Negative Blood Work...

[LIS-Guy]

Hi,

I got my Celiac labs back today and they were all negative. However I do have an appointment scheduled with a gastroenterologist next thursday and I have authorization to proceed with an endoscopy if I should want one. It seems prudent to go ahead and have this done, since my symptoms are highly suggestive of Celiac and there may well be something else going on down there as well.

Questions:

I have read that you can have negative labs and positive biopsy, but is this very common?

The only lab my doctor did not order is Total IgA, but is it necessary for me to bother him again for yet another test, when I'm going to proceed with the endoscopy anyway?

Thanks for any advice,

LIS

[melmak5]

False negatives are possible in blood work.

If you are going to have an endoscopy, it might make sense to wait and see what shows up from the biopsy of your small intestine. If it is inconclusive, then follow-up blood work might make sense.

[ShayFL]

I agree. Go ahead with the biopsy and then go from there.

[LIS-Guy]

Thanks for the replies!

I took some time to research Total IgA this evening and understand now exactly what you have been talking about. In fact, it seems to me that my results are pretty much worthless without knowing whether I am IgA deficient or not. Given that Celiac patients are more likely than the general population to be IgA deficient, I wonder why any doctor would even bother ordering a Celiac panel without it?

I think I shall go ahead and request a Total IgA prior to my gastro visit next week, so that we have a more complete picture going into the biopsy. If I am IgA deficient, might it explain my chronic infections (ear, sinus, and throat specifically)? This might be another important piece to the puzzle.

Thanks again for the valuable info.

LIS

[happygirl]

I took some time to research Total IgA this evening and understand now exactly what you have been talking about. In fact, it seems to me that my results are pretty much worthless without knowing whether I am IgA deficient or not. Given that Celiac patients are more likely than the general population to be IgA deficient, I wonder why any doctor would even bother ordering a Celiac panel without it?

I think that would be a wonderful question to ask your doctor.

[ShayFL]

Dont be afraid to be knowledgeable with a doctor. A good doctor will listen and admit if he does not know something. A bad doctor will belittle you, act arrogant or get upset that you actually know something. Fire a bad doctor and look for a good doctor if that happens.

Hoping all goes well and you get some answers!

[Fiddle-Faddle]

Lis, sorry if you already know this, but I just wanted to make sure you knew you should be EATING GLUTEN until after the biopsy.

[lizard00]

Given that Celiac patients are more likely than the general population to be IgA deficient, I wonder why any doctor would even bother ordering a Celiac panel without it?

If you get an answer to that question, please post it. I've been wondering that, too. But what's worse is when the doc runs the total IgA serum, but doesn't know what she's looking at. So when it comes back close to non-existant, signs off on it and says, "oh it's ok. Be glad you don't have Celiac, have a nice day."

I do agree with all the others, go ahead with the edoscopy. I wish that I had been able to have one, just to have a reference point for the amount of damage vs. a follow up a year or so later to make sure everything was as it should be.

[LIS-Guy]

Hi all,

My PCP ordered a quantitative immunoglobulin panel for me last week. My IgA, IgG, and IgM levels are all normal, which supports the negative Celiac blood work I recieved. Nevertheless, I'm keeping my appointment with the gastroenterologist on thursday. Celiac or not I still have chronic GI issues that need investigated and an endoscopy is probably in order anyway. Could always have a positive biopsy despite the negative blood work, but more likely there is something else afoot and hopefully we will find it.

LIS

[leadmeastray88]

Hi all,

My PCP ordered a quantitative immunoglobulin panel for me last week. My IgA, IgG, and IgM levels are all normal, which supports the negative Celiac blood work I recieved. Nevertheless, I'm keeping my appointment with the gastroenterologist on thursday. Celiac or not I still have chronic GI issues that need investigated and an endoscopy is probably in order anyway. Could always have a positive biopsy despite the negative blood work, but more likely there is something else afoot and hopefully we will find it.

LIS

That's great LIS_Guy, I hope the endoscopy reveals some answers for you!

[LIS-Guy]

Hi all,

Just wanted to report that I had an excellent visit with the gastroenterologist today.

She was extremely thorough in going over my medical history, she reviewed with me all of the blood work my PCP has ordered so far, and then we discussed my current symptoms in detail. She made quite a few notes, listened attentively, and seemed especially interested in the autoimmune diseases that run in my family (primarily Hashimoto's but there are others as well). She also spoke at length about the Celiac/Hashimoto's connection which leads me to believe she is up on the current research.

She's seemed concerned about my chronic infections (I'm a bacteria magnet) as well as my Celiac symptoms. She told me right off the bat that she doesn't put a lot of faith in blood tests, and wants to 'get in there and have a look around' as soon as possible. In fact she scheduled me for an endoscopy/biopsy for this coming wednesday. I'm a little nervous about it. She did describe in detail what all she will be doing, and said that she'll sample a minimum of 8 different sites.

Thanks again for all the support from you nice folks! You've all been great.

LIS

[lizard00]

I am so happy that you have found a GI that is not dismissive and seems to be up to date.

Keep us updated!!!

[LIS-Guy]

I had my endoscopy today and I wish I could say I'm happy about it, but I'm not. The nurse told me afterwards that the whole procedure took only five minutes from start to finish, where they normally take twenty to thirty. She said the doc was 'rushed today'. And instead of the eight biopsies the GI discussed with me beforehand, she only took two... one upper and one lower. Now I have to wait until December 8 to get the results, which of course won't show anything with only two sites tested. At least I can start my gluten-free diet now and institute my own care, because obviously no doctor is interested in doing so. This is a GI doctor who really impressed me on first visit, and I really had high hopes she would help get to the bottom of my problems. But in the end I got a 'quickie' endoscopy and she couldn't even be bothered to come see me afterwards and let me know what she saw. I have to wait over a month to find out.

[ShayFL]

If only we could refuse to pay for crappy service. So sorry this happened to you. I got crappy service from an ENT once. He is an "expert" and "world renouned" but he treated me poorly. I was paying out of pocket.....nearly 700.00. This was 12 years ago and I didnt have a job. So I wrote him an emotional letter telling him that he should be ashamed of the way he treated me. I pointed out examples of his horrible "bed side manner". I told him my husband (who was there with me) was absolutely appalled. I told him I chose him out of network because he was supposed to be the best. Telling him how much confidence I had in him and that he was no better than a nurse practioner. To my great surprise, I got a letter in the mail back and they gave me a complete refund. I confirmed that my credit card had been credited. Complain. You never know.....

[IMWalt]

At least you got two! I was suprised when I found out my doc only grabbed one sample from me, especially since he was the one who did the same with my daughter. With her, they did the biopsy first, just one sample, which was negative, and then did the blood work which was positive. From what I understand, it is quite common to find no damage in one area but then find damage in another. My doc bills himself as a celiac expert, so you can understnad my frustration. I have an appt. in a couple weeks, and I plan on asking for an explanation why he only took one sample.

Oh, and don't get me started on the eating gluten before. His office simply told me to eat gluten leading up to the test. I ate some, but no where near what I guess I should have. According to him, "a little bit will cause problems, so no need to eat a couple slices of bread a day".

I'm going to ask why then whenever I eat some gluten, either by accident or on purpose, I get D, cramps, gas, etc.

Arrggg.

Walt