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1 Week Gluten. Enough For Positive Biopsy?

MELINE

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

Probably, but to me this is a question (in general) would a Dr. be so lax about a potentially damaging test if they were performing it on themselves or their mother or daughter?

Most people who had biopsies did not get sick from them. My concern is, that she shouldn't be glutening herself for nothing beforehand.

I don't think gfpaperdoll meant the biopsy itself, more the gluten needed.

My concern is still what if its negative after a week (as is likely) .. when to stop?

Its not about the dr. selling stuff, for me its when do we stop ? Meline has already tried gluten, gotton sick ... so if the biopsy is negative what does it mean? Unfortunately inmany cases it means either 1/ the Dr will not diagnose celiac or 2/ The doctor will keep testing ...

The largest chance after 1 week by a long way is a negative ... but this negative doesn't prove anything ...

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MELINE Enthusiast
MELINE
Posted
  • Author
My concern is still what if its negative after a week (as is likely) .. when to stop?

Its not about the dr. selling stuff, for me its when do we stop ? Meline has already tried gluten, gotton sick ... so if the biopsy is negative what does it mean? Unfortunately inmany cases it means either 1/ the Dr will not diagnose celiac or 2/ The doctor will keep testing ...

The largest chance after 1 week by a long way is a negative ... but this negative doesn't prove anything ...

gfp you are right. But thanks god my doc is clever enough to know that even if it is negative I am a celiac because of my symptoms so he is not gonna be testing me for the rest of my life.......He just said that if I want I could have some gluten just untill Friday (biopsy day).....His opinion was that even with 2 days gluten the biopsy would be positive...(I understand that this is probably wrong because ALL of you keep telling me it is not possible) so he said I could have gluten for 2 days or more if I can. IF I CAN. I asked him -on purpose- what we will do if the biopsy is negative and he said that we will stick on the gluten-free diet and the celiac diagnosis beacuse of the extremely severe symptoms and their immediate dissapear (spelling???) after the gluten-free diet.

so gfp I've already stopped.....you see my face has a really bad ekzema everytime I get glutten (within 1 hour the rush is starting) so I am not gonna get any uglier. No more tests for me.....

Let's see what the biopsy will tell us. I will have it anyway cause my intestine hurts and I have nausea even after 4 months of no gluten so we have to see what is going on in there. But no more gluten for me.

Thank you for your post

MELINE Enthusiast
MELINE
Posted
  • Author
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

nora your links are very helpful. I am checking them right now. I will print them and discuss them with my doC. He is a very concerning man and he is taking all the time to listen to me. I have also heard of the capsule and I am going to ask him if we could do that. Thank you so much.

nora-n Rookie
nora-n
Posted

I tried enrolling for a trial of the activated T cell test, but I did not get enrolled. They only took in 28 persons. ...

I had a skin biopsy for DH, Dermatits herpetiformis, which is a for of celiac but in the skin. The antibodies are called ttg3; the celiac antibodies are ttg2 so it is a tiny bit different from celiac but not much. It was taken before christmas and I am still waiting for the results. So immunofluorencense tests are a bit time-consuming. I severely doubt they do immunofluorescence in gut biospies, just the microscopic examinations, and the pathologist must be very experienced and know what to look for. And celiac damage is often patchy...

From what I read, the capsule endoscopy done privately was not so expensive here.

nora

  • 2 weeks later...
Annaem Enthusiast
Annaem
Posted

Their is a blood test which tests your antibodies that will be high because of eating gluten. Your body has an autoimmune response and these antibodies go up. Then there is a genetic test you can do that checks your genes. The one i did was from enterolab which online. It is a cheek swab. And one week is not enough!!! but if your reaction is sooo strong i think you know yourself that you must be celiac and there is probably no point in putting yourself through the suffering of eating gluten and doing a biopsy. See if you can do the gene test and the antibody test. You are making me more and more nervous about visiting greece. I am disappointed by the lack of education....

Annaem Enthusiast
Annaem
Posted

Their is a blood test which tests your antibodies that will be high because of eating gluten. Your body has an autoimmune response and these antibodies go up. Then there is a genetic test you can do that checks your genes. The one i did was from enterolab which online. It is a cheek swab. And one week is not enough!!! but if your reaction is sooo strong i think you know yourself that you must be celiac and there is probably no point in putting yourself through the suffering of eating gluten and doing a biopsy. See if you can do the gene test and the antibody test. You are making me more and more nervous about visiting greece. I am disappointed by the lack of education....

gfjayhawk Rookie
gfjayhawk
Posted

I was gluten-free for two months, then went back on gluten for a week right before my biopsy. In my case, there was a lot of visible damage, and my biopsy came back positive. I had severe malabsorption problems, so I suspect that I still had damage from my pre-gluten-free days. Every person is different, so it's hard to say what your biopsy will show. If you're confident that gluten is causing you problems, it's best to go back on a gluten-free diet after the biopsy, regardless of what the biopsy results are. Unfortunately, false negatives aren't uncommon even with the biopsy, so you have to let your symptoms be your guide. Good luck!

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MELINE Enthusiast
MELINE
Posted
  • Author
. You are making me more and more nervous about visiting greece. I am disappointed by the lack of education....

sorry to say that, I am not trying to accuse ANY nation but my doc studied in the USA......It is not a matter of nation, it is a matter of college and of student. I do not mean to accuse ANYONE please believe that. My best friend came from UK with lupus, no one could diagnose her there for 8 months and the day she arrived in Athens she was diagnosed and she was so close to death. It does not have to do with nations.......

MELINE Enthusiast
MELINE
Posted
  • Author
I was gluten-free for two months, then went back on gluten for a week right before my biopsy. In my case, there was a lot of visible damage, and my biopsy came back positive. I had severe malabsorption problems, so I suspect that I still had damage from my pre-gluten-free days. Every person is different, so it's hard to say what your biopsy will show. If you're confident that gluten is causing you problems, it's best to go back on a gluten-free diet after the biopsy, regardless of what the biopsy results are. Unfortunately, false negatives aren't uncommon even with the biopsy, so you have to let your symptoms be your guide. Good luck!

.......And that is exactly what I am going to do!!! Thanks for the good luck, I 've done my biopsy and I am waiting for the results but no gluten for me for the rest of my life!!! That is a promise to my self. no more ekzema on my face.....You are right, every person reacts in a different way. Your answers are helping me a lot, and also they are convincing my mom that even with a negative biopsy I may be a celiac.......thank you so much

Nora

Thanks again for the information....You know so many things and details on the tests...I'll use the infomation you are giving me

Annaem Enthusiast
Annaem
Posted

Yes you are right. When you have this problem you become afraid of travelling. Leaving the security of what you know. Maybe with your advice i will feel more comfortable.

MELINE Enthusiast
MELINE
Posted
  • Author
Yes you are right. When you have this problem you become afraid of travelling. Leaving the security of what you know. Maybe with your advice i will feel more comfortable.

:)

susieg-1 Apprentice
susieg-1
Posted
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???

I think it is more important to know that your villi are repairing on gluten-free diet so why not check villi status on gluten-free diet as indication that you are healing? Also if you have skin reactions and Dr needs a positive dx skin biopsy of your current rash can make determination without having to subject your body to repeated gluten exposure. The negative effects that gluten has on your body are not worth intentionally ingesting gluten!

nora-n Rookie
nora-n
Posted

I read in the DH folder that a biopsy for Dh should be taken during an outbreak. Does your rash look like DH?

MELINE Enthusiast
MELINE
Posted
  • Author
I read in the DH folder that a biopsy for Dh should be taken during an outbreak. Does your rash look like DH?

Hi

Well....No it does not look like DH....It's just that when I get gluten there is an ekzema in the corners of my mouth. It is red, itchy but no blisters and it is just around my mouth.The more I get glutened the worst it becomes and it hurts a lot (I can hardly speak after 3 days of gluten). It does not look like DH......(I guess). Doc did not seem to worry about that cause it stops growing immediately after stopping gluten.

MELINE Enthusiast
MELINE
Posted
  • Author
I think it is more important to know that your villi are repairing on gluten-free diet so why not check villi status on gluten-free diet as indication that you are healing? Also if you have skin reactions and Dr needs a positive dx skin biopsy of your current rash can make determination without having to subject your body to repeated gluten exposure. The negative effects that gluten has on your body are not worth intentionally ingesting gluten!

Yes you are so right...But you see I would like to have a proof that I am not crazy. It is very hard for my family to accept that my nausea, my eczema, my headache and my bloating has to do with bread...Of course nothing will change even if the biopsy is negative.I'll stick to the gluten-free diet or sure I just wanted that proof. The rush on my face does not look like DH. It is just an ekzema (just.....!!)

Annaem Enthusiast
Annaem
Posted

I get patches of eczema too and cold sores on my mouth when i eat gluten. So youre not the only one.

MELINE Enthusiast
MELINE
Posted
  • Author
I get patches of eczema too and cold sores on my mouth when i eat gluten. So youre not the only one.

really???? I actually thought I was the only one!!!!!!!!!!!!!!!!!!!!!!!!!!!!! The ekzema is in the corners of my mouth (not inside, outside) and inside my mouth I get some things that I cannot descibe in english......"cold sores" I do not know the meaning of these words but I guess we have the same thing. Not so annoying since it immediately stops when I go gluten-free.

:D

nora-n Rookie
nora-n
Posted

I had those cold sores too, funny. went away after going gluten-free. But they definitely looked and felt like cold sores.

Those things in the mouth are not so uncommon caused by gluten.

nora

Ivanna44 Apprentice
Ivanna44
Posted
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???

Good Luck MELINE

I hope this self gluttening gives you the results you want. I think in your case as your family does NOT seem to support your gluten free lifestyle (from what I've read). this would be the "proof" you need to get them to Understand. Although my doc. took me by word of mouth. There was a part of me, (despite the illness it would cause) that wished she had sent me to a gasterologist for further testing. Again, just so people take it more serious. Its kinda like with some people you need a piece of paper in front of them saying > Gluten makes this person very ill. This person must be on a gluten-free diet for life.

It looks also like it is the same in the States. Having that celiac diagnoses, the same in Canada, gives you a tax break. You are credited the extra funds needed to s upport the extra cost of the foods. But, again you must have a "celiac positive diagnoses" and a doc. willing to fill out a T1 form to support it.

I don't know about the Greece rareity angle. I'm British, full breed so to speak, both parents british and I was born there. Came to Canada at age 2. But, I have read a number of places that in place like Britian, celiac disease is more recognized and tested for in general.

Which is odd, why they don't test for it as much in Canada or the STates, when you factor in that most people here, have European ancestoral roots. Cost most likely being the reason why. :angry:

Anyhow, MELINE, I hope you get the results you are looking for. It is nice that you have doc. that seems to at least be listening to you.

hugs

MELINE Enthusiast
MELINE
Posted
  • Author
Good Luck MELINE

I hope this self gluttening gives you the results you want. I think in your case as your family does NOT seem to support your gluten free lifestyle (from what I've read). this would be the "proof" you need to get them to Understand. Although my doc. took me by word of mouth. There was a part of me, (despite the illness it would cause) that wished she had sent me to a gasterologist for further testing. Again, just so people take it more serious. Its kinda like with some people you need a piece of paper in front of them saying > Gluten makes this person very ill. This person must be on a gluten-free diet for life.

It looks also like it is the same in the States. Having that celiac diagnoses, the same in Canada, gives you a tax break. You are credited the extra funds needed to s upport the extra cost of the foods. But, again you must have a "celiac positive diagnoses" and a doc. willing to fill out a T1 form to support it.

I don't know about the Greece rareity angle. I'm British, full breed so to speak, both parents british and I was born there. Came to Canada at age 2. But, I have read a number of places that in place like Britian, celiac disease is more recognized and tested for in general.

Which is odd, why they don't test for it as much in Canada or the STates, when you factor in that most people here, have European ancestoral roots. Cost most likely being the reason why. :angry:

Anyhow, MELINE, I hope you get the results you are looking for. It is nice that you have doc. that seems to at least be listening to you.

hugs

yes....my family does not support the gluten-free diet and the rest of the world here has neer heard of celiac since only 1 in 11.000 greeks is celiac....

And you are so right...it seems like we need to have the paper to prove it.....(and the extra funds for the special food we need...)

Any way, now my biopsy is done and I am waiting for my results, but no more gluten for me , I promise my self!!! my doc is listening to me thanks god. you are right, it is important.

Thank you !!! :rolleyes:

  • 2 weeks later...
jeanbean Newbie
jeanbean
Posted

I was one month off gluten and then had my biopsy, and it still came back positive for celiac.

My villi were "blunted", which the enterologist said were not as bad as flat villi. I asked her if it could have been due to my starting the diet before my biopsy and she indicated it was possible. My blood test results showed very high antibodies, so I was expecting completely flat villi.

So all this to say that there was some healing in the first month, but still a positive biopsy for me.

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