1 Week Gluten. Enough For Positive Biopsy?

[MELINE]

Hello everyone...

my new doctor said I need to have a biopsy. I told him I am gluten free for about 4 months and he said that even with 1 week of gluten we could see the damage and the biopsy would be positive. so he asked me to gluten my self until next friday. In some posts I've read that you need to gluten yourself for months to have a positive biopsy....(thanks god he is clever enough to understand that my symptoms alone are enough to prove celiac, but he wants to see the damage in my villy)

any ideas??? a week is enough???

[happygirl]

https://www.celiac.com/articles/12/1/How-lo...gful/Page1.html

Many would say that no, 1 week is not long enough. It greatly incrases the risk of a false negative. You could test positive, but if you get a negative, it isn't as accurate.

If you choose to have the biopsy done, ensure that your dr. takes 4-6 biopsies (or more). Even when eating a long term gluten diet, celiac disease is still a patchy disease and can be easy to miss.

You may also want to ask for genetic testing, as well.

[kbtoyssni]

It's probably not long enough. Do you really think you can re-create all the damage you did to your villi in just one week? If I were you I'd politely tell my doc that I would not be having a scope.

[MELINE]

thank you happy girl

the article is confriming what you are saying....I 'll give it a try even wih just a week (It is impossible to eat gluten for more than a week...The immediate reaction is ekzema on my face...)

Also I will ask for that genetic test you said (is it a blood test or something else?)

[MELINE]

It's probably not long enough. Do you really think you can re-create all the damage you did to your villi in just one week? If I were you I'd politely tell my doc that I would not be having a scope.

.......I don't know kbtoyssni....To tell you the truth he believes that he can confirm celiac even with 2 days of gluten.....I think I will try it....

[gfp]

.......I don't know kbtoyssni....To tell you the truth he believes that he can confirm celiac even with 2 days of gluten.....I think I will try it....

Then he's an ass!

Even if you eat gluten for 6 months it can't guarantee the biopsy will be positive.

I think the fist explanation makes more sense ..

but he wants to see the damage in my villy)

So I would carefully consider this... Why does he want to see damage?

What you want to ask yourself is what if its not positive after a week? Will you continue until it is?

I read one case study where a Dr. took a 7 year old child and repeatedly subjected them to a gluten challenge.

The result was that he eventually got a positive biopsy from a 14 yr old teenager !!!

Some poor kid lost 7 yrs of their life to experimentation by a mad doctor who was just using the kid for experiments.

This makes my blood boil ...

Do you think your Dr. would poision himself just so he could see the damage?

Next time you see him take in a bottle of caustic soda and tell him you'll take the biopsy when he drinks the caustic.

If he asks why tell him you're curious and you want to see the damage it does to his digestive system!

[MELINE]

Then he's an ass!

Even if you eat gluten for 6 months it can't guarantee the biopsy will be positive.

I think the fist explanation makes more sense ..

So I would carefully consider this... Why does he want to see damage?

What you want to ask yourself is what if its not positive after a week? Will you continue until it is?

I read one case study where a Dr. took a 7 year old child and repeatedly subjected them to a gluten challenge.

The result was that he eventually got a positive biopsy from a 14 yr old teenager !!!

Some poor kid lost 7 yrs of their life to experimentation by a mad doctor who was just using the kid for experiments.

This makes my blood boil ...

Do you think your Dr. would poision himself just so he could see the damage?

Next time you see him take in a bottle of caustic soda and tell him you'll take the biopsy when he drinks the caustic.

If he asks why tell him you're curious and you want to see the damage it does to his digestive system!

......he wants to see damage because in greece celiac is a very unusual thing and he wants to be sure. I had a test for food intolerances and that made me exclude from my diet about 40 kinds of food. He said that these tests are not reliable and he needed to see my villy in order to have a scientific opinion about gluten, lactose and all the other intolerances. He asked me to gluten my self IF i want / can just to be 100% sure about celiac.But in case that I cannot do that, or in case that I do that and still my biopsy is negative he says that my symptoms alone describe celiac and we will continue the life time gluten-free diet...I guess I will only do it for 4-5 days.I think it is not such a big problem to have some bread for 4 days.....

[Ursa Major]

Meline there is no way in the world that a week on gluten will allow you to have a positive biopsy. It is a useless thing to do, and the only thing it will achieve is to make you ill, and your eczema to flare up.

If your doctor is telling you that you should be on a gluten-free diet no matter what, why don't you just tell him that is what you will do, and never mind damaging your intestines just to satisfy his curiosity?

I highly doubt that celiac disease is so rare in Greece. I think it is more likely that Greek doctors are too ignorant to diagnose celiac disease when they see it (just like many doctors here, of course).

They have been taught it is rare, so that is what they believe and won't test people who have all the symptoms.

[happygirl]

Yes, the genetic test is a blood test. Ask to be tested for these two genes: HLA DQ2 and HLA DQ8.

[kenlove]

i'm curious now,

if it takes 2 years or less for our vili to heal, wouldnt a biopsy show some damage even after a short gluten-free period?

I dont know how the medical stuff works. When I had my biopsy almost 2 years ago they really didnt explain the process well.

ken

[Ursa Major]

Yes, the genetic test is a blood test. Ask to be tested for these two genes: HLA DQ2 and HLA DQ8.

Just realize that even though these two are the 'official' celiac disease genes over here in America, there are others that are identified in different countries. And that there are biopsy diagnosed people with celiac disease who don't have either of those genes.

So, even those gene tests aren't foolproof.

[Ursa Major]

i'm curious now,

if it takes 2 years or less for our vili to heal, wouldnt a biopsy show some damage even after a short gluten-free period?

I dont know how the medical stuff works. When I had my biopsy almost 2 years ago they really didnt explain the process well.

ken

Ken, different people heal at different rates. Children and young people appear to heal much quicker than older people on average.

Some people would still show some damage after several months, or even a year or two. While others heal completely within weeks.

Meline is young, and I have my doubts that damage that is severe enough to be considered celiac disease damage will still be found in her.

Also, of course, it depends on the degree of damage. It is all pretty tricky, really. And then on top of the time and degree of damage problems comes, that many doctors haven't got a clue on how to interpret the results (including GIs, who are supposed to be the specialists).

If her doctor is convinced that she should be gluten-free, judging by her dietary response, why does he then want her to make herself ill again to do a biopsy? It sounds like he has never diagnosed anybody with celiac disease before, and is just curious to see what it looks like. NOT a good enough reason to purposely make somebody sick!

[kenlove]

Thanks much Ursa,

I know that in the US there are advantages to being "officially" diagnosed. Tax and food cost deductions mainly.

Since we are all so different, it is interesting to see how things work. Visiting with man Italian companies here in Japan, everyone knew about celiac but in the US very few do.

I suspect even fewer in Greece and virtually know one in Japan although growing wheat allergies here have started to make people more aware there is a problem.

I don't trust most doctors either.

take care

Ken, different people heal at different rates. Children and young people appear to heal much quicker than older people on average.

Some people would still show some damage after several months, or even a year or two. While others heal completely within weeks.

Meline is young, and I have my doubts that damage that is severe enough to be considered celiac disease damage will still be found in her.

Also, of course, it depends on the degree of damage. It is all pretty tricky, really. And then on top of the time and degree of damage problems comes, that many doctors haven't got a clue on how to interpret the results (including GIs, who are supposed to be the specialists).

If her doctor is convinced that she should be gluten-free, judging by her dietary response, why does he then want her to make herself ill again to do a biopsy? It sounds like he has never diagnosed anybody with celiac disease before, and is just curious to see what it looks like. NOT a good enough reason to purposely make somebody sick!

[MELINE]

Meline there is no way in the world that a week on gluten will allow you to have a positive biopsy. It is a useless thing to do, and the only thing it will achieve is to make you ill, and your eczema to flare up.

If your doctor is telling you that you should be on a gluten-free diet no matter what, why don't you just tell him that is what you will do, and never mind damaging your intestines just to satisfy his curiosity?

I highly doubt that celiac disease is so rare in Greece. I think it is more likely that Greek doctors are too ignorant to diagnose celiac disease when they see it (just like many doctors here, of course).

They have been taught it is rare, so that is what they believe and won't test people who have all the symptoms.

......guess you have a point....unfortunatelly doctors in greece are (sometimes) ignorant....i mean really ignorant....but it is a fact that greece has the lowest percentage of celiacs in europe. There is an article that gives a rate of 1 in 11.000 people...anyway....

you know what the problem is.....I just don't know who to trust.....My new doctor studied in Americe and worked there for 20 years. And here he comes and tells me that in my condition and according to my case he thinks that even with 2 days of gluten he is going to find it.....

Who can I trust?? I wish I was a doctor and I could be able to see the right thing to do....

Ken is right...I would really like to have it oficially (how is that word spelled....double f..?)....It is also the fact that I don't tnink that I will make such a huge damage just with 4 days..But on the other side I am not a doctor....

The biopsy seems to be essential cause he said something about lymphoma (after 4 months gluten-free i still have nausea) and he scared me to death but I hope everything will be ok....

[kenlove]

Hi Meline

I think already you know having no gluten is healthy for you no matter what doctor says.

Having it as an offical diagnoses would be nice and if this doctor will say that based on biopsy then its good. You shoudl not stay in pain and with trouble more thana you have too. NO matter what you know what you have to do to feel good. Only 1 in 11,000

means your a very rare person! Your boyfriend is very lucky!

take care

......guess you have a point....unfortunatelly doctors in greece are (sometimes) ignorant....i mean really ignorant....but it is a fact that greece has the lowest percentage of celiacs in europe. There is an article that gives a rate of 1 in 11.000 people...anyway....

you know what the problem is.....I just don't know who to trust.....My new doctor studied in Americe and worked there for 20 years. And here he comes and tells me that in my condition and according to my case he thinks that even with 2 days of gluten he is going to find it.....

Who can I trust?? I wish I was a doctor and I could be able to see the right thing to do....

Ken is right...I would really like to have it oficially (how is that word spelled....double f..?)....It is also the fact that I don't tnink that I will make such a huge damage just with 4 days..But on the other side I am not a doctor....

The biopsy seems to be essential cause he said something about lymphoma (after 4 months gluten-free i still have nausea) and he scared me to death but I hope everything will be ok....

[MELINE]

Hi Meline

I think already you know having no gluten is healthy for you no matter what doctor says.

Having it as an offical diagnoses would be nice and if this doctor will say that based on biopsy then its good. You shoudl not stay in pain and with trouble more thana you have too. NO matter what you know what you have to do to feel good. Only 1 in 11,000

means your a very rare person! Your boyfriend is very lucky!

take care

I am not gonna stay in pain more than I have too, dont' worry

haha hahahahahahaaa.....I am a rare person Ken!!!! And YES he is lucky (and me too...)

Leave tokyo and come here Ken!!! Tell me is there any other country in the world where people go out Tuesday night, 2:30 o'clock after midnight to go have fun in bouzoukia (I guess you know what this word means) and dance belly dance on the tables????? Nope.....I am leaving now....

Take care (that is something you always say to me and it really makes me feel better!)

[Ursa Major]

You know, just a few years ago doctors claimed that celiac disease was very rare here in America as well, like 1 in 10,000 or so. Then they decided that it was more like 1 in 300, and now they finally have it right by saying about one in 100 (and that doesn't include the people who 'only' have gluten intolerance, it is MUCH higher if you include them).

They are probably saying that it is so rare in Greece because nobody, even the doctors, has a clue about it, and they are diagnosing people with celiac disease with IBS or Crohn's instead. Or fibromyalgia, multiple sclerosis or neuralgies if the problem is nerve damage. Or depression, schizophrenia, ADHD or bi-polar if it mostly attacks the brain.

Here they are very slowly cluing in. Italy has understood (sort of) about celiac disease for a while. They will test ALL school aged children (it is mandatory) for celiac disease before they are allowed to start grade one.

Rather than trying to eat gluten for a week, you might as well just have the biopsy as soon as possible. If there is still enough damage to see that it is celiac disease, then you have the diagnosis that nobody will question. Even though it is not very likely that you have developed any lymphoma at your age yet, if you are concerned about it, you might as well have them have a look.

Eating gluten for a few days is useless, though. If there is still enough damage to diagnose, fine, if not, eating gluten for a week won't make a difference.

[MELINE]

You know, just a few years ago doctors claimed that celiac disease was very rare here in America as well, like 1 in 10,000 or so. Then they decided that it was more like 1 in 300, and now they finally have it right by saying about one in 100 (and that doesn't include the people who 'only' have gluten intolerance, it is MUCH higher if you include them).

They are probably saying that it is so rare in Greece because nobody, even the doctors, has a clue about it, and they are diagnosing people with celiac disease with IBS or Crohn's instead. Or fibromyalgia, multiple sclerosis or neuralgies if the problem is nerve damage. Or depression, schizophrenia, ADHD or bi-polar if it mostly attacks the brain.

Here they are very slowly cluing in. Italy has understood (sort of) about celiac disease for a while. They will test ALL school aged children (it is mandatory) for celiac disease before they are allowed to start grade one.

Rather than trying to eat gluten for a week, you might as well just have the biopsy as soon as possible. If there is still enough damage to see that it is celiac disease, then you have the diagnosis that nobody will question. Even though it is not very likely that you have developed any lymphoma at your age yet, if you are concerned about it, you might as well have them have a look.

Eating gluten for a few days is useless, though. If there is still enough damage to diagnose, fine, if not, eating gluten for a week won't make a difference.

What you are saying might be true ursa major....I have no doubt that doctors in greece are diagnosing whatever they want...Any way, it still is a fact that very few people are aware of celiac....You say 1 week will not make a difference....I am so confused.....The truth is you all keep telling me not to do it, and that it will not actually help the biopsy....I guess the right thing to do is call him back again and discuss it with him. He seems to be very understanding.

I hope there is no lymphoma (did not know it had something to do with age, but that is good news..). Yes, he is actually going to check it out (just in case.....)

The biopsy is for next friday....I'll let you know the results. Thank you for your response.

[gfpaperdoll]

double what GFP said & I also agree with Ursa.

Bottom line is that the doctor knows nothing about celiac disease. You are a willing guinea pig & he will make some money off the biopsy. No harm done - because he is not the one that will get sick - you will, but not to worry, as far as the doctor is concerned, because he has medicine to fix up any little problem that you might have... and if you have any little side effects from the medicine, he has medicine for that also...

[Ursa Major]

Meline, what I am saying is, if you are concerned about lymphoma (and the risk is actually very small at your age), a biopsy is fine to do. Just don't bother glutening yourself for it, as it won't make any difference to what it will show.

Many of us here were sick from celiac disease or gluten intolerance for many, many years (fifty years for me), before being diagnosed (or self diagnosed). It is NOT common to get lymphoma until over the age of at least fifty, or even sixty if you are undiagnosed.

Your twelve years were long, painful years I am sure, but are nothing timewise in comparison. It is extremely unlikely that your ongoing problems are caused by lymphoma.

gfpaperdoll, there is no need to make Meline any more anxious than she already is by comments like the above. Most people who had biopsies did not get sick from them. My concern is, that she shouldn't be glutening herself for nothing beforehand.

And I don't think her doctor purposely treats her like a guinea pig, he is just ignorant, but he means well.

[MELINE]

ursa major thanks again.You are making me feel better. I hope everything is ok with me...Thank you for the information about lymphoma and for the support.

gfpaperdoll I understand your frustration...But I don't feel like you do....I talked to my doctor and he said that IF I want we can do it. If I don't want it, we still have the biopsy but without glutening myself. I don't feel like he is taking advantage of me, but you sure have a point. There must be plenty of doctors that think like the way you are describing.

[nora-n]

Actually, there is a test they can do after three days back on gluten, but it is experimental:

Open Original Shared Link they look for freshly activated T cells. There should be more articles about it by now.

Another questin is, do the pathologists there know what to look for? I have read on these forums before, and some pathologists will only diagnose celiac if all the vii are missing. There are new criteriae now, and one only needs villi blunting and somthing with the crypts. And, some pathologists diagnose celiac if there are more t 20 lymphocytes per 100 now, the old standard is either 30, or they did not even look for them, just absence of villi....

There also means to look for antibodies in the biopsy samples, like testing for them, and looking for antiboides by immunofluorescence, but this is only done in research labs sometimes, and is not part of a routine biopsy test for celiac.

Open Original Shared Link you can spend some time looking around in pubmed (=medline) maybe you find some more things about celiac (or coeliac, two spellings) and mediterranian.

Capsule endoscopy might be better to find out what is really going on (there are seven meters of intestines one cannot see via endoscopy and coloscopy, all the space in between) Open Original Shared Link and I have read postings on a forum where someone paid privately for capsule endoscopy after several normal endoscopies that showed nothing, and she was diagnosed celiac after the capsule endoscopy.

nora

[kenlove]

Well dont be surprised if we show up in Athens one of these days soon! Ever since I was a small boy I always wanted to go to Greece but it is one of the few countries I've not visited yet. I know within the next few years we will be there!

By that time I hope you know many gluten free places to eat <G>

Also to have retsina <G>

hope you had fun at bouzoukia

take care

ken

I am not gonna stay in pain more than I have too, dont' worry

haha hahahahahahaaa.....I am a rare person Ken!!!! And YES he is lucky (and me too...)

Leave tokyo and come here Ken!!! Tell me is there any other country in the world where people go out Tuesday night, 2:30 o'clock after midnight to go have fun in bouzoukia (I guess you know what this word means) and dance belly dance on the tables????? Nope.....I am leaving now....

Take care (that is something you always say to me and it really makes me feel better!)

[MELINE]

Ok so I will not do it. I started having some gluten for the biopsy and with a tiny slice of bread within 5 hours nausea, ekzema and diarhea started. So I will just go have that biopsy and see the results without any more gluten for the rest of my life I promise that to myself.

Hi ken......bouzoukia was great.....Hope you finally make that trip. I am going to sleep. Not in a very good mood today (and probably too many spelling mistakes for me today....I hope my writing makes sense)

[kenlove]

Glad bouzoukia was great and hope your feeling better tomorrow. Your English is great and spelling better than mine!

Just feel better soon!

ken

Ok so I will not do it. I started having some gluten for the biopsy and with a tiny slice of bread within 5 hours nausea, ekzema and diarhea started. So I will just go have that biopsy and see the results without any more gluten for the rest of my life I promise that to myself.

Hi ken......bouzoukia was great.....Hope you finally make that trip. I am going to sleep. Not in a very good mood today (and probably too many spelling mistakes for me today....I hope my writing makes sense)