentice
granolagal
Posted

I didn't. I was just diagnosed 3 weeks ago via a blood test. I actually WANTED a biopsy to confirm, but my doctor won't refer me. She said that based on the positive blood test (altough my ttg was only 79) in combination with my other symptoms, she said it was enough for her to be "official". I started Gluten-Free from that day, so at this point I won't be able to get a biopsy unless I go back on gluten. Which I'm terrified to do. I'm 3 weeks into being Gluten-Free and can't say I feel any better than I did 3 weeks ago...so I'm worried. :(

RVluvin Apprentice
RVluvin
Posted

If you ever have to have a similar procedure, do be sure to tell them of your prior experience and that you will need additional medication. They give the average amount that works for most people, but some people require more sedation.

I did exactly that. My first colonoscopy 8 years ago was not a plesent experiance. I recently had my second, and told them that my 1st was very unplesent. They juiced me up good, no complaints. I'll be sure and mention it in 3yrs when I have it done again.

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