A Word About Neg Biopseis...

[VydorScope]

This post may sound picky, but in the day and age we live in, everyone realy kind of needs to understand this. A bisopy for celiac disease can never be negative, and can never disprove celiac disease. Let me explain...

Do you have some dice? Pick up one, assuming its a fiar 6 sided die, role it couple of times. Your goal is to get as many 1 or 2's as you can. Roll it say 5 times. I got 4,3,6,3,5 . In 5 rolls I did not score a single 1 or a 2. If I roll enough times I should evenutally get a 1 or a 2, but theres no mathmaticly way to define enough, with precison. Took me THREE sets of 5 rolls to get my first 1 or 2, it was a one actully. So what does that have to do with celiac disease? Easy...

When they do a bisopy for celiac disease they take a random part of your small intestin and check it to see if there is evidence. Most docs will take 4 or 5 samples. If say 1/3rd of your instenice is damaged, then finding damage is the same as rolling a 1 or a 2 on a 6 sided die. The more rolls you make, the better your chances of getting a 1 or a 2, but you literly could roll a million times and never get a 1 or a 2, or you might roll 5 1's in a row. In my example, it would take THREE endoscopy's to diag celiac disease successfully.

You see, the english term "negative" in this use REALY means "not postive". That sounds picky, but its an important fact.

So what does that mean for any of us? Just this, the biopsy is only conclusive IF IT IS POSTIVE. Anything else is not conclusive, just merely non-postive.

NOTE: I am not a doctor, nor do I play one on the internet, but one of my degrees is in statisitics, so I do have a better then average understanding of testing methodogly, but claim no medical expertise of any kind.

[kvogt]

I read an article recently, on this site I believe, of a study that discussed the better locations to take the biopsy. Presumeably, the odds of a correct diagnose will be improved by a more intelligent selection of the sample.

[VydorScope]

I read an article recently, on this site I believe, of a study that discussed the better locations to take the biopsy. Presumeably, the odds of a correct diagnose will be improved by a more intelligent selection of the sample.

yes, the mroe experence docotr would tend to have better odds... but that does not change the point I was making, just effects the odds a little.

[steve-o]

I was sooooo mad when I got the pathology report from my biopsy, and I saw that the doctor only took one tissue sample. Big surprise....I was "negative" for celiac sprue.

You don't need to be a rocket scientist to understand sampling error. I asked the doc why he only took one sample, and he basically threw down the "I'm the doctor, don't question me" card.

To add insult to injury, I wound up having to pay almost $500 out of pocket for my endoscopy, because of my insurance deductible.

Anyhow, sorry for the rant....

I've read some articles that say the Jejunum is the part of the small intestine which is most often damaged...yet doctors always take tissue samples from the duodenum (mainly because a jejunal biopsy is more difficult to obtain).

[VydorScope]

You don't need to be a rocket scientist to understand sampling error. I asked the doc why he only took one sample, and he basically threw down the "I'm the doctor, don't question me" card.

Thats the reason for this post, in my experence most ppl will not question the doctor. Sounds like your doctor is not used to being questioned... and thats fairly true of most doctors. I am hoping my little dice illustration will help ppl realize what thier so called "negative" biposy realy means. Even if it jsut gets ppl askign questions of thier doctor that be great.

[LKelly8]

I lucked out, my doc took six biopsies and one came back positive for mild atrophy. It's like playing lotto, you may get one or two numbers or none at all.

Besides, it's an autoimmune disease! They change; they flare up then die back down, go silent, go into remission - then jump back to life again. I don't know how doctors think they can diagnose celiac based solely on intestinal damage. It'd be like waiting till there was significant joint damage to diagnose rheumatoid arthritis.

[mytummyhurts]

To add insult to injury, I wound up having to pay almost $500 out of pocket for my endoscopy, because of my insurance deductible.

That would make me so mad! Their not like businesses either where you can threaten them with something. I had to pay $600 for mine, but at least they found the damage so I don't feel like it was for nothing. My sister went into the doctor specifically to have the blood test done for celiac and they ran the wrong tests. Now she doesn't have insurance but she can't really force them to pay for the tests, because they don't care. It's not like they need her business.

[gf4life]

Vincent, I agree with your statistical analysis of the endoscopy. Statistically you are going to get a false negative more often than a true negative or a positive.

I am one of those who's doctor only took 3 samples in the duodenum and of course it came back negative. There is a way to look at the tissue sample on a cellular level to see if the intraepithelial lymphocytes are elevated, which would indicate the early changes of celiac disease, but very few doctors (or labs) do this. I questioned my doctor on my results, and she basically refuses to believe I have celiac disease. My first GI did NO testing, just told me I had IBS when I was 16. When I went searching for aq diagnosis of celiac disease the GI I went to told me I "couldn't possibly have that", because I was overweight. When he finally did the endoscopy he didn't take ANY samples. Oh well. My insurance didn't like having to pay twice, but they had to since the first doctor wasn't looking for celiac disease, and the second one was, but not hard enough...

God bless,

Mariann

[jaxonweb]

I am sceduled to have an endoscopy in September because my doctor thinks I have celiac disease. If the results come back negative, how can I know for sure? Blood test? Try gluten free diet?

[Carriefaith]

jaxonweb, I would ask for them to take 5+ biopsies. They should hopefully find damage with that many if you have celiac disease. You could also ask for the celiac blood test panel... Just make sure you are eating gluten before your tests or you could get false negative results.

[Guest nini]

In my opinion, how you respond to the gluten free diet is one of the best indicators around. There are Dr.s willing to dx based solely on positive dietary response.

[celiac3270]

I am sceduled to have an endoscopy in September because my doctor thinks I have celiac disease. If the results come back negative, how can I know for sure? Blood test? Try gluten free diet?

September? Why so far away? Some blood tests can pretty much 100% tell you--and in that case it's likely that the biopsies just msised the damaged locations. A positive reaction to the gluten-free diet won't tell you that you have it, but it means that you probably have some problem with it, be it celiac, an allergy, or something else.

[jaxonweb]

Unfortunately, September 2 was the earliest appointment they had available. He wants to do the endoscopy because if positive it will show how bad the damage is (supposedly bad cases can become cancerous), or if negative he can see what else might be the problem.

He felt strongly that it would be celiac disease. I was recently diagnosed with hypothyroidism and have many of the symptoms (bowel symptoms, fatigue, abdominal pain, etc).

[KaitiUSA]

Unfortunately, September 2 was the earliest appointment they had available. He wants to do the endoscopy because if positive it will show how bad the damage is (supposedly bad cases can become cancerous), or if negative he can see what else might be the problem.

He felt strongly that it would be celiac disease. I was recently diagnosed with hypothyroidism and have many of the symptoms (bowel symptoms, fatigue, abdominal pain, etc).

If it comes back negative you can't rule out celiac though so it still may be a problem. Some blood tests are very accurate with a slim to none chance of being wrong. I have heard of false negatives in some tests but you don't hear much about false positives. They detected those levels because there is some problem that indicates celiac.

It is true if it goes untreated for a long time and there is alot of damage there are increased chances of cancer.

Thyroid disorders also are highly connected with celiac.

[mjbonsais]

Vincent, I agree with your statistical analysis of the endoscopy. Statistically you are going to get a false negative more often than a true negative or a positive.

I am one of those who's doctor only took 3 samples in the duodenum and of course it came back negative. There is a way to look at the tissue sample on a cellular level to see if the intraepithelial lymphocytes are elevated, which would indicate the early changes of celiac disease, but very few doctors (or labs) do this. I questioned my doctor on my results, and she basically refuses to believe I have celiac disease. My first GI did NO testing, just told me I had IBS when I was 16. When I went searching for aq diagnosis of celiac disease the GI I went to told me I "couldn't possibly have that", because I was overweight. When he finally did the endoscopy he didn't take ANY samples. Oh well. My insurance didn't like having to pay twice, but they had to since the first doctor wasn't looking for celiac disease, and the second one was, but not hard enough...

God bless,

Mariann

When I went searching for aq diagnosis of celiac disease the GI I went to told me I "couldn't possibly have that", because I was overweight.

Good grief as Charlie Brown would say! There are many individuals who are celiac and overweight because their bodies cannot metabolize the fat properly. Shame on that doctor for even suggesting that one.

Guess that's why I feel Enterolab testing is not only less invasive but will tell if you are predisposed to the main gene(s) of celiac sprue or gluten sensitivity.

Mary JO

[VydorScope]

Unfortunately, September 2 was the earliest appointment they had available. He wants to do the endoscopy because if positive it will show how bad the damage is (supposedly bad cases can become cancerous), or if negative he can see what else might be the problem.

He felt strongly that it would be celiac disease. I was recently diagnosed with hypothyroidism and have many of the symptoms (bowel symptoms, fatigue, abdominal pain, etc).

Have you had any of the blood screenings?

[gf4life]

There are many individuals who are celiac and overweight because their bodies cannot metabolize the fat properly. Shame on that doctor for even suggesting that one.

I know! I even took in documentation of overweight Celiac being quite common (in the form of medical journal articles) and he blew me off. In fact other than that first visit and the endoscopy (in which he didn't even take one tissue sample ) I never saw the doctor again. I always saw the physicians assistant after that. I stopped going to that office when she tried to tell me that you can't test for Celiac with an endoscopic exam it has to be a colonoscopy! I told her she had it backwards and she didn't believe me. I think she was thinking Crohn's Disease and I was talking Celiac...During the first visit when the doctor told me I couldn't have celiac disease because I was overweight, he also told me that Celiac was going to be the last thing he tested me for and he would ONLY test me for it if I was negative for everything else. I was livid! He wouldn't even run the blood tests.

God bless,

Mariann

[VydorScope]

I know! I even took in documentation of overweight Celiac being quite common (in the form of medical journal articles) and he blew me off. In fact other than that first visit and the endoscopy (in which he didn't even take one tissue sample ) I never saw the doctor again. I always saw the physicians assistant after that. I stopped going to that office when she tried to tell me that you can't test for Celiac with an endoscopic exam it has to be a colonoscopy! I told her she had it backwards and she didn't believe me. I think she was thinking Crohn's Disease and I was talking Celiac...During the first visit when the doctor told me I couldn't have celiac disease because I was overweight, he also told me that Celiac was going to be the last thing he tested me for and he would ONLY test me for it if I was negative for everything else. I was livid! He wouldn't even run the blood tests.

God bless,

Mariann

No offense, but why the heck did you not walk out and find a new doc?

[gf4life]

I did. And my next one was only slightly better. She at least did the biopsy and took samples, but she was determined NOT to find Celiac. She (the new Doc) still thinks IBS is my problem. She won't diagnose celiac disease unless there is complete damage to the intestines and no villi left. I won't go back to her either.

After the problems I am having with the GI docs. my primary care physician (who supports my being on the diet) said he would refer me to Stanford if I want to, since they know more about Celiac. But I would have to go back on gluten for additional testing and that is NEVER going to happen. I have an HMO and have to go to the doctors on my referral list. Financially, paying out of pocket for the doctor of my choice is not an option.