Negative Biopsy....could It Still Be Celiac?

[smw]

My son and I are being tested for celiac. He has the gene...don't know if I do. My biopsy came back negative. We have a family history. I have many of the GI symptoms and other symptoms. I also am anemic, low B-12 and have bad pitting edema on my legs, and several autoimune problems associated with celiac. I was sure I had it. The bloodwork and biopsy were negative. The biopsy (2 samples) were taken in the lower small intestine (the one that starts with a j). My doctor says it is 100% accurate and I don't have celiac. Does anyone know if this is true?

PLEASE let me know if you have any info. Thanks!!!

[Ursa Major]

Your doctor doesn't know what he is talking about when he tells you the tests are 100% accurate, and you can't have celiac disease. Those tests are in fact quite unreliable, and a negative blood test and biopsy can never rule out celiac disease.

Your small intestine has a surface area as large as a tennis court (or was it football field?.......no matter, very large). To take only two tiny sample biopsies (six to eight are recommended) and hoping you actually take them from damaged areas never guarantees that you get an accurate diagnosis. Especially because unless you are in such bad shape that all of your villi are completely destroyed, the damage is patchy and easily missed (and it is microscopic, so most of the time you can't tell where to take them from by looking through the little camera they put in there).

And the blood tests only have positive findings in 50% of people with celiac disease (less in young children).

The best and most accurate test remains the diet trial. If you vastly improve on the diet you know you can't tolerate gluten.

You have some of the most obvious symptoms. Anemia, low B12, celiac disease runs in the family, and you have the digestive issues.

Just forget about your doctor, and try the gluten-free diet. No doctor can stop you, it is your body.

Did you get the gene test done as well?

[VydorScope]

  smw said:

The biopsy (2 samples) were taken in the lower small intestine (the one that starts with a j). My doctor says it is 100% accurate and I don't have celiac. Does anyone know if this is true?

PLEASE let me know if you have any info. Thanks!!!

(bolding mine)

First of, that comment right there shows he is not very knowledgeable about Celiac. Most respectable doctors will take at least FIVE samples from the key sections at the beginning of the intestine. The biopsy,biased on it medical definition, can never be negative. So there again he shows a lack of knowledge about the test procedure. Since the doc does not know or understand the test he is using, any diagnoses he comes up based on such tests has to be questioned.

The blood test is very accurate, but also very subject to your present diet conditions, your natural levels of certain antibodies, and so on.

Ursa is right, you need to try the diet for 30 days and see if your symptoms inprove. BUT you must go crazy about the diet, and eliminate every trace, no matter how small, or you test will not be conclusive. If you get better on the diet, then you know that gluten is not for you and you really do not need any silly label. If you do not get better, then you have to investigate other possible issues.

[ravenwoodglass]

You got great and complete answers from the other posters, I just want to add in my agreement, it can not be stressed enough that testing for celiac is woefully inadaquate, even my GI said so the other day, of course he would like to feel less blameless for all the years of damage while I lived with the IBS diagnosis that he gave me years before I was finally diagnosed through a allergist MD assisted elimination diet. Don't rely on those tests, you do NOT need anyones permission to try the diet for you and your family, I would suggest you do so....Strongly.

[gfp]

I'll throw in my 2c and agree and disagree with everyone ...

Like the last two I completely agree on the biopsy.... and as vydorscope says this REALLY casts a lot of doubts on the compenence of your MD to only have 2 samples.... even 5 or 10 aren't going to guarantee it but 2.??? after the hassle and appointment etc. it seems a complete waste to get in there and only take 2.....

OK blood tests....

A whole series of blood tests is VERY reliable..... IF you are and have been eating gluten at the time and for several months...

However here is where I agree and disagree with vydorscope and ursa....

There isn't a single reliable blood test, rather a series that must all be run to get the best accuracy..... some are more specific and others make sure your range for that antibody is normal so that the figure from the other test is relevant or not...

Now I don't wanna drown you in info..... we can link to it if you like.... BUT a positve blood test is always diagnositc even if a biopsy is negative, like ursa says they could sample and keep sampling until they hit the right spot or not... BUT an eneterologist might not support this view... sorry I know that confusing but there is lots of research showing that celiac disease is not limited to the intestines and even further that it can manifest itself without any disgnositc symptoms in the actual intestines... (I'll link to medical papers if you like...just don't want to flood you)

As vydorscope pointed out the fact the MD only asked for 2 samples AND then says this is definitive is a BAD sign for that Dr.

Even a "stick in the mud" old school enterologist should be ordering 5+ and then say there is still a chance....

So this leads back to your blood tests....

I would assume in the absense of proof (since this is the safe option) that the MD didn't get a full suite of tests.... and therefore the negative result is not useful....

The tests can be very accurate BUT must be done correctly and must be done while your not gluten-free and not on a young child and....

Your first stage IMHO is to get the actual tests.... post them here so we can see which tests and the results...

If your already gluten-free that's one thing, if not then you might be better getting a full suite of tests before you make the leap...

One thing most of us will tell you is IF it is celiac disease and you go back gluten-free you are not likely to want to go back onto a gluten challenge to get test results. Mostly we find after becoming gluten-free we react more violently and generally feel worse if we try eating gluten specially. Once the body adjusts to gluten-free it can be hard to keep it up just for a test that is in reality confirming ehat the diet is telling you.

[Ursa Major]

I feel I must disagree about the blood test. There are people here who had negative blood tests, but positive biopsies. Before any of those blood tests will be positive, your intestines have to be in terrible shape first to make enough antibodies to show up in those tests. Once your villi are pretty much completely flattened, the blood tests are quite accurate. By that time you may have irreversible damage to not only your intestine but other parts of your body as well.

But it is true, we don't even know if that doctor did the whole celiac panel. If he didn't (and seeing how ignorant he is, it is doubtful he did), then the test was utterly meaningless.

It would be good to see which tests were done, and what the results were. There are labs (and doctors) who will declare a weak positive to be negative. Wrongly so.

[VydorScope]

  gfp said:

OK blood tests....

A whole series of blood tests is VERY reliable..... IF you are and have been eating gluten at the time and for several months...

However here is where I agree and disagree with vydorscope and ursa....

There isn't a single reliable blood test, rather a series that must all be run to get the best accuracy..... some are more specific and others make sure your range for that antibody is normal so that the figure from the other test is relevant or not...

I think our disagreement is a subject of poor wording on my part. When I said "blood test" I meant the full panal of all tests that comprise a complete blood test.

  Ursa Major said:

I feel I must disagree about the blood test. There are people here who had negative blood tests, but positive biopsies. Before any of those blood tests will be positive, your intestines have to be in terrible shape first to make enough antibodies to show up in those tests. Once your villi are pretty much completely flattened, the blood tests are quite accurate. By that time you may have irreversible damage to not only your intestine but other parts of your body as well.

And this is at the heart of my issue with the current test methods, you can not get a reliable answer until your possibly beyond the point of a full and complete recovery if you follow the so called normal doctor biased test path.

Knowing what I know now, I would test for it the same way you test for any food issue. The elimination diet/challenge cycle..

First log EVERYTHING you put in or on your body. Also log all your symptoms through out the day. Since we have a target to test in this case we can skip the normal starting point of eliminating the top 8 allergens.

Next remove gluten from your diet completely and track changes in symptoms. (remember you have to get crazed about it, no mistakes!) If you start to get better mid stream and suddenly get worse, look over your food log for clues at what foods/etc might have caused it. Remember it can take three or four DAYS for food to pass completely through you... depending on your system.

Either way, once you have been 30 days or so free of gluten, and you are feeling better (not likely to be 100%, but you should see SOME improvement if you do have celiac disease). Then eat gluten for a few days, or a week. If you have celiac disease you will experience a rapid increase in your symptom set. If you do, thats confirmation that you can not tolerate gluten.

Thats my NON-DOCTOR opinion. I am not a doctor, nor have I stayed in a holiday inn express!

[gfp]

  Ursa Major said:

I feel I must disagree about the blood test. There are people here who had negative blood tests, but positive biopsies. Before any of those blood tests will be positive, your intestines have to be in terrible shape first to make enough antibodies to show up in those tests. Once your villi are pretty much completely flattened, the blood tests are quite accurate. By that time you may have irreversible damage to not only your intestine but other parts of your body as well.

But it is true, we don't even know if that doctor did the whole celiac panel. If he didn't (and seeing how ignorant he is, it is doubtful he did), then the test was utterly meaningless.

It would be good to see which tests were done, and what the results were. There are labs (and doctors) who will declare a weak positive to be negative. Wrongly so.

Just joking really cos I think we all agree on the important parts.... but for an adult eating gluten there is a 98%+ correlation for a positive suite and biopsy.... and the last 2% has lots of explanations including mixing up at the lab...

To me the +ve serology is definitive because without the antibodies nothing is going to happen...leastwise as a autoimmune disease.... which doesn't mean you can't be intolerant to gluten/wheat.... it just means a different way...

So in some ways its just terminology.... an autoimmune disease must show a positive antibody response in order to be an autoimmune disease but then that is simply down to how we/MD's feel we/they need to classify....

I think there are plenty of explanations for non +ve blood tests and posistive biopsy or response to diet...

1) Lots of us realise what's happening and stop eating gluten! (pretty sensible IMHO)

2) Full celaic panels are not run (unfortunately I think all to often)

3) We still don't REALLY understand celiac disease.... perhaps its only partly autoimmune?

Either way...I think the biopsy is we mostly agree largely pointless for diagnosis although it can be useful to rule out other things....

Mostly as Ursa says... just look at this case... the doctor didn't even do the biopsy properly so the chance they ran a full panel seems unlikely...

[lonewolf]

  smw said:

My son and I are being tested for celiac. He has the gene...don't know if I do. My biopsy came back negative. We have a family history. I have many of the GI symptoms and other symptoms. I also am anemic, low B-12 and have bad pitting edema on my legs, and several autoimune problems associated with celiac. I was sure I had it. The bloodwork and biopsy were negative. The biopsy (2 samples) were taken in the lower small intestine (the one that starts with a j). My doctor says it is 100% accurate and I don't have celiac. Does anyone know if this is true?

PLEASE let me know if you have any info. Thanks!!!

You could have EVERY symptom of Celiac Disease, including other autoimmune problems, but not have it. BUT, that doesn't mean that you don't have Non-Celiac Gluten Intolerance, which is really just as bad. You sound exactly like me - I was SURE that I had it and was shocked when my gene test showed that I didn't have either of the main genes.

Of course, the others could be right and the doctor didn't do enough samples. The blood tests are reliable if you have completely flattened/ruined villi. Why wait until you are that sick?

Either way, if you believe that you are gluten intolerant you should at least try the diet. Or you could get tested through Enterolab. ( www.enterolab.com ) I talked with Dr. Fine in person last weekend at a seminar and I believe he is on the cutting edge of testing for gluten intolerance.

The other thing that caught my eye is your low B-12 and pitting edema. I had this also and was diagnosed with a kidney disease that I believe is directly related to my gluten sensitivity. Dr. Fine agreed that it's very possible. PLEASE go to your doctor and ask for a simple urine test to check for protein. Pitting edema is always the sign of some health problem - usually associated with the kidneys. For me, going fanatically gluten-free has helped my kidney disease istay in remission for over 3 years.

[smw]

  Ursa Major said:

Your doctor doesn't know what he is talking about when he tells you the tests are 100% accurate, and you can't have celiac disease. Those tests are in fact quite unreliable, and a negative blood test and biopsy can never rule out celiac disease.

Your small intestine has a surface area as large as a tennis court (or was it football field?.......no matter, very large). To take only two tiny sample biopsies (six to eight are recommended) and hoping you actually take them from damaged areas never guarantees that you get an accurate diagnosis. Especially because unless you are in such bad shape that all of your villi are completely destroyed, the damage is patchy and easily missed (and it is microscopic, so most of the time you can't tell where to take them from by looking through the little camera they put in there).

And the blood tests only have positive findings in 50% of people with celiac disease (less in young children).

The best and most accurate test remains the diet trial. If you vastly improve on the diet you know you can't tolerate gluten.

You have some of the most obvious symptoms. Anemia, low B12, celiac disease runs in the family, and you have the digestive issues.

Just forget about your doctor, and try the gluten-free diet. No doctor can stop you, it is your body.

Did you get the gene test done as well?

No my doctor doesn't want to do the gene test on me since she is "100% sure" I don't have it. Now she wants to do a colonoscopy and another study where I drink stuff and they xray me for 4 hours and watch it come through me. I don't think a colonoscopy is needed.

[VydorScope]

  smw said:

No my doctor doesn't want to do the gene test on me since she is "100% sure" I don't have it. Now she wants to do a colonoscopy and another study where I drink stuff and they xray me for 4 hours and watch it come through me. I don't think a colonoscopy is needed.

Put it off, and try the diet is my advice. Then bring your doc the results of your diet challenge.

A colonoscopy is a valid test to check other conditions that even if the diet proves celiac disease you may want to consider.

[smw]

  VydorScope said:

Put it off, and try the diet is my advice. Then bring your doc the results of your diet challenge.

A colonoscopy is a valid test to check other conditions that even if the diet proves celiac disease you may want to consider.

I live in Atlanta Georgia and there is a doctor in Atlanta that speaks at different Celiac events and seems to be well respected for Celiac. She doesn't take insurance so it is expensive, but I think I will go see her and see what she says about all of my results and see if she still recommends a colonoscopy even if I do the celiac diet. Thanks for all of your input!!! Do you know if since my son tested positive for the gene if I have to have it too?

[smw]

  lonewolf said:

You could have EVERY symptom of Celiac Disease, including other autoimmune problems, but not have it. BUT, that doesn't mean that you don't have Non-Celiac Gluten Intolerance, which is really just as bad. You sound exactly like me - I was SURE that I had it and was shocked when my gene test showed that I didn't have either of the main genes.

Of course, the others could be right and the doctor didn't do enough samples. The blood tests are reliable if you have completely flattened/ruined villi. Why wait until you are that sick?

Either way, if you believe that you are gluten intolerant you should at least try the diet. Or you could get tested through Enterolab. ( www.enterolab.com ) I talked with Dr. Fine in person last weekend at a seminar and I believe he is on the cutting edge of testing for gluten intolerance.

The other thing that caught my eye is your low B-12 and pitting edema. I had this also and was diagnosed with a kidney disease that I believe is directly related to my gluten sensitivity. Dr. Fine agreed that it's very possible. PLEASE go to your doctor and ask for a simple urine test to check for protein. Pitting edema is always the sign of some health problem - usually associated with the kidneys. For me, going fanatically gluten-free has helped my kidney disease istay in remission for over 3 years.

Thanks for the info. They have checked for protien in my urine and run a lot of labs on kidney, heart, and liver. This has been going on for quite some time and they don't know what it is. That is when I asked to be tested for Celiac. My family doc did the basic screening and I went ahead and went to a GI doctor on my own. I also see an endocrinologist who can't figure it out.

[VydorScope]

  smw said:

I live in Atlanta Georgia and there is a doctor in Atlanta that speaks at different Celiac events and seems to be well respected for Celiac. She doesn't take insurance so it is expensive, but I think I will go see her and see what she says about all of my results and see if she still recommends a colonoscopy even if I do the celiac diet. Thanks for all of your input!!! Do you know if since my son tested positive for the gene if I have to have it too?

Your son got half his genes from you, and half from his father. Since you have all the symptoms, and your husband does not, I would say its more likely he got it from you then from him. I am not well versed on the gene testing for celiac disease since its way out of my price range, so I am only speaking from general knowledge.

Go see that doc if you can afford it, but I would suggest you go after you try the diet so you have as much info to present as possible and possibly reduce the need for a follow up which would cost even more. Just a thought...