Positive Blood Test, Negative Endoscopy?

[Rachnnnn]

Hi - I'm very confused and a bit frustrated. I had pretty much given up on getting help for chronic GI symptoms - have been told its IBS and for all intents and purposes to suck it up. I went to a new doctor (because I moved) for something unrelated, and she ran a bunch of blood tests since I was a new patient. To my shock she called me in to tell me my bloodwork was positive for Celiac. The full panel was run and all of the numbers were considerably high (one, IGg?, was 35). I finally had my endoscopy on Thursday and the doctor said he did not see signs of Celiac, although we will wait for the biopsy to come back. I am supposed to make an appointment for three weeks from now to discuss this with him. Three weeks feels like an eternity to wait for the results, but I realize that's just because I'm anxious. Any thoughts on whether the blood test is likely to be negative, or if the endoscopy is more likely to be incorrect? Thanks for any insight!

Rachel

[tarnalberry]

If you went gluten free between the blood test and the endoscopy, then I'd bet money the endoscopy could be incorrect as you were healing.

If you've had these symptoms fairly recently (within the past few years, not all your life), then I'd bet the endoscopy could be incorrect as you hadn't done enough damage yet.

If the lab doesn't accept moderately blunted villi as "damaged", I'd call the endoscopy the incorrect one because they have unrealistic expectations.

If the doctor didn't take enough samples to get a fair assessment, in the most likely places of damage, I'd call the endoscopy the incorrect one because they missed it.

All that aside, the doctor can't tell - without the slides being looked at - if you have celiac or not. So, saying anything prematurely was, IMHO, bad practice.

[*lee-lee*]

my tests were the same way - positive blood but the endoscopy was negative so my GI doc wouldn't diagnose me. but i had such a strong positive reaction to the diet, plus i tested positive for one of the genes, i decided i don't need a doctor to tell me "you have Celiac".

it's my understanding that a positive blood result is more likely to be accurate. the biopsy only tests a few small samples of your 20-something feet of intestine so there's a good chance they'll miss the damage if it isn't widespread. i think that's what happened with me - i was just lucky to have caught it before too much damage could be done.

the good news for you is the endoscopy is over with and you can start a gluten free diet now, if that's what you choose to do. no more glutening yourself just for the sake of a test.

[elye]

I have read over and over, and it has been stated repeatedly here by many who really know their stuff, that a false positive on the blood panel is next to impossible. If the antibodies are there, they are there. Add to that the fact that false negatives with the biopsy are most definitely possible, and I would say you likely have your answer.

SO many members here have talked about their bogus diagnosis of IBS (which some say really stands for "I be stumped", proclaimed when doctors don't know what else to call it), and how putting themselves on the gluten-free diet finally made their symptoms go away.

Welcome to the board..........you've come to the right place!

[wildwood]

My daughter had a negative endoscopy before her blood test results came back. Her blood test was postive and a second biopsy was done which also came back negative. Her provider diagnosed her with celiac based on the blood test. She has been gluten free ever since and feels better than she has in years. All of the vague symptoms she has experienced the past few years (belly discomfort, constipation, chest pain, skin rashes, mood swings) have all but gone away. Since going gluten free though, she has found that she has become alot more sensitive to gluten and can tell almost immediately when she has been "glutened". Luckily this rarely happens. It is so painful for her now to ingest gluten that she is diligent about making sure it does not happen.

[gf-soph]

I returned positive bloodwork in 2007, but my biopsy was negative. My gastroenterologist told me not to bother going off gluten as there was no way it was causing my severe GI symptoms!! I believed him, so spent the next year of my life in severe pain and poor health due to malabsorption problems. I really wish that I had done a bit more research at the time, but I was so happy to hear that I wouldn't have to go gluten-free that I was too willing to believe it.

Things were terrible until October last year - all it took was one good doctor to see the pattern of GI problems, malabsorption and positive blood work, and she immediately told me that I had to go gluten free.

There are differences of opinion on biopsies and blood tests, celiac vs gluten sensitivity, but at the end of the day you have positive blood work and GI symptoms. That alone is enough to say it's worth trying a gluten-free diet to see if you feel better.

I would also suggest keeping a food and symptom diary, which can be useful to pinpoint other possible food sensitivities, and also to help you appreciate any symptom improvements. For example, within a couple of weeks of going gluten free I found that I was free of my chronic foot cramps and mouth ulcers, which I had never thought to associate with gluten. Other symptom improvement came later, but those first few things indicated I was on the right track.

I hope your appointment goes well, but remember that not all doctors are familiar with the full range of gluten-related health problems. I was also lumped with the IBS diagnosis, and it was never an adequate explanation. There is a lot of good information around, and especially on this board.

Let us know how it goes!

[Rachnnnn]

Thank you all so much for the advice! The idea of going gluten free is pretty intimidating, but it sounds like I should give it a shot and see if it makes a difference. I am going to spend some time reading some posts on this board for tips on how to do this. Thanks again!

[StoneCutters]

Hi Rachel,

I was wondering if you ever had luck with the endoscope? What I learned from my own experience and from someone giving me advice beforehand was, make sure the doctors take enough samples of the intestine to test and to not be afraid to tell the doctor that.

:)Kirsten

Hi - I'm very confused and a bit frustrated. I had pretty much given up on getting help for chronic GI symptoms - have been told its IBS and for all intents and purposes to suck it up. I went to a new doctor (because I moved) for something unrelated, and she ran a bunch of blood tests since I was a new patient. To my shock she called me in to tell me my bloodwork was positive for Celiac. The full panel was run and all of the numbers were considerably high (one, IGg?, was 35). I finally had my endoscopy on Thursday and the doctor said he did not see signs of Celiac, although we will wait for the biopsy to come back. I am supposed to make an appointment for three weeks from now to discuss this with him. Three weeks feels like an eternity to wait for the results, but I realize that's just because I'm anxious. Any thoughts on whether the blood test is likely to be negative, or if the endoscopy is more likely to be incorrect? Thanks for any insight!

Rachel

[sa1937]

Hi Rachel,

I was wondering if you ever had luck with the endoscope? What I learned from my own experience and from someone giving me advice beforehand was, make sure the doctors take enough samples of the intestine to test and to not be afraid to tell the doctor that.

:)Kirsten

Welcome to the forum, Kirsten! Since you have replied to an old post, it's highly unlikely that Rachel will see your question since she hasn't been on the forum since Sept., 2009. Just so you now...