18 replies to this topic

[Holly4]

Excactly what I didn't want to happen has happened...I have a postive blood test for celiac and my biopsy came back as normal. My GI says no way do I have celiac. I have been gluten free for about 4 days. Now I don't know what to do. I don't want to be gluten free if I don't have to, but I also dont want to not go gluten-free if I really have celiac. I would love any input on this matter especially if you have had a similiar experience.

My GI doesn't seem to know much about celiac and only biopsied 2 spots. I wondered if that were enough. He also discovered I have Reflux and damage in my esophagus from that-which has just started in the last month or so...he called in a prescription which I hate to have to take.

I am so lost! Please help if you have any good info or ideas.

[ravenwoodglass]

A positive blood test trumps the negative biopsy. Some doctors diagnose without biopsy if the blood tests are positive as the rate of false negatives is pretty high. The damage your doctor did find could very well be due to celiac. I would stay on the diet strictly and give yourself time to heal. The choice to take the meds now or wait a bit and see if you get relief from the diet is up to you, I can't really advise on that one way or the other. You may want to avoid dairy and soy for a little while at first also.

[sa1937]

It would be very rare (if at all) to have a positive blood test and not have celiac. In this case, I would consider yourself as having celiac.

Your GI should have taken at least six biopsies and even then, if damage is patchy, they may not have shown anything. By going gluten-free, you may find your answer in the way you feel. I understand your not wanting to have celiac...I mean, who does? We'd all like to eat whatever we want whenever we want. So if it were me, I'd go gluten-free and never look back.

[starrytrekchic]

A positive blood test is enough to diagnose celiac. Your doctor should have taken 5-6 biopsies, as intestinal damage can be patchy. It's also possible that he messed up with the biopsies or that your celiac isn't severe enough yet to cause substantial intestinal damage.

Regardless of why the biopsy was negative, staying gluten free is a must!

[sb2178]

You're latent! Or "potential"! Definitely stay on the diet unless you want to get sicker and have another endo and/or related health complications like osteoporosis and B12-deficiency related neuropathy in your future.

There's actually a good bit of recent research examining people like you (us). Turns out, they can avoid the whole flat intestines thing by going gluten-free. It's beginning to look like the flattening intestines is the final outcome rather than an early sign of celiac disease.

[T.H.]

Ignore the ignorant doctor, listen to the blood test. That recent study involved patients with positive blood tests and negative biopsies, specifically. And those with positive blood tests had metabolic problems just like the positive biopsied celiacs.

The speculation after the study was that the blood test being positive may precede positive biopsies. If it were me, I'd go with the most recent information over the doctor's outdated info.

[JohnnyMax]

This is exactly what happened to me. I finally bit the bullet and decided to get the biopsy done by a specialist at the Celiac Clinic at New York Presbytarian. It came back clean. My doc said the blood test is only a guide to be used for further evaluation, by no mean definitive. In fact he said it is prone to both false positives and negatives based on a number of variables. I have been heavily stressed for a period of time with a new business and this is when these problems manifested themselves. He put me on Valium, and within a few days I was feeling my old self again, no more bloating or other GI problems. He said the stress can easily through off any blood test. He advised me to reintroduce the gluten into my diet again and see how I feel. He plans to run a blood test again after several weeks and see what the results are, but he anticipates they will be normal this time. So far so good.

[sa1937]

This is exactly what happened to me. I finally bit the bullet and decided to get the biopsy done by a specialist at the Celiac Clinic at New York Presbytarian. It came back clean. My doc said the blood test is only a guide to be used for further evaluation, by no mean definitive. In fact he said it is prone to both false positives and negatives based on a number of variables. I have been heavily stressed for a period of time with a new business and this is when these problems manifested themselves. He put me on Valium, and within a few days I was feeling my old self again, no more bloating or other GI problems. He said the stress can easily through off any blood test. He advised me to reintroduce the gluten into my diet again and see how I feel. He plans to run a blood test again after several weeks and see what the results are, but he anticipates they will be normal this time. So far so good.

I'm no doctor, but I really question this. I mean, how can stress change or affect your positive antibodies for celiac? Were you eating gluten-free before your biopsy and if so, for how long? Did he take at least 6 biopsies? It's quite possible that damage was patchy or not severe and he could have biopsied areas that weren't damaged.

By reintroducing gluten you may very well have your answer regardless of the failure of the biopsies to indicate celiac.

[ravenwoodglass]

This is exactly what happened to me. I finally bit the bullet and decided to get the biopsy done by a specialist at the Celiac Clinic at New York Presbytarian. It came back clean. My doc said the blood test is only a guide to be used for further evaluation, by no mean definitive. In fact he said it is prone to both false positives and negatives based on a number of variables. I have been heavily stressed for a period of time with a new business and this is when these problems manifested themselves. He put me on Valium, and within a few days I was feeling my old self again, no more bloating or other GI problems. He said the stress can easily through off any blood test. He advised me to reintroduce the gluten into my diet again and see how I feel. He plans to run a blood test again after several weeks and see what the results are, but he anticipates they will be normal this time. So far so good.

I'm sorry but your doctor is flat out wrong about stress causing a positive blood tests. Stress does not cause your body to make antibodies. Celiac symptoms can be sporatic at first and the relief you were getting was from being on the diet. Chances are good that reintroducing gluten is going to flare those symptoms again.

[kirstny]

Hi. I'm new to this board and being diagnosed. Curious which blood test you guys mean...? I tested positive for celiac with the genetic testing, but negative with the biopsy and, I think, the antibodies....? But I had been gluten free for months before testing (with just 1 slip). I feel better gluten free so, doc diagnosed me with celiac. Anyone else have this experience?
Probably not where I should post this (sorry for hijacking!), but I'm also wondering how long it takes to feel "normal" again... I'm still bloated, sometimes constipated, etc..

?

Thanks!

[Luddie]

Excactly what I didn't want to happen has happened...I have a postive blood test for celiac and my biopsy came back as normal. My GI says no way do I have celiac. I have been gluten free for about 4 days. Now I don't know what to do. I don't want to be gluten free if I don't have to, but I also dont want to not go gluten-free if I really have celiac. I would love any input on this matter especially if you have had a similiar experience.

My GI doesn't seem to know much about celiac and only biopsied 2 spots. I wondered if that were enough. He also discovered I have Reflux and damage in my esophagus from that-which has just started in the last month or so...he called in a prescription which I hate to have to take.

I am so lost! Please help if you have any good info or ideas.

Couple of things: could you go to another doctor who DOES know more about Celiac disease? Ask the receptionist if the doctor does a lot of biopsies. I was told that it takes some skill and skill oftentimes comes with practice. Not that you'd necessarily want to have another biopsy, but just to talk with him/her about yours.
I base the second comment on a recent visit I had with my own doc. I have been seriously gluten free for the better part of a year. I test positive for both genes and my antibodies were up. I decided that since I had never had a biopsy and he had just diagnosed me from my previous symptoms (goiter) and my blood work, maybe it would be a good idea to have one. I asked about it and of course he explained it would take a gluten challenge to do so. I declined. But the critical thing is, he says that as my blood work is showing improvement, the chance of actually finding damage is marginal and it wouldn't change anything anyhow, except make me sicker for another chunk of time. As long as I'm getting better I'm listening to him! Unfortunately, feeling better isn't always what happens at first. Sometimes it takes some time for your body to readjust, as you will see reading some of the other comments.
Good luck!

[sa1937]

Hi. I'm new to this board and being diagnosed. Curious which blood test you guys mean...? I tested positive for celiac with the genetic testing, but negative with the biopsy and, I think, the antibodies....? But I had been gluten free for months before testing (with just 1 slip). I feel better gluten free so, doc diagnosed me with celiac. Anyone else have this experience?
Probably not where I should post this (sorry for hijacking!), but I'm also wondering how long it takes to feel "normal" again... I'm still bloated, sometimes constipated, etc..

?

Thanks!

Blood tests would either be the complete celiac panel or the newer DGP tests (I guess whatever test asked for would depend on the lab doing the analysis) but if you've been gluten-free, the results would probably not be accurate. The gene tests are definitely NOT diagnostic as people can have the genes and never get celiac.

I'd say your body has already given you the answer, test or no test. And yes, I still have occasional ups and downs...still trying to figure out what "normal" is. lol

[kirstny]

Blood tests would either be the complete celiac panel or the newer DGP tests (I guess whatever test asked for would depend on the lab doing the analysis) but if you've been gluten-free, the results would probably not be accurate. The gene tests are definitely NOT diagnostic as people can have the genes and never get celiac.

I'd say your body has already given you the answer, test or no test. And yes, I still have occasional ups and downs...still trying to figure out what "normal" is. lol

Thanks for the response!
Yeah, my doc said she's confident, given my symptoms, the testing, and my history and response to gluten-free diet, that I DO have celiac and need to live accordingly. Glad to hear I'm not the only one figuring out what "normal" is...
Thanks!

[Holly4]

I had a follow up appointment with my GI and he only did one biopsy of my small intestine. It was near the top as well....I am so frustrated. He said it looked normal when he went in there and I think he just assumed it was fine. He did find that I have a problem with reflux which was news to me!

He had also told me I could go gluten free 2 weeks before the biopsy because the cilia would not have time to heal. Is this true???

[Marlie]

I am no doctor but I do believe that Celiac individuals commonly have Reflux. I would google that. From what I've read a doctor should take about 6 samples in a biopsy. A doctor cannot necessarily see the damage unless its bad, it needs to be sent to a lab for verification. What blood test were you positive on for Celiac?