Testing

[Beck]

When is a good time to be re-tested after starting the gluten free diet? My daughter and I have only been at this for a month, was just wondering when we should re-test to make sure our levels are going down?

I am kinda nervous about getting my daughter re-tested as we opted not to do the biopsy and docs werent happy with that, so scared her levels aren't going down and they would throw it in my face. I know here symptoms have all most completely gone away so I am trying to hold on to that as yes indeed this is working.

Just wondering

[ThatlldoGyp]

When is a good time to be re-tested after starting the gluten free diet? My daughter and I have only been at this for a month, was just wondering when we should re-test to make sure our levels are going down?

I am kinda nervous about getting my daughter re-tested as we opted not to do the biopsy and docs werent happy with that, so scared her levels aren't going down and they would throw it in my face. I know here symptoms have all most completely gone away so I am trying to hold on to that as yes indeed this is working.

Just wondering

Hi, I didn't get the endo for validation of diagnosis ( I KNEW I had celiac) , but I did get it for staging so I could judge healing a year later. I am actually ok with getting another one (that is big for me because I have such a sensitive gag reflex I can barely get dental x rays, lol!) a year later. I am also a "minimal invasiveness" person, but in the end, I was really glad I did it... just to see how things are going internally. I am not trying to sway you one way or the other, but I thought it might help to hear from someone who is reserved, but has been there and amazingly, done that!

Kids do heal faster than adults, so I can see her responding to the diet very quickly. For most Docs, they want to follow standard procedure or they get uncomfortable for very good (and legal) reasons. They can document everything this way. It is considered the "gold standard" for them.

I can see both sides of the coin, having been there myself, but personally, I was very happy I made the choice to get it done!

If you search this site there are articles about testing that I think you will find very helpful!

this might help to get you started :

Open Original Shared Link

[MDRB]

It can take a good few months to heal. Blood test are usually less acurate than biopsy, so I would probably wait until you have been entirely gluten free and without symptoms for a period of four months before getting re-tested, especially if you are worried about your doctors acting like... well... doctors actually

Good luck

[gfp]

Hi, I didn't get the endo for validation of diagnosis ( I KNEW I had celiac) , but I did get it for staging so I could judge healing a year later. I was actually ok with getting another one (that is big for me because I have such a sensitive gag reflex I can barely get dental x rays, lol!) a year later. I am also a "minimal invasiveness" person, but in the end, I was really glad I did it... just to see how things are going internally. I am not trying to sway you one way or the other, but I thought it might help to hear from someone who is reserved, but has been there and amazingly, done that!

Kids do heal faster than adults, so I can see her responding to the diet very quickly. For most Docs, they want to follow standard procedure or they get uncomfortable for very good (and legal) reasons. They can document everything this way. It is considered the "gold standard" for them.

I can see both sides of the coin, having been there myself, but personally, I was very happy I made the choice to get it done!

If you search this site there are articles about testing that I think you will find very helpful!

this might help to get you started :

Open Original Shared Link

The gold standard really only applies if you DEFINE the disease by that test.

A full panel blood test is actually far more reliable at giving a positive but it all depends HOW you classify the disease. A GI will lean towards calling celiac disease a GI problem and a neurologist a neurological problem ???

Open Original Shared Link

Unlike antiendomysium or antireticulin antibodies, antigliadin antibodies are antibodies against the extrinsic causal factor for gluten sensitivity. Antiendomysium antibodies may be more specific for coeliac disease, but no large scale data are available as yet on their specificity or sensitivity in patients with gluten sensitivity where the immunological target organ may be other than the gut.

The typical clinical expression of a patient with gluten sensitivity where the sole manifestation is neurological is cerebellar ataxia, often with a peripheral neuropathy.9 Most of these patients will have histologically normal mucosa on biopsy and few or no gastrointestinal symptoms. Both the ataxia and the neuropathy may be reversible with adherence to a gluten free diet.9

If you read the full article biopsy is pretty useless as a diagnosis in many patients and too late for many others. My own analogy is actually what a dentist once said to me..(paraphrased). "tooth ache is pretty poor as a defense againt tooth decay and disease - by the time it hurts the damage is done and the pain is out of all proportion"

I see biopsy the same way....

What does a positive biopsy mean in statistical terms? An easy way to view it is to imagine a game of "battleships" except we have some weeds on a tennis court instead of battle ships

How big does the grid need to be ?

Open Original Shared Link

The villi help to increase the total area on the outside of the small intestine to the size of about half a tennis court.

So a tennis court is 60' x 120' and half a tennis court is 60'x60' or 720"x720" ... (actually that includes the area around the lines but since its far easier to multiply by 60 in my head and I can't be bothered with a calc it will do ... so that's 518,014 or lets just say 1/2 million 1" squares. (i'll wait while you draw this on paper ) So assuming a biopsy take a 1" square (not a tiny 1/16th or smaller) lets imagine the chance of detecting damage.

Lets scatter say 1000 1" damaged villi (or course villi are only 1/50th that size so thats very generous... and play battleships. However we have to change the rules... usually when you play we say hit or miss but the biopsy doesn't know until later so there is no hit or miss and you only get 6 goes ...

Your chance the first time is 1,000:500,000 or 1:500 and the second time 1,000:499,999 etc. so lts keep that as 1:500 ...

So its rounding down 6:500 chance of finding a damaged villi.

Lets say your cost for a biopsy is $1000 anyone want to play ???

Of course we are not gambling something is trivial as $1,000 we are gambling with our health ...

So what's the real situation?

Open Original Shared Link

This is a more accurate biopsy where they test the biopsy for antibodies (you'd think this would be standard after all that fuss and expense but????)

Background: We measured anti-transglutaminase (anti-tTG) antibody in the culture medium of intestinal biopsy specimens from patients with suspected celiac disease (celiac disease) and evaluated the relationship between antibody production and severity of intestinal mucosal damage.

Methods: We performed diagnostic testing for celiac disease on 273 consecutive patients. In addition to routine histologic evaluation of duodenal biopsy specimens, we assayed anti-tTG antibodies in serum and in the culture medium of duodenal biopsy specimens.

Results: celiac disease was diagnosed in 191 of the 273 patients. Sensitivity and specificity of the serum anti-endomysium (EmA) and anti-tTG assays were 83% and 85% and 99% and 95%, respectively, and both had 88% diagnostic accuracy. EmA and anti-tTG assayed in the culture medium had 98% sensitivity, 100% specificity, and 98% diagnostic accuracy (vs serum assays; P <0.0001). Twenty-nine celiac disease patient specimens (16%) were negative for serum anti-tTG and EmA; for 24 of these patients, anti-tTG assay of the culture medium was positive. The celiac disease patients whose biopsy specimens were positive for serum antibodies showed the following intestinal histologies: total villous atrophy, 35%; severe villous atrophy, 25%; mild atrophy, 25%; villi with no atrophy but with increased intraepithelial lymphocytes, 15%. None of the celiac disease patients whose specimens were negative for serum antibodies showed total or severe villous atrophy; 77% had mild villous atrophy, and 23% had no villous atrophy but had increased intraepithelial lymphocyte counts. Mild villous atrophy was also seen in specimens from ~15% of patients without celiac disease.

Great a 35% success rate .... ??? (and that is on TOTAL atrophy)

If we include severe it goes up to 60% ...

So we have to be pretty damaged for the biopsy to be positive except by chance...

This leaves 40% undiagnosed ... or wrongly diagnosed with false negatives.

Those 40% will be told they should continue to kill themsleves (sorry eat gluten) and get retested when the damage is worse and possibly not repairable and meantime they are according to Hadjivassiliou, doing themselves neurological damage including the brain and central nervous system ... bah who needs those anyway, I guess the brain is just like the appendix and we can live without it...

Whatever happened to "do no harm"?

My conclusion: Many of us here have neurological manifestations and the work of Hadjivassiliou shows this can and often happens BEFORE any villous atrophy.

Meanwhile patients with +ve serology are being put back on gluten and given brain and nerve damage ....

The biopsy as a gold standard is worse than a poor test.. its actually a very dangeous standard.

Look at it this way .... IF celiac disease was a communicable disease we could spread do you think the medical community would ignore this?

Do we wait for the weeping sores on bubonic plague before making a diagnosis or do they act on the blood tests?

Imagine someone with bubonic plague turning up in hospital and blood tests being positive then being told to come back if they get lumps under thier armpit?

[ThatlldoGyp]

I am not sure what your point is.

My statement was just explaining to the mom why the doctors were wanting the endo. and why they have an "attitude" about patients getting one or not. She should be aware why they are saying what they are saying. But in the end, it is really her choice. The debate will go on and on within the celaic and medical community for some time as to the need or wisdom of an endo, and I am glad for it. This is how this art grows and changes for the better. I personally feel that both bloodwork and endoscopy are tools to be used to gather information in order to best understand what is going on with each patient. People just have to use their best judgement and hope they are getting it right. No one ever claimed that medicine is perfect.

I am glad I got and will continue to be happy having an endoscopy so that they can look at the damage (which was not hard to find) and assess on a microscopic level how my villi are doing as far as recovery. I was happy to find out there were no ulcers or cancerous growths to be found. It is a choice that I made that I am happy with.

[ThatlldoGyp]

Hi, back to your question.. kids can heal very fast (lucky them!) Personally, I would wait 6 months and then check again. If the numbers look better, then you are doing the right thing. Discuss the numbers with the doctor and what they think. Don't be afraid of the doctors being mad at you, if your doctor doesn't want to work with you, then find another one. As long as you or they do not think that there is anything else going on with her gut, and your daughter is improving, then make your decision and stick with it. They will just have to work with you and not pout about it. Some docs do get very uncomfortable when they can't do things "by the book" so be prepared for that.

My doctor uses both blood tests and endoscopy and is happy to go any route a patient will want, as long as they continue to improve and stick to a gluten-free diet. They are just tools to understanding what is going on. I'd rather not have an endo, but in the end, I was glad I did. It is such a personal decision though and anyone on this forum should respect whatever you decide.

But, to be fair, if it turns out that there is more going on than just celiac and you refuse the endoscopy, just be ready to understand and accept the consequences of your decision... and I don't mean that in any way to scare you, I just felt that I should do the medical disclaimer thing for the sake of medical practitioners on this forum. There are other things that they might want to check/look for while they are there. Ask your doctor if they are looking for anything other than sprue. The answer to that might help you feel firm in your decision.

[Tim-n-VA]

While there are valid reasons for an individual to opt to have or not have a biopsy, I'm skeptical about some of the chances of a biospy finding damage. The process involves a scope with a camera and if there is visible damage that is where the biopsy will be taken. It isn't just a pure random sample.

The calculations given by GPF just don't look right to me. In the denominator you are expanding the area of the intestines by the surface area of the villi and in the numerator it looks like you are still keeping th size of a biospy site. Also, I read those statistics to be different from how they are being explained. What it is comparing is the visible damage when there is a positive biopsy. It says that with the positive biopsy there is total atrophy 35% of the time, not that with total atrophy there is only 35% positive biopsy.

Still, it is easy to confuse the concept of whether or not someone has celiac with the combination of tests that provide a definitive diagnosis.

[gfp]

I am not sure what your point is.

My statement was just explaining to the mom why the doctors were wanting the endo. and why they have an "attitude" about patients getting one or not. She should be aware why they are saying what they are saying. But in the end, it is really her choice. The debate will go on and on within the celaic and medical community for some time as to the need or wisdom of an endo, and I am glad for it. This is how this art grows and changes for the better. I personally feel that both bloodwork and endoscopy are tools to be used to gather information in order to best understand what is going on with each patient. People just have to use their best judgement and hope they are getting it right. No one ever claimed that medicine is perfect.

I am glad I got and will continue to be happy having an endoscopy so that they can look at the damage (which was not hard to find) and assess on a microscopic level how my villi are doing as far as recovery. I was happy to find out there were no ulcers or cancerous growths to be found. It is a choice that I made that I am happy with.

The point is two fold...

Firstly the biopsy is not a useful diagnostic tool for celiac disease unless we only count celiac disease as total villous atrophy.

For those who are tested and test negative it can be a very hard uphill and expensive battle to then get retestd or have the blood tests stand up by themselves.

Most GP's and GI's wil be from reasonably to very happy with a positive full panel. Many of the same GP's and GI's will then change their mind if the biopsy is negative.

From a getting a diagnosis point of view the biopsy is risky because it has so many false negatives yet MD's tend to ignore that because its a "golden test". This can cause all sorts of problems for the patient ... the most common of which is to be put back onto a non gluten-free diet.

The second point is the biopsy (or more accurately the gluten challenge) itself is actually harmful if the patient is already gluten-free.

This is not debatable, the goal of a gluten challenge for biopsy is to do so mcuh damage to your intestines it is easily found by random testing.

Unfortunately many of us here have suffered irreversible damage by this point.

Given that the vast majority of GP's and GI's are mis-informed about the procedures this leaves a lot of us in limbo. Many GI's do not even know that the patient needs to be eating gluten for the test to be positive let alone the astoundingly high false negative rate.

The overwhelming majority of GI's do not accept neurological symptoms nor depression, I have even had them refuse to read the clinical trials documenting this and dismiss it as fantasy (without reading it). We have peripheral neuropathy because its psychosomatic, depression because we have a limited choice at the supermarket... etc.

Many of us here have suffered permanent and irreverisble damage whilst waiting for a positive biopsy. Many of us took 20yrs plus to be diagnosed. Heck back in about 1996 I had a stomach endoscopy but it never occured to them to do a intestinal one at the same time... and when it was over they offered me sandwiches...

This is how this art grows and changes for the better.

Unfortunately diagnosis is not an art but a science..unfortunately, because the science is often ignored and far too few GI's and GP's actually READ the testing methodology.

I totally agree that it is useful to advance our knowledge but unfortunately, from an individuals point of view far too many actually complicate diagnosis...

More importantly it would be nice to have a GI have a check for other nasties .. but again the danger is not getting diagnosed or put onto aseries of repeated gluten challenges...

To put it simply ....many GI's or GP's would be happy with serology but as sson as they get a vague or negative biopsy (regardless of if the patient has eating gluten in 20 years) they dismiss celiac disease... by dismissing celiac disease they dismiss neuropathy, deficiencies like calcium etc. etc.

[kayavara]

My doctor just called today to set up endoscopy #2 in 2 months.I was just told 5 days ago that I had celiac disease(found through endocsopy #1...blood test not back yet).Wow that seems fast....I too ask ...can they see a difference so soon??

Kay

[Ursa Major]

The process involves a scope with a camera and if there is visible damage that is where the biopsy will be taken.

The problem with that is, that often the damage is there, but not severe enough to be visible to the naked eye. In which case the camera will not help in finding damaged spots. Too many GIs have claimed that a person is fine and doesn't have celiac disease because of what he/she has seen with that camera. In some of those cases the lab found sufficient damage anyway to diagnose the patient with celiac disease. But more often than not, the damage is missed in those cases.

Also, GIs usually only take biopsies from the top part of the intestine, while the damage may be much farther down.

Beck, I think you made a good decision with your daughter. If the diet works, she is at least gluten intolerant. One of my daughters, her five children, and two more granddaughters are on the gluten-free diet without testing for celiac disease. Some of them had amazing recoveries from all kinds of problems.

My kids don't care about an official diagnosis any more than I do. After all, who's business is it what we feed our kids, as long as they are thriving?

[Tim-n-VA]

Just to be clear, I'm not advocating any specific action regarding biospsy but there are people on this board who give incorrect information about how likely the test is to yield false results, portraying it as a purely random sample which it is not. It is not a perfect test because the damage frequently is patchy and mistakes can be made. That is information that puts test results in context not information that makes the test worthless.

[Ursa Major]

I am not saying the test is worthless in general, just not terribly reliable much of the time. But if somebody has been on the gluten-free diet for several months, it certainly is worthless.

I agree with gfp though that celiac disease is much more than damaged villi. And most doctors won't even listen to you and tell you its all in your head if you claim that gluten causes problems other than gastro symptoms in you. Damaged villi is only ONE possible manifestation of celiac disease, rather than the only valid one for diagnosis.

[Tim-n-VA]

I think that there is a misunderstanding of how the tests are supposed to be used and how they work. And that includes some doctors. My background is in statistics not in medicine so I get a little concerned when people use terms like "many", "most" that imply a higher probablility that is supported by any fact.

The reality is that all medical tests will have one of four outcomes: a false negative, a false positive, a correct negative or a correct positive. The rates of those categories vary from test to test. For a single test to be a "gold standard" does not make sense. In my admittedly limited reading, I think the proper thing would be that a positive biopsy with a positive blood test is a very good standard (a gold standard) for a positive diagnosis of celiac. That gets to the likelyhood of false results on two independent tests, etc. I think people could make the wrong conclusion about what it would mean if one or the other of those tests give a negative result. As was pointed out, the test is checking to see if your body is reacting to gluten not testing to see if you have celiac so it isn't even appropriate if someone is already gluten-free.

I guess the bottom line is that I don't disagree with the perspective being advocated with respect to testing but I think that misleading information is being used to support those positions.

[ThatlldoGyp]

Hi, that sounds very fast to me. I would ask what they are looking for and why so fast. Mine did not even want the first one until 6 mos into the diet. Did they find villi changes? were there any "suprises"? The "standard" (and here I go again stepping into it, lol) is 1 yr. after the first one. And usually that one to judge healing. I would really be asking some questions here.

[ThatlldoGyp]

thank you. And Ursa, you are great as always.... I think gpf's math is shaky at best, lol! and total villous atrophy is not necessary (uh, refer to marsh scale), and biopsies are not blindly taken. Thanks for taking the time to answer him as I have had enough of this and I have only been on this forum for a few months! Ugh. Medicine is an art and the doctors must use the tools available to them and use them wisely. Believe it or not... doctors and medicine are not enemies, but our partners. Sometimes it takes time to find the right partner. I do think it is important that we, as patients understand where our doctors are coming from and take what they have learned into consideration. Only with that understanding are we able to move forward together, or understand our incompatibility and we can resume our search for someone who best fits what we need in a practitioner. If the doctor is willing to learn and work with us, hooray! If they are light years ahead of us, hooray! I was lucky, I had a fit. This mom needs to find if she has a good fit and then work from there.

[ThatlldoGyp]

You still are not getting my point and want to argue about the article for some reason!The point is that I wanted to let the mom know where the doctor was coming from and why they are saying what they are saying. Educating yourself about practice guidelines that they doctors will be using is a good first step in helping one make the decision for or against certain procedures.

And btw, total villous atrophy is not necessary. The test is not useful for diagnosis once a patient has been gluten free for an extended amount of time. These are not blind samples and they have a fairly good idea of where to look. It is also useful to look for other issues such as GERD,ulcers, spinchter issues, neoplasms, etc. It is also helpful in deciding if this is celiac or just gluten sensitivity. The difference does matter to the doctors as it could indicate allergy vs. intolerance. (e.g.: I am intolerant,but my bro is allergic, we are both gluten-free though). I personally would never do a gluten challenge, but I understad why they would want one. And no doctor I know is going to tell a patient with a +IGA and TTG that they should go back on gluten. Most say, "we could not find any damage, but with that blood work, you need to go gluten free". A neg. biopsy means that they are healed, or that they could not find an area of damage. The combination of the bloodwork and the endo is the "gold standard" by the way, not just the endo. At least in my GI's practice.

I am not saying that having endoscopy is the one test that says it all. But it is important to understand where our doctors are coming from. It is the first step in communication. I found it very helpful to say," I understand that this is what you were taught and why you want this." it lowers barriers and helps make the patient-doctor relationship more about teamwork and less about "hey you! Fix this!".

MEDICINE is an art, progress can be slow, and the care we recieve is only as good as the practictioner. At least they are not doing blood letting or applying mercuric compounds anymore, lol! It is tragic that many of us have had such a hard time being diagnosed. I agree that many doctors are not as educated about celiac as they should be, but I am not willing to make sweeping generalizations or willing to throw the baby out with the bathwater, so to speak.