Is Biopsy Always True?

[MELINE]

Hello everyone...

I could use some help here...I had a test for food intolerances and the results were talking about 40 food intolerances and gluten was one of them.This test was not by a doctor but by a homopathetic center (is that the word??) and many doctors don't think that it is reliable. I started going gluten-free and all the symptoms disappeared.Eating gluten by accident gave me the whole package back. I started feeling again REALLY exhausted,having severe headache,eczema in my mouth, trouble sleeping, joint pain, stress, huge belly and diarrhoea. Once I stopped, the package disappeared in 3 days.....OK....Now I have a problem with my parents......They can't understand why I am 29 years old and the symptoms came up so intense now, while I was eating huge amounts of bread for so many years, and they want me to go have the biopsy (which is smth I have to do since I have severe intestine pain) and they keep telling me that it is all in my head cause a doctor once told them that the tests for food intolerances are not reliable........I am not crazy.....I am eating bread and I am having eczema immediately....I don't know why is it so hard for someone to believe that....

So the question is.....Is the biopsy test reliable or is there any chance that I am celiac and the biopsy will not confirm that???? my doctor says that there is no blood test for celiac....but in your posts I am reading that there is one.....Are the doctors here so ignorant??? maybe....

I would appreciate your help..

[kenlove]

HI Meline

I know others will give you the name of the blood tests you should tell the doctors to give you if they can.

I know its not just Greece but even in Hawaii they did not know about the blood tests for celiac. I had to find out about them on the forum and from my old doctor in Chicago.

The blood tests were done within a few days of the biopsy since I was so sick and in the hospital. At that time I was too weak even to walk. Finally the biopsy confirmed the celiac.

Since everyone is different, Its hard to say what they may find in you but we know you have some problems and you have to make sure they find the cause so that you can find the cure.

I hope you are feeling better soon

ken

[Guest j_mommy]

1) switch Dr's...if they don't know there are blood tests, then he/she is not the person you want to be seeing.

2) Biopsies are considered the glod standard for testing celiac. However if you have been gluten free for awhile they will nto be as reliable...you need to be eating gluten for them to be true. How long have you been gluten-free?

3)It's not in your head!!!! I ate a ton of bread before I found out I had celiac(had all the symptoms but ofcource it's not something that was brought up in conversation) and everyone was suprised I had celiac.My mom thought and still does that it's in my head.

For some, the dietary response is enough and they continue on a gluten-free diet. I needed/wanted the testing done.

Good Luck!

[MELINE]

  kenlove said:

HI Meline

I know others will give you the name of the blood tests you should tell the doctors to give you if they can.

I know its not just Greece but even in Hawaii they did not know about the blood tests for celiac. I had to find out about them on the forum and from my old doctor in Chicago.

The blood tests were done within a few days of the biopsy since I was so sick and in the hospital. At that time I was too weak even to walk. Finally the biopsy confirmed the celiac.

Since everyone is different, Its hard to say what they may find in you but we know you have some problems and you have to make sure they find the cause so that you can find the cure.

I hope you are feeling better soon

ken

I am ok now ken thank you for your immediate response! I'll ask for the name of the blood tests. still in tokyo? have fun!

[MELINE]

  j_mommy said:

1) switch Dr's...if they don't know there are blood tests, then he/she is not the person you want to be seeing.

2) Biopsies are considered the glod standard for testing celiac. However if you have been gluten free for awhile they will nto be as reliable...you need to be eating gluten for them to be true. How long have you been gluten-free?

3)It's not in your head!!!! I ate a ton of bread before I found out I had celiac(had all the symptoms but ofcource it's not something that was brought up in conversation) and everyone was suprised I had celiac.My mom thought and still does that it's in my head.

For some, the dietary response is enough and they continue on a gluten-free diet. I needed/wanted the testing done.

Good Luck!

1) you are right about the doctor thing.....I already have an appointment on friday with a new one.....let's hear what he has to say...

2) I've been gluten free for 3 months but had an accident last week. I kept eating for 3 days a "safe" bread that finally turned out to be full of gluten (dinkel-spelt) and that thing gave me all my symptoms back. But now I am ok just some nausea and a severe pain in my intestine (which is frigthening me A LOT).I am really scared of what that might be.. I didn't now I had to eat gluten for the test....I'll do that if I have to.

3) Nice to hear that I am not the only one that gets the "in your head" moto.....

Dietary response is more than convincing for me....My face used to look like I had a fight in the streets and all that because of the eczema...that like magic stopped the same dayI went gluten-free (along with ALL the other symptoms). Well ok but try to explain to a greek mom that you can't eat bread.....Sad story....I don't know which one is better....Feeling sick or having to convince her (just kidding....)

Thank you so much for the information. (p.s. what is the meaning of the word "glod"???? you said "glod" standard and I can't find the translation for that....guess you just want to say it is the best for the occasion?)

[psawyer]

A positive biopsy definitely confirms celiac disease, but a negative biopsy proves nothing.

[larry mac]

  MELINE said:

.....I am eating bread and I am having eczema immediately....

I'm not an expert on DH, but it sounds like you may have it.

best regards, lm

[MELINE]

  psawyer said:

A positive biopsy definitely confirms celiac disease, but a negative biopsy proves nothing.

I understand.....so there is a chance you are celiac and have a negative biopsy....too bad for me. Maybe I have to gluten myself in order to have a positive biopsy as j mommy said....

[MELINE]

  larry mac said:

I'm not an expert on DH, but it sounds like you may have it.

best regards, lm

I think that too, but seems like everyone else thinks I am just having a hard time and it is all a psychological theme... Any way, my body, my decisions, my moves. Just can't trust anyone else..

[Gwen B]

  MELINE said:

Thank you so much for the information. (p.s. what is the meaning of the word "glod"???? you said "glod" standard and I can't find the translation for that....guess you just want to say it is the best for the occasion?)

I think there was a typing error and that an endoscopic biopsy is the gold standard for diagnosis of celiac. If you have exzema like blisters you may have dermititis herpeteformis (not sure I spelt it correctly) which is related to celiac but tested for next to an active blister, and interpereted by an experienced celiac Dr. from what people have said on this forum.

The blood tests you need to be tested for are:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTg)- IgA

Total IgA level.

You need to be eating gluten for the blood tests as well as the biopsy to get the most accurate results but the best test is that there is a positve dietry response. If you get better gluten free then that is the proof. Good luck.

[Ursa Major]

Meline, if you have been gluten-free for three months, you would get a negative biopsy even if you eat bread for a few weeks. You would have to eat at least four slices of bread for three to six months (and it might take even longer) to even have a chance of getting a positive biopsy.

The same goes for the blood tests. It is very unlikely that they would be positive at this point, even with the glutening you've had.

I can't imagine that it would be worth it to you, to make yourself so sick again. You will just have to tell your mother that bread makes you sick, and that not eating it makes you feel better. And that nobody, not even her, can make you eat anything with gluten again.

Have you considered that maybe you are intolerant to dairy as well, and that your pains could be from that? Soy could be the culprit as well.

[MELINE]

  Ursa Major said:

Have you considered that maybe you are intolerant to dairy as well, and that your pains could be from that? Soy could be the culprit as well.

Yes ursa major.........I am intolerant to dairy and I ' ve stopped eating anything with lactose....lactose free for 3 months but the pain still there..Soy... I've never tasted it....anyway my new doctor HAS to give me an answear for that pain and the nausea. I had no idea I should eat so much gluten just to have that test correct...Of course I am not going to have it if that's the case. I am not getting all that sickness back...I'll just stick to my gluten-free diet and keep on feeling great. Thank you for the information !

Gwen b:

I'll keep those blood tests in mind but since I'll have to gluten my self in order to have positive results I think I will not use them after all.....Thank you for your response...

[Ursa Major]

Meline, being lactose free and being dairy (casein) free are not the same thing. In order to be dairy free you would have to stop eating (and drinking) ALL milk, cheese, yogourt, sour cream, milk chocolate, cottage cheese etc. And just taking Lactaid wouldn't work if you are casein intolerant.

Soy is in so many things that unless you read labels and avoid foods that have it, you wouldn't know you are eating any. Unless you purposely eat things like tofu, of course, or drink soy milk.

But you are right, you should try to find out what is causing that pain. It could be your gallbladder. Many of us had our gallbladders out at a fairly young age, gallbladder disease is common with people with undiagnosed celiac disease.

[MELINE]

  Ursa Major said:

Meline, being lactose free and being dairy (casein) free are not the same thing. In order to be dairy free you would have to stop eating (and drinking) ALL milk, cheese, yogourt, sour cream, milk chocolate, cottage cheese etc. And just taking Lactaid wouldn't work if you are casein intolerant.

Soy is in so many things that unless you read labels and avoid foods that have it, you wouldn't know you are eating any. Unless you purposely eat things like tofu, of course, or drink soy milk.

But you are right, you should try to find out what is causing that pain. It could be your gallbladder. Many of us had our gallbladders out at a fairly young age, gallbladder disease is common with people with undiagnosed celiac disease.

Hello ursa major...I didn't know the difference between lacotse and casein. But I am not getting neither of them. As for soy, I also have intolerence there so I am excluding all food that has soy....

You said smth about gallbladders but the pain should be on the right side and my pain is on the left side. Of course I am not a doctor so I will not jump into conclusions. Tomorrow is my appointment with the doctor so I hope I'll get some answers....Thank you ! Take care

[Ursa Major]

  MELINE said:

Hello ursa major...I didn't know the difference between lacotse and casein. But I am not getting neither of them. As for soy, I also have intolerence there so I am excluding all food that has soy....

You said smth about gallbladders but the pain should be on the right side and my pain is on the left side. Of course I am not a doctor so I will not jump into conclusions. Tomorrow is my appointment with the doctor so I hope I'll get some answers....Thank you ! Take care

Oops, yes, of course you said that the pain is on the left side. So it really can't be the gallbladder.

I hope that your doctor will figure out what causes the pain.

[kenlove]

Hi Meline,

I'm still in japan until april 3 or 4. Its a long time to be away from Hawaii but i cant complain. i'm glad your ok!

take care

  MELINE said:

I am ok now ken thank you for your immediate response! I'll ask for the name of the blood tests. still in tokyo? have fun!