No Need For Biopsy

[TrillumHunter]

Hello all,

After 13 years of chasing around what was wrong with me I finally got a blood test for celiac disease. I found out yesterday it was positive. Today I'm feeling more relieved and hmmm, empowered I suppose. At least I know what is wrong (and I'm not a hypochondriac nor do I have MS or diabetes)

Here is my question for you all. My family doctor says the blood work is enough. He doesn't think I need a biopsy or to even be referred to a gastroenterologist. He said stay on the diet and in three months have a colonoscopy to see if everything is healed. He did say colonoscopy not endoscopy. I'm not sure I feel comfortable with this plan of action and I told him as much. He said there is nothing a a g.i. can do so why go? I'd like to know what the pros and cons are of this approach. After such a long time of feeling bad and chasing down the reason I'm not eager to see YET ANOTHER doctor for ANOTHER round of tests.

Thanks for any help and advice. I know I will learn so much from this board and I hope to be able to add a little bit as well!

Monica

[JodiC]

Hello all,

After 13 years of chasing around what was wrong with me I finally got a blood test for celiac disease. I found out yesterday it was positive. Today I'm feeling more relieved and hmmm, empowered I suppose. At least I know what is wrong (and I'm not a hypochondriac nor do I have MS or diabetes)

Here is my question for you all. My family doctor says the blood work is enough. He doesn't think I need a biopsy or to even be referred to a gastroenterologist. He said stay on the diet and in three months have a colonoscopy to see if everything is healed. He did say colonoscopy not endoscopy. I'm not sure I feel comfortable with this plan of action and I told him as much. He said there is nothing a a g.i. can do so why go? I'd like to know what the pros and cons are of this approach. After such a long time of feeling bad and chasing down the reason I'm not eager to see YET ANOTHER doctor for ANOTHER round of tests.

Thanks for any help and advice. I know I will learn so much from this board and I hope to be able to add a little bit as well!

Monica

Hi and welcome to the board!!!

Blood work is not enough. An endoscopy is the only way to truly diagnose Celiac and or rule it out. Your doctor (bless his ignorance) doesn't seem to know the first thing about celiac, otherwise he would know that a colonoscopy is the wrong test. I would suggest going to a gastroenterologist because the diagnosis is just the beginning. If he won't refer you than find someone Who will. You will need other test now and for the rest of your life. Celiac is an autoimmune disease and normally you will have a secondary or primary autoimmune disease. I think most of us do. I myself also have Sjogren's and possibly Lupus (waiting for test results). The most important thing you can do for yourself is take responsibility for your own health. Read up on everything you can concerning autoimmune, and find a doctor that is familiar with the disease or at least willing to work with you. Your doctor is not. Also, you need to be still ingesting gluten right up until the biopsy as this is the only way to diagnose. Do not go gluten free until after you know the results. I know you are tired of all the tests and money going out but your health is too important not to be vigilent. Without health you have nothing, not to mention the horrible consequences of untreated Celiac Disease. I have seen first hand what that will do to you and it is not a pretty picture. Good luck with everything and keep us posted.

God Bless

Jodi

[Lisa]

Positive blood work is adequate to diagnosis Celiac.

[RiceGuy]

Well, what matters to me is that the gluten-free diet has made such an enormous difference, I could care less what tests there are, or what results they'd give. To me it's the diet which is proof positive.

[gfp]

Blood work is not enough. An endoscopy is the only way to truly diagnose Celiac and or rule it out.

I have to disagree with this in the strongest possible way....

A biopsy is practically useless for diagnossing celiac, which doesn't mean they don;t have a use but as a diagnositc tool they are worse than useless.

I'm not using worse than useless as a metaphone I mean it quite literally....

Firstly the biopsy only measures the current amount of damage to the villi that are tested. That's it... the isides of your intestine lain out would be about the same size as a tennis court .. each biopsy sample is about the size of a pin head but lets put it into context saying the size of a blade of grass...

Imagine a tennis court of grass with a few "weeds" for the sake of arguament lets say little baby wheat stalks the same sort of size as the grass. (we are still being generous in scale here)...

Now Im going to blindfold you and give you a little periscope..to see through. and at the end of this periscope is a little clamp.... your job is to test some of the samples of the grass and determine if it has wheat growing in it or not...

What are your chances of taking a single sample and it containing wheat?

the answer of course depends how much wheat there is....

lets say its 1:1000 and the tennis lawn also has some tother things growing in it, the odd dandylion or whatever drifted in ton the wind... even with 1:1000 (which is still thousands of wheat shoots) your chance of finding it randomly is slim to non...

If you take 5 samples its better... if you start being able to tell baby wheat from grass then it gets highrer again but its certainly never going to be a reliable method with only 1:1000 being wheat.

Damage to villi can be completely microscopic and not even visble to the naked eye.. so at this point your sampling randomly or looking for areas that might have a different color? look slightly different...

Many people are biopsied and found negative and then a few months later re-biopsied and found positive....

Its all down to a matter of chance and how much damage you have done.

On the other hand you can wait until the guy mows the court and take the cuttings and then test each one or altogether for the presence of wheat...

This is more or less what the blood test does... when a full suite is taken...

The really really bad thing about relying on biopsy is simply that if its negative your options are ... ignore the positive blood test (if you had one), ignore positive response to diet (if you have one) and then set out to eat gluten for an extended period until you actually do enough damage to get a positive result.... and that damage may never repair itself totally.

A gluten challenge aiming for a positve biopsy is fundamentally designed to do enough damage to make the sampling more sucessful....

The second important reason it you can have celiac disease and not even have GI damage.... and this is becoming increasingly the way research shows. Patients with celiac can go on to develop other autoimmune diseases... even without ever showing a damaged villi....

In reality villi get damaged all the time anyway.... just like other parts of the body and they divide and repair as a normal part of life. However unlike for example the cells lining the stomach they are not designed to constantly divide and repair... hence their enforced increased rate of division and repair is what causes the cancer risk....

If you imagine a threshhold where your body repairs villi at a steady rate then significant amounts of damage will only ever be seen once you cross this threshold....

until you do its a case of n are destoyed and n are repaired on a daily basis.. then chance of finding a damaged one in the millions of healthy ones is pretty small...

Some things such as the body being stressed due to illness, pregnancy etc. can act as a trigger... the body goes from a state of damge/repair to the damage being more than can be repaired... or the same thing just happnes slowly as we get older.

Other irritants including h. pylori can upset the balance along with lymes and others...

What is important is once this threshold is crossed, its crossed... pretty much no going back.

[Fiddle-Faddle]

I gotta agree with gfp here--he as absolutely right.

The current definition of celiac IS based on villi damage--but if you are gluten intolerant (as proven in your case by bloodwork AND dietary response) and continue to eat gluten, that WILL result in villi damage.

Endoscopies DO carry risks, and the end result for you is the same whether or not you get an endoscopy--a gluten-free diet.

Sorry to be repetitive (many of you have heard me say this in other threads), but waiting to diagnose celiac disease only after seeing villi damage is like waiting to diagnose a peanut allergy only after seeing an anaphylactic response.

[gfp]

I gotta agree with gfp here--he as absolutely right.

The current definition of celiac IS based on villi damage--but if you are gluten intolerant (as proven in your case by bloodwork AND dietary response) and continue to eat gluten, that WILL result in villi damage.

Endoscopies DO carry risks, and the end result for you is the same whether or not you get an endoscopy--a gluten-free diet.

Sorry to be repetitive (many of you have heard me say this in other threads), but waiting to diagnose celiac disease only after seeing villi damage is like waiting to diagnose a peanut allergy only after seeing an anaphylactic response.

Actually even that is starting to change....

Open Original Shared Link

I saw a major clinic (not mayo but another big one a few weeks ago, can't find it right now) but they actually stated that biopsy was not a good standard for diagnosis. ( It appeared in my google news filter for celiac....)

I once remember a dentist telling me that toothache is a lousy indicator to see a dentist! It occurs to me its the same thing...

[SunnyDyRain]

My doctor saw no need for me to go though the uncomfort and hassle of seeing a GI specialist with my positive blood test. I was going "Gluten lite" from blood test til diagnosis ... (3 mo.. long story!) at that point she was " go gluten free and see if it makes you feel better! " She says I may want to go to a GI at some point, but the gluten free diet may take care of the IBS completely (I was having D when eating non gluten food also)

I'm so glad no biopsy is needed!

[MaryAnne729]

Hi I'm new to all this. I have a question about lab results and the need for a biopsy, or not.

My doctor ran Gliadin IGA and IGG . My IGG AB was 44 (Mod Pos to Strong Pos:>30 units), and Gliadin IGA AB was 8 (Negative: >20 Units.) My doctor told me I did not need a biopsy, according to my results I have celiac disease. (what started all this was a severe iron deficency along with misc. symptoms which I have found are common)

I was told last week to stop all gluten products, so I have been using this site to try and make sense of all this, and finally just thought I'd put this out there and see if you all can help.

Thanks so much.

[lcbannon]

I too am very new to this and after reading lots of info on this site and others I have elected to NOT do endoscope.

1. The chance of them getting sample from a "damaged" spot not that high.

2. What diff will it make, I have went gluten free already- why do more tests.

3. No matter what tests show I will stay gluten free I feel so much better, it has not by any stretch solved all my problems but anything helps.

4. Even if all I am right now is GI if I eat right I will never become a full Celiac- a good thing.

Good luck.

p.s. I have sent sample off to Enterolab for results because I read not everyone tests postive on the blood test either, but yet still have it.

[MaryAnne729]

My blood test was done by Cleveland Clinic. I wonder how accurate they are in this diagnosis.

I'm trying to keep a positive outlook, only having followed the diet for 8 whole days. I've only noticed less foggy feeling. I know I need to give it a lot more time. My feeling I guess is it's not going to hurt to try and see how I feel, or if my other symtoms start to get better.

[ravenwoodglass]

I say you have a very intelligent doctor who knows his stuff. I was diagnosed without a biopsy because the challenge almost killed me. Now 5 years later I decided to let him do an endo because I was having my "I'm 50 time for a routine colonscopy". I had a nasty reaction to the prep and if that wasn't enough the meds they gave me never worked and the doctor didn't know it. I was fully consious, terrified and felt everything. The whole experience along with a lot of pain is relived every night now in my dreams. I won't get too graphic but it was an experience I will NEVER repeat for anything. My DD who is studying for her masters in nursing said the doctor didn't know I wasn't under. I would have thought my repeated 'That hurts' would have been a clue but he didn't stop until I actually yelled loud enough to be heard in the waiting room, then they strapped me down and took me in for the second procedure. After all you can't yell once they get that mouth guard in.

[ravenwoodglass]

My blood test was done by Cleveland Clinic. I wonder how accurate they are in this diagnosis.

I'm trying to keep a positive outlook, only having followed the diet for 8 whole days. I've only noticed less foggy feeling. I know I need to give it a lot more time. My feeling I guess is it's not going to hurt to try and see how I feel, or if my other symtoms start to get better.

There are a lot of false negative with the celiac blood tests, however there are not false positives. I know that is probally not what you want to hear but if the blood tests were positive you are celiac.

[MaryAnne729]

I just have to say thank you all very much! I guess like everyone who starts in this process of diagnosis, you have some degree of denial about whether you actually have celiac disease. I'm here for the long haul, because I'm not willing to give in to the concequences of not following a gluten-free diet!

Another question, I have two teenagers, 17 & 14, would you have them tested, and would the blood test be positive if they don't have symptoms? I've had vauge symptoms for as long as I can remember, the intermittent D, lactose intolerance off and on, things just started to get out of hand with exhaustion, low iron, sore joints, irritability (actually according to my family I've had that one a long time! LOL) I also have hypothyroidism.

I guess you have to laugh, or cry. Today I just feel very emotional! I guess it's just realizing THIS IS FOR LIFE. It's so overwhelming!

Sorry for the whinning!

[TrillumHunter]

This has been so helpful to me! The analogy from gfp made it so clear to me. Now I've been gluten free for two days. Today is the first day I haven't woken up queasy in a long time. I went by myself and did some grocery shopping at the health store. I did have a brief pity party for myself when I realized what a change this will be for me. I'm okay this morning but I imagine I will have that feeling again.

Mary Anne I have already scheduled a test for my 8 yo daughter. It was the first thing i did when I got home from the dr with my own diagnosis. She has MANY symptoms. My boys don't have visible symptoms but they'll be tested as well.

Despite having lots of concerns about how I'll manage this, I'm glad to have the diagnosis. I've lived under the shadow of "possible MS" for 13 years. celiac disease can be managed--by me!

Thanks for all the help!

[MaryAnne729]

TrilliumHunter,

I keep telling myself it could be worse, and an MS diagnosis is much worse!

Good luck with your children. I think it would be nice to know, so they can start on a healthy lifestyle if they need to be gluten-free.

My nephew has many food allergies, wheat being one of them, however his reaction is anaphalaxis. I still wonder if he has some component to celiac disease or if it's an allergy.

My daughter actually has some mild symptoms, something like I had growing up, so I wouldn't be suprised if she tests positive, my son, such a good kid, told me he'd eat what I would so I wouldn't be the only one eating different. (of course I haven't let him yet for testing.)

Thanks again, and have a nice day!

[ravenwoodglass]

I was another one who lived under the MS shadow. I had problems with movement and reflexes since childhood and also what turned out to be ataxia. Except for a couple residual nerve problems I have recovered pretty much fully. It did take awhile and it was a gradual process but after 6 months gluten-free I realized one day that I had run up the stairs without even thinking about it. I sat at the top and cried. I too was close to a wheelchair and relied on canes, walls and furniture to move around. I even have lower leg reflexes now, something I had not had since childhood. That took about a year. Nerves grow slowly.

On the issue of testing the kids, please do. There can be false negatives though and remember that even a low positive is a positive. Celiac can impact much more than just the stomach. It is also a neurotoxin that can make learning more difficult, can cause mood swings that can be mistaken for 'normal adolescent moodiness' or depression. It can also cause autoimmune destruction of other organs even without the extreme GI symptoms that our doctors commonly wait for. I insisted on testing for my 'asymptomatic' family members, the difference in them gluten-free is astounding even the one who only showed positive by one point.

The lifestyle takes a bit of adjusting but you have found a good place to help make that adjustment as smooth as possible.

Krista

[Pacer]

I just have to say thank you all very much! I guess like everyone who starts in this process of diagnosis, you have some degree of denial about whether you actually have celiac disease. I'm here for the long haul, because I'm not willing to give in to the concequences of not following a gluten-free diet!

Another question, I have two teenagers, 17 & 14, would you have them tested, and would the blood test be positive if they don't have symptoms? I've had vauge symptoms for as long as I can remember, the intermittent D, lactose intolerance off and on, things just started to get out of hand with exhaustion, low iron, sore joints, irritability (actually according to my family I've had that one a long time! LOL) I also have hypothyroidism.

I guess you have to laugh, or cry. Today I just feel very emotional! I guess it's just realizing THIS IS FOR LIFE. It's so overwhelming!

Sorry for the whinning!

Mary Anne - I will never forget the look on DH's face when he came home from the GI and deadpanned, "well, basically, i've had my last beer". (that was 1999 before gluten-free beer)

yes, there are emotions and they are legitmiate. I am not a celiac myself but I do feel that as a spouse and probably a celiac mom, I have a pretty good idea at how hard it is.

Heidi

[Nancym]

Today is the first day I haven't woken up queasy in a long time. I went by myself and did some grocery shopping at the health store. I did have a brief pity party for myself when I realized what a change this will be for me. I'm okay this morning but I imagine I will have that feeling again.

Horray! Some of us have some amazing results very quickly. The brain stuff though might take a bit longer.

I know the pity-party thing... heck we all do! But the end results are fantastic.

[MaryAnne729]

Thanks for all the encouragement! I know it will get easier, and I keep telling myself I'll feel better. Knowing i've gotten some improvement helps. What helps even more is all the positive comments I've gotten here and reading other posts. It is very encouraging!!

I think I'll have a little cheese with my whining!!(Oh wait that will not be good!! LOL)

[gfp]

I too am very new to this and after reading lots of info on this site and others I have elected to NOT do endoscope.

1. The chance of them getting sample from a "damaged" spot not that high.

2. What diff will it make, I have went gluten free already- why do more tests.

3. No matter what tests show I will stay gluten free I feel so much better, it has not by any stretch solved all my problems but anything helps.

4. Even if all I am right now is GI if I eat right I will never become a full Celiac- a good thing.

Good luck.

p.s. I have sent sample off to Enterolab for results because I read not everyone tests postive on the blood test either, but yet still have it.

Erm wow.... it took me a page to say that! (which is my way of saying an excellent summary)

Another question, I have two teenagers, 17 & 14, would you have them tested, and would the blood test be positive if they don't have symptoms? I've had vauge symptoms for as long as I can remember, the intermittent D, lactose intolerance off and on, things just started to get out of hand with exhaustion, low iron, sore joints, irritability (actually according to my family I've had that one a long time! LOL) I also have hypothyroidism.

If they were 4 and 7, I might say something different... since blood tests are really notoriously inaccurate in really young kids...

However a 14 and 17 I say the complete oppostite because of a few factors....

The symptoms of celiac do tend to be masked by hormonal changes... joint pain is maked by "growing pains", irritabilty and irrationality .. well they aren't called the terrible teens for nothing... what feels "normal" when your body is basically constantly changing ... ?

the second important reason is if they do start to see you get better and start eating gluten-free then the tests are not going to be worth much unless they then go back onto a deliberate gluten challenge...

I doubt at their age it will be as bad as ravenwoodglass but it is still seriously bad enough that its not something any sane person really wants to do....

Right now presuming they are eating gluten its two little skin pricks and a few cc's of blood...

In a few weeks you will start to appreciate what I mean by the idea of deliberatly eating gluten for a test is something most of us would way rather avoid.... So I'd say go for them now... even if they are a weak negative ...

In a years time your eldest will be making up her own mind and have other concerns... if the test now comes back even weakly +ve you can always push this later... People (including our family members like kids and parents) often do have a aversion to being tested... because they remember perhaps how we stuggled in the 1st weeks/months....

I guess you have to laugh, or cry. Today I just feel very emotional! I guess it's just realizing THIS IS FOR LIFE. It's so overwhelming!

It gets easier... when you were a kid you started having to do your own shoelaces... and that was for life too.

Now you don't even think about it mostly....

This is how being gluten-free becomes.... much as it seems complicated and a lot of hassle it soon becomes routine... I realise that sounds unlikely just after your diagnosed... but it really does... it basically becomes 99% 2nd nature...

I guess I used a driving analogy before....

First time you get in a car, specially if you learn with a stick shift it seems impossible to do all that stuff together... each one seems like it takes your full concentration and then you gotta watch for other cars, pedestrians on top....

After you have been driving for years you don't even conciously think about this stuff that seemed like juggling eggs .. you just do it and concentrate on watching for pedestrians and other cars...

[JodiC]

I have to disagree with this in the strongest possible way....

A biopsy is practically useless for diagnossing celiac, which doesn't mean they don;t have a use but as a diagnositc tool they are worse than useless.

I'm not using worse than useless as a metaphone I mean it quite literally....

Firstly the biopsy only measures the current amount of damage to the villi that are tested. That's it... the isides of your intestine lain out would be about the same size as a tennis court .. each biopsy sample is about the size of a pin head but lets put it into context saying the size of a blade of grass...

Imagine a tennis court of grass with a few "weeds" for the sake of arguament lets say little baby wheat stalks the same sort of size as the grass. (we are still being generous in scale here)...

Now Im going to blindfold you and give you a little periscope..to see through. and at the end of this periscope is a little clamp.... your job is to test some of the samples of the grass and determine if it has wheat growing in it or not...

What are your chances of taking a single sample and it containing wheat?

the answer of course depends how much wheat there is....

lets say its 1:1000 and the tennis lawn also has some tother things growing in it, the odd dandylion or whatever drifted in ton the wind... even with 1:1000 (which is still thousands of wheat shoots) your chance of finding it randomly is slim to non...

If you take 5 samples its better... if you start being able to tell baby wheat from grass then it gets highrer again but its certainly never going to be a reliable method with only 1:1000 being wheat.

Damage to villi can be completely microscopic and not even visble to the naked eye.. so at this point your sampling randomly or looking for areas that might have a different color? look slightly different...

Many people are biopsied and found negative and then a few months later re-biopsied and found positive....

Its all down to a matter of chance and how much damage you have done.

On the other hand you can wait until the guy mows the court and take the cuttings and then test each one or altogether for the presence of wheat...

This is more or less what the blood test does... when a full suite is taken...

The really really bad thing about relying on biopsy is simply that if its negative your options are ... ignore the positive blood test (if you had one), ignore positive response to diet (if you have one) and then set out to eat gluten for an extended period until you actually do enough damage to get a positive result.... and that damage may never repair itself totally.

A gluten challenge aiming for a positve biopsy is fundamentally designed to do enough damage to make the sampling more sucessful....

The second important reason it you can have celiac disease and not even have GI damage.... and this is becoming increasingly the way research shows. Patients with celiac can go on to develop other autoimmune diseases... even without ever showing a damaged villi....

In reality villi get damaged all the time anyway.... just like other parts of the body and they divide and repair as a normal part of life. However unlike for example the cells lining the stomach they are not designed to constantly divide and repair... hence their enforced increased rate of division and repair is what causes the cancer risk....

If you imagine a threshhold where your body repairs villi at a steady rate then significant amounts of damage will only ever be seen once you cross this threshold....

until you do its a case of n are destoyed and n are repaired on a daily basis.. then chance of finding a damaged one in the millions of healthy ones is pretty small...

Some things such as the body being stressed due to illness, pregnancy etc. can act as a trigger... the body goes from a state of damge/repair to the damage being more than can be repaired... or the same thing just happnes slowly as we get older.

Other irritants including h. pylori can upset the balance along with lymes and others...

What is important is once this threshold is crossed, its crossed... pretty much no going back.

For me the endo was necessary as I have no relief of symptoms from the gluten free diet alone. They had to do it to rule out other things, cancer being one of them. In fact the biopsies were only suggestive of celiac and that there could be another problem causing the villious atrophy. Celiac is not the only disease that can cause this in the intestine. I have somewhat positive bloodwork. (IGA only). I will do whatever I have to to make sure I am treating the right thing. My drs have been wonderful and thorough. I wouldn't want a dr that isn't. Be careful what kind of advice you are giving as someone new to the forum may not get the test he or she needs based on your opinions. Not just you, all of us. Also please watch what tone you are writing in. Sometimes it can be quite hurtful

[gfp]

For me the endo was necessary as I have no relief of symptoms from the gluten free diet alone. They had to do it to rule out other things, cancer being one of them. In fact the biopsies were only suggestive of celiac and that there could be another problem causing the villious atrophy. Celiac is not the only disease that can cause this in the intestine. I have somewhat positive bloodwork. (IGA only). I will do whatever I have to to make sure I am treating the right thing. My drs have been wonderful and thorough. I wouldn't want a dr that isn't. Be careful what kind of advice you are giving as someone new to the forum may not get the test he or she needs based on your opinions. Not just you, all of us. Also please watch what tone you are writing in. Sometimes it can be quite hurtful

jodi,

Sorry about the tone ... I did write it in strong tones (so far as you express tone on the internet)...

However that wasn't really directed at you, rather anyone else reading it ....

You Already have your biopsy so it won't make any difference to you and what I was saying is the biopsy is not a good metric for diagnosis... I did say it had other reasons, I just didn't get around to listing them.... (I had intended to...)

My answer was strongly worded because of what you said

Blood work is not enough. An endoscopy is the only way to truly diagnose Celiac and or rule it out.

This simply isn't true ... (your MD may have over stressed but with good reason please keep reading)...

The fact is in many parts of the world the blood test is regarded as definitive... other places still adhere to the biopsy and other places leave it to the individual MD...

Places with social medicine and hence subsidised or free gluten-free food (like the UK) have different reasons for this... there is strong pressure in the UK to reduce the number of diagnoses because you can then get as much gluten-free food as your MD will prescribe for about $180 a year... or free if your over 65....

Italy takes a differnt approach and prefers saving money treating expensive complications that develop so the screen all pre-school children and diagnose from serology. 1:200 people are diagnosed in Italy... screening is the same incidence as the US at 1:133 so almost all celiacs are dignosed and the tail is presumed in the older generation.

Be careful what kind of advice you are giving as someone new to the forum may not get the test he or she needs based on your opinions.

That is always worth bearing in mind...

However it goes both ways....

Many celiacs are diagnosed solely from bloodwork... biopsy however is useful to rule out other possibilities although these don't necassarily themselves rule out celiac disease.

Anyway, here is an interesting paper too...

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15879723&query_hl=4&itool=pubmed_docsum

indicating colonoscopy follow up for patients who do not improve on a gluten-free diet.

Open Original Shared Link

For me one of the major dangers of biopsy is not really the biopsy itself, it is the perception of a large but decreasing majoirty of doctors that the test is in any way definitive in the negative.

This has led quite a few people into a long mis-diagnosis ... I read of one case in Norway on what started with a child...

7 years of gluten challenge/biopsy -ve/rechallenge ....

The blood work was positive throughout... yet the Dr. was searching for that golden test....

7 years of misery for the poor kid .. and in the end he got the +ve biopsy... but 7 yrs??? He could have been gluten-free and living a normal life... had a real childhood, not one of being ill the whole time and not having invasive tests for the satisfaction of the MD... and if this kid were to start his testing today not 15 yrs ago.. he would have been diagnosed by blood work alone..

On top of this there are many many people who's blood work is +ve and then get a -ve biopsy and get told "it can't be celiac disease"...

they get sent home with non specific IBS .. many of them years later retest +ve having spent many miserable years damaging themselves, sometime beyond repair. In many cases their symptoms have become so severe they would be testing positive on most biopsies but because they already have the "certificate" .. of a -ve biopsy they are not retested and not diagnosed with celiac disease.

In some cases a biopsy for diagnosis can be a "white lie" smoke screen too. If a GI beleives you have a decent chance of having cancer (decent being say <50% but higher than 5% ) its not particualrly productive to tell the patient you think there is a good chance they have cancer when that good chance is well less than 50%...

I think its perfectly OK for a MD to stress the diagnostic part for celiac disease in this so long as they don't actually beleive it...

Even if they tell you its a 5% chance .. its not a very nice thing to be waiting on the results for... so leaving the test as part of celiac disease diagnosis is a compassionate thing to do... better to hold off on scaring a patient until it looks like better than a 50% chance IMHO...

The problem is now I said that... and people read it they are going to start thinking if their MD insists on a biopsy they must be testing for cancer... which isn't really true... they can be testing for lots of other stuff too or in a particualr case the actual extent of the damage may be important, specially if you have something else wrong and they are giving you oral pharmacuticals which may not be being adsorbed... or they could just be one of the decreasing majority who still take the definition from when they were at med school...

[JodiC]

As you can see from the vast amount of information available that it is imperative one keeps up on all of the changes. Doctors don't have the time i guess. In the end it is up to the individual to decide when enough is enough. Thank you for your response it does sound like you do your research. You have to have all info available when making such important decisions regarding ones health.

God bless

[JennyC]

For me one of the major dangers of biopsy is not really the biopsy itself, it is the perception of a large but decreasing majoirty of doctors that the test is in any way definitive in the negative.

This is exactly why my son has not been biopsied. I was infuriated by the pediatric gastro my son saw. My son had highly positive tTG, and all other IG were normal, and he also had no "allergies." His pediatrician called me with the results and told me that he has celiac disease, remove gluten from his diet, and see a specialist. I consequently did all those things. At the specialist appointment, I expected him to educate me on celiac disease, offer help with nutrition, and talk to me about diseases related to celiac disease and their prevention. Instead he spent 45 minutes trying to pressure me into a biopsy for my son. He had been off of gluten for one month at that point and had made fantastic improvement. All of his celiac symptoms were gone and he had gained 3 pounds! In the doctor's opinion celiac disease is not a spotty disease, and if the single biopsy does not show that he has celiac disease, then he doesn't have it. Then the blood work would be considered wrong. At that point I could go home and order pizza. Needless to say I have not gone back. I have scheduled an appointment for a second opinion with another pediatric gastro, and if that doesn't work maybe I'll seek out an allergist. After that...I'll just get follow up testing through his pediatrician. I am mainly concerned with checking him for diabetes annually and also testing his tTG levels.