Biopsy Question...

[Lilla]

Hi!

Everyone here has been so helpful!

I have a new question:

I got my blood test results late last week. Came back negative. However, the doctor still wants a biopsy done just to be sure. What is the likelihood of a biopsy being positive when the initial blood test was negative? I understand that this isn't really a "wash and wear" question. I had a gastroscopy years ago and do not recall it with any degree of fondness. Would hate to think I would have to go through that again if the chances were very, very slim of them getting any sort of confirmation.

Thanks in advance!

Karen in Sweden

[par18]

Hi!

Everyone here has been so helpful!

I have a new question:

I got my blood test results late last week. Came back negative. However, the doctor still wants a biopsy done just to be sure. What is the likelihood of a biopsy being positive when the initial blood test was negative? I understand that this isn't really a "wash and wear" question. I had a gastroscopy years ago and do not recall it with any degree of fondness. Would hate to think I would have to go through that again if the chances were very, very slim of them getting any sort of confirmation.

Thanks in advance!

Karen in Sweden

Hi Karen,

Are you having Celiac type symptoms? Why did you get a blood test? Have you been on a gluten free diet at all?

Tom

[Lilla]

Hi Karen,

Are you having Celiac type symptoms? Why did you get a blood test? Have you been on a gluten free diet at all?

Tom

Hi, Tom!

Yes, I've been having Celiac symptoms for years...just didn't know that one thing could explain so much. I started to get a clue that it had something to do with food (and that being something I ate often) earlier this year. I haven't been on a gluten free diet for more than very, very short periods a very few times during the past few months (I'm talking about 2 days maybe 2 or 3 times). I was basically shocked (feel silly now saying that) and disappointed that the blood tests results were negative. Just wondering if it would be smart to get the biopsy even though the bloodwork was negative. I have a hard time wrapping my head around the possiblity of that being positive if it didn't show up elsewhere.

Thanks!

[flagbabyds]

I would do it, and before it really load up on the gluten!

There is a lab near us that according to my doctor givs a lot of false negatives to people. That could be what is going on with the lab you sent it to.

thats my opinion, it might not be what you want to do, is your doctor in suport of you going on the diet without a valid 'test' that he/she could do on you, cause if he believes in dietary response as a test then that is the way to go.

[Lilla]

I would do it, and before it really load up on the gluten!

There is a lab near us that according to my doctor givs a lot of false negatives to people. That could be what is going on with the lab you sent it to.

thats my opinion, it might not be what you want to do, is your doctor in suport of you going on the diet without a valid 'test' that he/she could do on you, cause if he believes in dietary response as a test then that is the way to go.

Is that the smartest? To load up on gluten first? I wondered if that would be the best...seemed so to me! The doctor at this point just wants to see if it's gluten or not according to what he sees as the most effective means of testing they have. He seems quite laid-back, so I assume that he would be in support of me just trying the diet on my own--but, it is starting to seem like I might as well go ahead and get the biopsy just in case. In Sweden, you might have to wait a million years for tests, but medical care is basically next to free.

[eKatherine]

Is that the smartest? To load up on gluten first? I wondered if that would be the best...seemed so to me! The doctor at this point just wants to see if it's gluten or not according to what he sees as the most effective means of testing they have. He seems quite laid-back, so I assume that he would be in support of me just trying the diet on my own--but, it is starting to seem like I might as well go ahead and get the biopsy just in case. In Sweden, you might have to wait a million years for tests, but medical care is basically next to free.

How will the endoscopy tell your doctor if it's gluten or not? All the biopsy can show is whether you have intestinal damage, not whether gluten is causing all your symptoms. The only way to tell if gluten is making you sick is to give it up for 6 weeks or so.

If the biopsy is negative, will he order you to keep eating gluten? Will you, or would you try a gluten-free diet for a while? Would he accept it if you found that giving up gluten made your symptoms go away?

Seriously, the biopsy only gives you limited information.

[Lilla]

How will the endoscopy tell your doctor if it's gluten or not? All the biopsy can show is whether you have intestinal damage, not whether gluten is causing all your symptoms. The only way to tell if gluten is making you sick is to give it up for 6 weeks or so.

If the biopsy is negative, will he order you to keep eating gluten? Will you, or would you try a gluten-free diet for a while? Would he accept it if you found that giving up gluten made your symptoms go away?

Seriously, the biopsy only gives you limited information.

I figured that I would give up gluten after this is done, no matter what the results are. I guess that I would feel that his opinion was irrelevant at that stage (if the biopsy was negative and he told me to keep eating gluten). I thought perhaps a biopsy might be good to gauge any damage done, plus, in the event that it indicated damage, it would enable me to receive a sum of money from the goverment to help me pay for a gluten free diet.

[Chelle15]

Hi Lilla. I got blood work done and it came back with two positive markers, so I was sure I had it and I was relieved to find the answer. Then I saw the GI and she told me the markers that came back positive were very insignificant, so I was very disappointed as well. He scheduled me for a biopsy and a colonoscopy. I want a formal dx for my own knowledge. It is up to how you feel about it. A lot of people on here are fine with cutting gluten out and judging by that. I always feel like a hypocondriac(sp?) and feel like other people think I am too. I would like confirmation if that is what I have for myself.

[RunnerNYC]

Hi Lilla,

I would also suggest getting the biopsy done. I just got back negative blood results. My doctor ordered the anti-endomysial and the tissue transglutaminase. I went for the biopsy last week and I'm still waiting on the pathology. The biopsy wasn't really so bad - I didn't even have to be put out.

My doctor put me on a gluten-free diet in the meantime to see how I respond. I have all of the symptoms of gluten-sensitivity- low iron, abdominal pain, bloating, weight loss. I think I'm starting to feel better after a few days on the diet, but my boyfriend says I have a "mental gluten-allergy."

I guess a mental gluten-allergy wouldn't be the worst thing to have, but if all of the tests come back negative I'm not sure how motivated I will be to stick to the diet. I'm also thinking of sending away for the enterolab-tests, but I'm still waiting to see if my insurance will cover the cost.

Anyway, keep us posted and let us know if you decide to go gluten-free.

[Guest schmenge]

When I had my biopsy (which was a piece of cake, gluten cake at the time ) I came out of recovery and my doctor showed me the pictures of my damaged intestines (and what "normal" intestines look like). He said he would not know for sure until the biopsy results came back, but based upon what he was seeing I had Celiac (which I had never even heard of before). He called a few days later and confirmed Celiac. I asked what the chances are that the biopsy was incorrect and he told me there were none, it was conclusive.

Given that the damage was done over years, and that it takes a while to heal, I don't see any benefit to "loading up" on gluten before the biopsy.

[par18]

How will the endoscopy tell your doctor if it's gluten or not? All the biopsy can show is whether you have intestinal damage, not whether gluten is causing all your symptoms. The only way to tell if gluten is making you sick is to give it up for 6 weeks or so.

If the biopsy is negative, will he order you to keep eating gluten? Will you, or would you try a gluten-free diet for a while? Would he accept it if you found that giving up gluten made your symptoms go away?

Seriously, the biopsy only gives you limited information.

Lilla,

I like this option. If you could get extra money from your government is one thing but I don't think I would want to go through a lot of pain and possible damage if I could get the same results with a diet change. The only difference between me and someone who did not get a biopsy but still went on the gluten-free diet is I had to pay a lot of money. When I go to the store to get some expensive gluten-free item I don't get a price break because I had a biopsy. I personally think if you are smart enough to find this website and ask questions then you would be smart enough to give up gluten and see what happens. Good luck.

Tom

[Lilla]

I have gone short periods without gluten before, and I have noticed that it alleviated enough of my symptoms to know that a gluten free diet is certainly the smartest thing to try. Perhaps I didn't make this clear in my posts, but I certainly realize that this way is the most intellegent. It is quite clear to me that our bodies know best.

I have hesitated in writing this, but I would like to add one thing. Perhaps I am in the wrong, but the tone of the last reply is a bit harsh. If my post appeared to be insipid, then perhaps it wasn't necessary to waste one's time in replying to it. I am alone, living in a foreign country, with essentially no one to talk to about this whatsoever. I asked what I deemed to be a reasonable question regarding the technicalities of something I know nothing about. I apologize if I failed to formulate my inquiry clearly.

[par18]

I have gone short periods without gluten before, and I have noticed that it alleviated enough of my symptoms to know that a gluten free diet is certainly the smartest thing to try. Perhaps I didn't make this clear in my posts, but I certainly realize that this way is the most intellegent. It is quite clear to me that our bodies know best.

I have hesitated in writing this, but I would like to add one thing. Perhaps I am in the wrong, but the tone of the last reply is a bit harsh. If my post appeared to be insipid, then perhaps it wasn't necessary to waste one's time in replying to it. I am alone, living in a foreign country, with essentially no one to talk to about this whatsoever. I asked what I deemed to be a reasonable question regarding the technicalities of something I know nothing about. I apologize if I failed to formulate my inquiry clearly.

Lilla,

Reply not meant to be harsh. I applaud you to inquire about your options. Not sure what the word "insipid" means. I found this website after I was diagnosed so it could not help me avoid the unpleasent symptoms that I experienced. I wish I had known I could have gone on the diet. Once I found out about the gluten-free diet I have been on it without exception for the last 15 months and have been fine. What I am saying is that regardless of who makes the diagnosis of Celiac Disease (a doctor, you or one of the members of this board) the treatment is still the same. There is no medicine to take once you have been diagnosed just the gluten-free diet. Once again there was no attempt to be harsh or mean in my reply.

Tom

[Lilla]

Lilla,

Reply not meant to be harsh. I applaud you to inquire about your options. Not sure what the word "insipid" means. I found this website after I was diagnosed so it could not help me avoid the unpleasent symptoms that I experienced. I wish I had known I could have gone on the diet. Once I found out about the gluten-free diet I have been on it without exception for the last 15 months and have been fine. What I am saying is that regardless of who makes the diagnosis of Celiac Disease (a doctor, you or one of the members of this board) the treatment is still the same. There is no medicine to take once you have been diagnosed just the gluten-free diet. Once again there was no attempt to be harsh or mean in my reply.

Tom

I am sincerely sorry that I misjudged the tone of your reply. The only thing I don't like about the internet is the inability to see someone's face when reading something they wrote. It's so easy to interpret things incorrectly, as I did here.

Thank you for your input. It is helpful in understanding the bigger picture here. I suppose I am overly sensitive now as I am very confused trying to figure out what is going on with my body plus attempting to navigate a medical system in a new country with a language I don't really speak very well. My apologies to you.

[queenofhearts]

Lilla, it's very normal to be a bit emotional about this! I didn't think Tom's post sounded harsh, but you are right, it's a disadvantage of internet communication that we can only read the words, not see the speaker. That's why all the emoticons (smilies)-- but there aren't nearly enough to cover all facial expressions! And there's the tone of voice too...

But back to the point of the biopsy. The most helpful aspect of it in my case was that it convinced family members that the gluten situation was real. If you live in a household of gluten-eaters who might be a bit careless in their cross-contamination, &c, it might help to have a firm diagnosis in hand.

Good luck to you, & by the way, your English is perfect! What is your native language?

Leah

Oops, just saw your first post so I'm guessing it's Swedish! I lived in Denmark briefly when I was a kid, & was put to work in my Danish school helping 4th graders with their English. I know language classes start early in Sweden too. How I wish we took the same approach here.

[Lilla]

Lilla, it's very normal to be a bit emotional about this! I didn't think Tom's post sounded harsh, but you are right, it's a disadvantage of internet communication that we can only read the words, not see the speaker. That's why all the emoticons (smilies)-- but there aren't nearly enough to cover all facial expressions! And there's the tone of voice too...

But back to the point of the biopsy. The most helpful aspect of it in my case was that it convinced family members that the gluten situation was real. If you live in a household of gluten-eaters who might be a bit careless in their cross-contamination, &c, it might help to have a firm diagnosis in hand.

Good luck to you, & by the way, your English is perfect! What is your native language?

Leah

Oops, just saw your first post so I'm guessing it's Swedish! I lived in Denmark briefly when I was a kid, & was put to work in my Danish school helping 4th graders with their English. I know language classes start early in Sweden too. How I wish we took the same approach here.

I feel a bit foolish now...especially after reading through everything again after a few hours. I guess should have learned to not trust my first impressions...at least not until the ol' emotions are settled again. My apologies to everyone again.

Anyways, my first language is actually English. I am an American living in Sweden. I moved a few years ago. My Swedish is decent enough for basic conversations, but isn't particularly adequate for handling any medical issues. That causes a lot of stress.

I was also thinking along the lines of having a biopsy to help me out with sceptical family members. All of my family is back in States. I think my mother decided that I was a hypochondriac about a decade ago, so it would be a great help in aiding me to convince her that something is actually causing all of this.

I love Denmark! Copenhagen is so beautiful. I am considering moving there to study for a semester. I understand a bit of Danish, but mostly if it is written. It sounds sooooo very different from Swedish, even though many of the words are the same.

Thanks for the reply. Please forgive a frustrated/tired/nervous newbie for an overly sensitive rant earlier in this thread.

[Michi8]

Hi!

Everyone here has been so helpful!

I have a new question:

I got my blood test results late last week. Came back negative. However, the doctor still wants a biopsy done just to be sure. What is the likelihood of a biopsy being positive when the initial blood test was negative? I understand that this isn't really a "wash and wear" question. I had a gastroscopy years ago and do not recall it with any degree of fondness. Would hate to think I would have to go through that again if the chances were very, very slim of them getting any sort of confirmation.

Thanks in advance!

Karen in Sweden

Karen,

I'm in the same boat as you: negative blood tests, but still going for a biopsy. ASFAIK, it's not unsusual to have negative blood tests, especially if you're IGA deficient.

As I am in Canada, the biopsy will cost me nothing out-of-pocket, and there is a tax benefit for gluten-free foods only for those with a positive diagnosis of celiac. The biopsy is also important for me in that, if it is positive, then there is a reason to encourage symptomatic family members to get tested as well...including my children. I just wish I didn't have to wait more than three months for the biopsy (and more than 7 months for a colonoscopy!), because I would just like to get on with trying out the diet.

Michelle

[queenofhearts]

I feel a bit foolish now...especially after reading through everything again after a few hours. I guess should have learned to not trust my first impressions...at least not until the ol' emotions are settled again. My apologies to everyone again.

Anyways, my first language is actually English. I am an American living in Sweden. I moved a few years ago. My Swedish is decent enough for basic conversations, but isn't particularly adequate for handling any medical issues. That causes a lot of stress.

I was also thinking along the lines of having a biopsy to help me out with sceptical family members. All of my family is back in States. I think my mother decided that I was a hypochondriac about a decade ago, so it would be a great help in aiding me to convince her that something is actually causing all of this.

I love Denmark! Copenhagen is so beautiful. I am considering moving there to study for a semester. I understand a bit of Danish, but mostly if it is written. It sounds sooooo very different from Swedish, even though many of the words are the same.

Thanks for the reply. Please forgive a frustrated/tired/nervous newbie for an overly sensitive rant earlier in this thread.

Well that explains your flawless English! I can definitely relate to the difficulty of getting along in a foreign country, though I haven't had to deal with Celiac issues abroad (only diagnosed ~2 months ago).

I'm sorry to say I've forgotten all my Danish; I lived in Copehagen when I was 9 & didn't get any practice since. I do like to think that it would come back to me if I ever went back, but I may be kidding myself!

So many of us have been accused of hypochondria for years... maybe from the fear of that judgment, I just never talked about my illness, myself, so the hard part for me was convincing people that I had even been sick! Of course my husband & kids actually saw me getting weaker & sicker, but you couldn't easily tell if you didn't live with me. Having an official diagnosis helps when I'm turning down a friend's homemade goodies!

Leah