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Diagnoised Celiac But With No Biopsy


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#1 weebitts36

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Posted 01 January 2004 - 01:24 PM

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I recently was diagnoised with celiac disease 2 weeks ago. My doctor only did so through several blood tests. Everything I read refers to a endoscopy for a biopsy to confirm this diagnosis. My doctor has me scheduled for a colonoscopy. Now my only syptmoms were constipation, extreme bloating, and occassional bloody diahera. All my friends tell me I need a second opinion before I make such a dramitic life change of a glutten free diet. Amyone have any input abiut this?
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#2 visions20

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Posted 01 January 2004 - 02:03 PM

Dear Weebit36 , I was diagnosed with celiac about one year ago. I am a senior citizen and have enjoyed a healthy life. I go routinely for an annual physical each spring and the only thing different this time was I was slightly anemic and iron difficient. I had a colonoscopy and a endoscoptic exam of the stomach.When the doctor saw that there were no cilia in the duodenum he took a biopsy which confirmed ciliac. The blood tests afterwould also confirmen it.I had no symptoms.I contacted the celiac asso and researched it on line.I went on a glutten free diet and stuck to it and the biopsy a year later showed regrowth of the celia and I am no longer anemic or iron deficient. i have never had any distress or any other symptoms. I suspect I could eat glutten with no problems as I have done in the past. I know what it could lead too so I just remain glutted free. It is really not bad once you set your mind to it.

As to your question the absolute positive diagnosis is a boiopsy. Try to find a doctor who is knowledgeable in celiac. I called the local celiac society and asked them for a recommendation of a celiac knowledgable gastroenterologist . They were very helpful. I was shocked when I found out I had it as I had absolutely no outward symptoms. I was also glad that I cought it before I developed bad problems. I hope I have been helpful to you.Good luck.
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#3 Lily

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Posted 02 January 2004 - 06:03 AM

Weebits36,
I saw a specialist for Celiac and he did the endoscopy with a biopsy. It was painless but confirmed the diagnosis. A colonoscopy wasn't suggested. I would listen to your body instead of your friends. Yes, it is a huge change in lifestyle, however, what's the harm in trying the diet for a short period to see if you feel better?
I wish you much luck.
Lily
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#4 visions20

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Posted 02 January 2004 - 10:07 AM

Lilly
Celiac is serious business. I have no symptoms but stay on the diet.It is a hereditary condition and can lead to a very big list of major problems including cancer of the colon.My feelings is not to take a chance as I like life and like being healthy. Please contact the Celiac Society of America and find out about the disease. Good luck.

Visions20
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#5 Guest_LisaB_*

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Posted 02 January 2004 - 03:50 PM

Visions20,

I think Lily is saying the opposite of what your thinking she said. I see her point to be, that there is no harm in dealing with your life in such a way as to assume you have Celiac. If your friends are telling you that you have to have a diagnosis before trying the gluten-free diet because it is such a huge life change, they are not realizing that the diet isn't that hard and it is better to do the diet than not. Make sense? :unsure:

I'm probably about as clear as mud here....Lily, where are you...

Lisa
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#6 Lily

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Posted 03 January 2004 - 05:21 AM

Hi Visions20,

Yes, I know celiac is a serious business. I'm 35 and been sick all my life. It was my nutritionist who suggested 6 months ago that I go gluten free before I had an actual diagnosis. I didn't need the dignosis to tell me that she was right. LisaB is right about that I meant to say "assume you have celiac", no matter what your friends say. (I know what I mean, but don't always say it like I want.....I've still got that foggy brain thing going on :( ).
I too like life :rolleyes: , and my biggest concern has been about the huge cancer risk that celiacs have. They say it takes decades to develop, but I've had symptoms since I was a baby and I've got 3 and 1/2 decades under my belt.

I have researched enough on the subject this past year to write my own book so I do know about the disease.

I was trying to offer some support about Weebits and his/her friends, I don't think they understand us unless they've been through it on their own.

Weebits, those biopsies seem to be fairly unreliable. Just listen to what your body is telling you, try the diet and see if you notice a difference. If you feel the need for a 2nd opinion, at least now you have an idea on what to have them test for. Because I had a kidney stone in the spring, all they wanted to run tests for intially (4 months) was kidney function testing. It's a long and frustrating road, but I hope you find the support you need here. It has helped me tremendously.

I'm truly sorry if I didn't communicate myself as well as I should have and caused some misunderstandings.

Here's to better health!

Lily
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#7 granny

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Posted 07 January 2004 - 08:55 PM

Weebits36,
I saw a specialist for Celiac and he did the endoscopy with a biopsy. It was painless but confirmed the diagnosis. A colonoscopy wasn't suggested. I would listen to your body instead of your friends. Yes, it is a huge change in lifestyle, however, what's the harm in trying the diet for a short period to see if you feel better?
I wish you much luck.
Lily

Lily,
Are you saying that your doctor only did the endoscopy and was able to do the biopsy that way?? I thought that my doctor had indicated that he could do that but hadn't heard anyone else refer to the biopsy being done that way so wasn't sure. When my doctor tried to do the biopsy when doing the colonoscopy, he wasn't able to get into the small intestions because of a previous surgery so the effert was a waste.

Thanks for any help. Granny
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#8 Guest_jhmom_*

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Posted 08 January 2004 - 08:15 AM

From my understanding a colonoscopy is to view the large intestines and "some" of the small. The doctors can take a biopsy during a colonoscopy, mine did but my colon was "twisted" and he wanted to make sure I did not have colon cancer but I have never heard of Celiac Disease being diagnosed this way.

An endoscopy is where they put tube down your throat and can take a biopsy of your small intestines to check for damaged villi.
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#9 Susan123

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Posted 08 January 2004 - 09:09 AM

I have had a couple of colonoscopies in my life as well as an endoscopy. My impression from my specialist is that the biospy is taken in the small intestine because that is where the damage is most prevalent. They are able to see the nature of the villi to see if damage has set in. They often recommend a colonoscopy to rule out other intestinal damage (IE Chrons, colitis etc) or damage from non-treated Celiac. In order words it gives you a full picture of what is going on. From my experience with the Colonscopy it very rarely gets to the point of the small intestine hence the endoscopy is needed. My suggestion is to have them both done at the same time like I did. If you have to go thru the prep you might as well do it all at once. Also, during an endoscopy they will put you under so you wake up and don't even know it happened. The only thing you will probably experience afterwards is a mild sore throat (from the tube- endoscopy) and an active stomach sound from the gas they use to illuminate your colon during the colonoscopy.
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#10 Susan123

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Posted 08 January 2004 - 09:11 AM

to clarify above: The best way to diagnose Celiac is by taking several biopsies in the small intestine. This is done with an Endoscopy. The colonscopy gives the full picture.
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#11 granny

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Posted 11 January 2004 - 10:02 PM

Thanks for the replies. It's wonderful to have a place to ask questions of people who have more experience with these things. I had gotten the wrong idea about this. My doc. had tried to do the endoscopy but had not put me to sleep and I couldn't swallow the tube so he was only able to do the colonoscopy. I really wish he had put me under because now I have to do it again and still have no answers.
Granny
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#12 Guest_shar4_*

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Posted 12 January 2004 - 09:08 AM

I had bot colonoscopy and endoscopy done at the same time. The only problem was that I was AWAKE for both. :angry: Trust me, not the way that I wanted to do it, but anyway. colonoscopy was fine but endoscopy was a mess. Doctor stated that everywhere that she looked was "oozing" and inflamed. I have to have a repeat endo, in a few months to see if things are looking somewhat better.

I certainly feel better, and remain optomistic that things will look better too.

Thanks for all the info.

Sharon
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#13 eRinLuCyO1

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Posted 15 January 2004 - 04:49 PM

I recently was diagnosed with celiac disease in December, however I had a negative endoscopy. Over the course of several months my GI doctor gave me the blood test for celiac disease twice, and both times it came back conclusively positive. My doctor told me that even though the endoscopy came back with a negative biopsy she was sure that I had celiac disease. My mom doesn't know whether she wants to trust this or not so were sending the reports to another GI, however personally I feel that I probably do have it; I've had a lot of the symptoms for 2 years now. Anyone have any input? Thanks.
Erin
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#14 bigapplekathleen

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Posted 15 January 2004 - 07:52 PM

HI there,
I am also a diagnosed celiac who only had blood tests and no colonoscopy or endoscopy/biopsy. I have responded so well to the gluten-free diet, though! When I have gluten now, I get horribly ill within an hour. My lief has been dramatically changed by following the gluten-free diet.

however, I will probably have to get the biopsy done soon. That will mean a month of eating gluten, which i am not sure I can or want to endure. At this point, i don't want to do annything that will jeopardize my health again.

If I had it to do over again, I would have had all the right work done before I started the gluten-free diet. Hindsight is always 20/20, right!?

kathleen
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#15 aldociao

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Posted 15 January 2004 - 09:13 PM

Kathleen,

I'm confused. Please unconfuse me--I'm sure I'm missing something--the elusive obvious, I guess. I'm a self-diagnosed celiac disease since about 7 weeks ago, and I don't understand why so many on this board, like you, feel the need to have your obvious condition medically confirmed. Why put yourself through the pain of a "Gluten Challenge," as I think they call it, just to confirm what you already know?I can understand if you have doubts, but in your case--having had your "good"
gluten-free exeriences and the blood tests--and apparently in many others, it's as plain as feeling good compared to feeling rotten. And from what I've learned here, all the tests, including supposedly the best one, biopsy, might not accurately reflect whether you do have celiac disease given the often patchy inflammation of the intestines.

Frankly, I don't get it. I thought, well maybe it's for insurance coverage, but since this is a self-managed condition--after the testing is over--getting a medical diagnosis for insurance reasons seems not to apply here. But then, I don't know, are the tests expensive? If so, that is even more reason, as I look at it, not to have them done, especially when you know what the results will be, or should be. And if the results are negative, let's say, would you go off being gluten-free? I don't think you would, no matter what the doctors or the tests are telling you, knowing that your body is sending you a very clear message to stay away from gluten. What am I not getting? --Aldo
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