Did Everyone Have A Biopsy To Determine Celiac?

[michelle5578]

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???

[psawyer]

I had the biopsy done in 2000. At that time, the blood tests were new, and were not yet recognized in Canada.

Today, many doctors still consider the blood test as a screening tool and will only diagnose celiac disease if there is a positive result on a biopsy. Other doctors understand that if your blood has gluten antibodies, then you have a problem with gluten even if your villi have not yet sustained enough damage to register on a biopsy.

[zus888]

I did, but my diagnosis was backwards: I had the biopsy done first as part of monitoring of another disease. Just so happened to find this one. Not sure about the statistics on your question. I know a lot of people don't have a positive biopsy or biopsy at all, but don't know if it's the majority or not.

[kareng]

I had an endo. MY blood work was soooo positive, it maxed out the highest values on the test results. I chose an endo to see how bad & paired it with a colonscopy to just check it all out.

[Googles]

My doctor did a endoscopy and colonoscopy to make sure there were no other problems (I have a family history of GI problems.) Had I not needed it for that I don't think my doctor would have done a biopsy, would have just taken the test results as proof.

[Roda]

I had it done in 2008 and a colonoscopy 2 months later. I had a repeat scope done in 2010 because of new issues and to also check to see how things looked.

[michelle5578]

Thanks! I guess I just want to make sure it is necessary before I go through the procedure, but from what I read it looks like I probably should.

[CarolinaKip]

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???

Even though my blood levels were very positive for Celiac, my DR wanted the Endo to DX me Celiac. I put it off for a month because of work. Looking back, I would never do that again! I wished my DR would have educated me more on gluten and what it was actually doing to my body. I'm glad I had the Endo to see how bad my damage is. There are several here that did not have it done. If you do have it, have it done asap!

[ravenwoodglass]

Since my doctor had me do an elimination then referred me to the GI doctor for an endo my GI doctor had me do a second challenge. The second challenge made me extremely ill with bad GI bleeding so I was diagnosed at that point. I did have an endo to check and make sure I was fully healed a couple of years later.

If you have positive blood work it is up to you whether you want to do an endo or not. Some doctors are now diagnosing with positive bloods since the endo has a risk of false negatives anyway.

[MadScientistSA]

I don't have Celiac but my not-even-three-year-old son does. We did a blood test and his pediatrician "diagnosed" it. We went to a specialist a month ago, and he wants to do a biopsy.

I'm going to wait on it. He has the blood test and is much better off gluten, so I don't see the point in putting a baby through such an invasive test. If he requests it someday, or we need a more "official" diagnosis, I will certainly consider it. But the headache we'll go through by putting him back on gluten long enough for a biopsy to even work, makes it seem unnecessary right now.

But you're not a baby. If I were in your shoes though, I probably wouldn't do it to myself either, unless I was still on a gluten-full diet where it wouldn't make much difference anyway.

[HS7474]

I did not have an endo. My blood test results were so positive that my doctor said an endoscopy wasn't necessary. I wish I had had one, though, just because so many people still use it as a final diagnosis. I had one after being gluten-free since I've still had some issues and it didn't show any signs of celiac disease. I would probably do another one, after eating gluten for a few weeks, but I can't afford the copay at the moment.

[SaraKat]

I did, my Dr told me it is the gold standard for diagnosis (even after the very positive blood test). I really didn't want to have it done, but it ended up not being a big deal at all.

[Poppi]

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.

[sa1937]

I did because I knew my adult daughter had a problem with gluten and I wanted her to take it seriously. She had a highly positive DGP celiac panel the end of Aug. 2010 and went gluten-free skipping the endoscopy.

[angel9165]

I did, but my diagnosis was backwards: I had the biopsy done first as part of monitoring of another disease. Just so happened to find this one. Not sure about the statistics on your question. I know a lot of people don't have a positive biopsy or biopsy at all, but don't know if it's the majority or not.

Same here...biopsy was done to discover reason for anemia.

[oceangirl]

Hi!

Been absent from this board for a long while but ...

I did have the endo and colonoscopy after positive bloodwork. I had stopped "obvious" gluten for 4 months prior to the scheduled biopsy so it returned "inconclusive". The gastro (5th in a line of gastro specialists since I was 11 years old over a span of 35 years to suggest having a celiac panel so...better than most.....) reported that I was "fine to go on with gluten") Needless to say, I did not "go on with gluten", and know from 7 years gluten-free high sensitivity that I should have just trusted the initial blood test.

At the time of diagnosis I had lost over 12 pounds I didn't need to lose, was in intense pain and had over 26 specific symptoms, all of which, with the long learning curve of discovering hidden gluten and high sensitivity, have disappeared. Of course, being grossly sensitiv and even making almost all of my food myself from whole foods, I get "glutened" (or the thing that acts exactly like gluten...) about every three months. But I predominantly feel well.

I tell people with gut issues (and other issues as well): take OBVIOUS gluten out of your diet for one week. If you see a big difference; you probably would be better off without gluten; if not, that's probably not your problem.

take care,

lisa

[Korwyn]

I did not. I was diagnosed after I got my Enterolab results back and the dramatic turnaround in my health and various multi-year issues within weeks of going gluten-free. I actually went gluten-free first, then got the Enterolab stool tests done about a week later. So by the time I got my lab work back my Dr. had already seen a huge improvement in my health and combined with the test results she made the diagnosis.

[sb2178]

I did. It was due to a negative batch of bloods combined with high clinical suspicion. The biopsy was negative, but a sensible doc ran a second round of bloodwork which validified the theory. Follow-up genetics were positive as was response to elimination and challenge. Family results pending (literally, finally got relatives to have blood tests).

[Monklady123]

Thanks! I guess I just want to make sure it is necessary before I go through the procedure, but from what I read it looks like I probably should.

I haven't read all the replies yet so maybe someone else said what I think. But... I don't think you "probably should." It depends on what stage of being gluten free you are in. I had my blood test but then went gluten free on my own. The doctor never mentioned anything about an endoscopy at that point and I was curious to try the gluten free diet since she seemed so certain that this was the problem. It was. I felt SO good. Then I went to the GI doc for the pre-colonoscopy appointment and he mentioned the endoscopy but said I'd have to go back to eating gluten for THREE months! Um no. I can live -- very well, in fact -- without those test results. I have no need to have it because I am 100% sure that I cannot eat gluten.

So, I wouldn't torture yourself for that test. Now, if you haven't gone gluten free yet that's another story. In that case for me it would depend on how long I had to wait for the test.

[hsmomof6]

I was just diagnosed by my PCP based on my blood test results and symptoms. The NP at the GI office told me I didn't have Celiac, but my PCP (who has Celiac herself) took one look at my blood test and said, "you have Celiac." She said I didn't need to have an endoscopy unless I wanted one. She didn't feel the need to put me through going back on gluten (I've been gluten-free for about 3 weeks now) just to have an endoscopy.

[luvs2eat]

My blood work was so highly positive that my doc said a biopsy wasn't necessary. I ended up having an endoscopy a few years later for GERD symptoms and biopsy confirmed the blood work.

[sa1937]

I was just diagnosed by my PCP based on my blood test results and symptoms. The NP at the GI office told me I didn't have Celiac, but my PCP (who has Celiac herself) took one look at my blood test and said, "you have Celiac." She said I didn't need to have an endoscopy unless I wanted one. She didn't feel the need to put me through going back on gluten (I've been gluten-free for about 3 weeks now) just to have an endoscopy.

Smart doctor! Thankfully you have one who gets it since she also has celiac!!!

[NateJ]

I've had 3 Endoscopies and 2 Colonoscopies in the span of about 4 years.

All the Drs said I was negative but my symptoms became progressively worse until they took my gall bladder out in Dec. '10

I then ordered my pathology slides be sent to a new GI at Washington U med center in StL and she said after

reviewing them that it was obvious to any first year med student that I have Celiac and GERD and she couldn't understand

why no one diagnosed be previously.

I wish I would have found this Dr. before my GB was removed because now i have Post Syndrome and it pretty much

controls my life now. Hopefully in a year or two it will go away, but my GI said sometimes it never does.

[Coolclimates]

yes, I had a biopsy. I have to get a repeat one in 2 weeks because my antibodies are still very high after being on the gluten-free diet for 1 1/2 years

[Macbre]

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???

I didn't have the endo or colonoscopy because my doctor wanted to schedule it 4 weeks after he had me go gluten free. I had read that the test could be negative if you didn't have it done right away and after a week of going gluten free I was feeling so much better that I decided not to have it done. It didn't help that I was going to have to pay out of pocket for it because I'm not at the age that my insurance covers it. I'm just hoping that I made the right decision because I'm not willing to start eating gluten again just to have the test done.