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michelle5578

Did Everyone Have A Biopsy To Determine Celiac?

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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!


HLA DQ8, gluten-free since January 2011

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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!


Kim

Son1-lifelong diarrhea and generally unwell. Diagnosed March 2010 with positive blood work end endoscopy-finally feeling better August 2011

Son2-Diagnosed August2011 Bloodwork only.

Me-Positive bloodwork October 2011, Endoscopy booked November 15th.

Daughter1-no symptoms, negative bloodwork twice

Daugher 2- no symptoms, no bloodwork yet.

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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.

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


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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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. :)


Sylvia

Positive Celiac Blood Panel - Dec., 2009

Endoscopy with Positive Biopsy - April 9, 2010

Gluten Free - April 9, 2010

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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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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).


gluten-free 25 Feb 2011
soy-free 30 March 2011

dairy-free 30 August 2011 (roughly)

25 yrs old
diagnosed Celiac through biopsy and blood test (WAY positive) as of 25 Feb 2011

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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.


Diagnosed by a Naturopath by an elimination diet, gluten free 2 years, finally able to live again after years of suffering.

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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.


Knowledge is power; arm yourself - Propagandhi

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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.


11/19/10 diagnosed with Celiac disease after positive blood test

12/14/10 Biopsy positive for Celiac disease

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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.

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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.

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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.

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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.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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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. :(

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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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