Negative Blood Test?

[scootRN]

Hello! A little background on me...I have had intestinal problems for as long as I can remember. I had never had insurance, so I couldn't afford to go to a doctor to find out what was wrong. So, I did my own research.

Long story short, I was talking with a friend of mine's mom who has celiac, and I researched it further, only to find that I have pretty much every symptom I could find. I went gluten free for a while and it helped, but without a diagnosis, I found it a difficult diet to stick to.

I have just gotten a job where I have insurance, and have been seeking a diagnosis of what is wrong with me. I finally found a nurse practitioner who was willing to test me. She ran a blood test, but it came back negative. I haven't been gluten free for several months now, so I don't think that skewed the result.

She wanted to put me on an IBS medicine that would slow down peristalsis, to help control symptoms, but I feel like if I have celiac and my body is trying to get rid of the gluten, I want it to be able to do that. I told her this, and she treated me like a moron, and informed me that I do not have celiac because my blood test was negative. I pushed to get a GI referral, and she is setting that up. I hope they will do a biopsy.

My question is, is it possible to have a negative blood test, but still have celiac? At this point I just want to know what is wrong so I can work to get better.

Sorry this is so long, I am just so confused.

[mushroom]

Hello! A little background on me...I have had intestinal problems for as long as I can remember. I had never had insurance, so I couldn't afford to go to a doctor to find out what was wrong. So, I did my own research.

Long story short, I was talking with a friend of mine's mom who has celiac, and I researched it further, only to find that I have pretty much every symptom I could find. I went gluten free for a while and it helped, but without a diagnosis, I found it a difficult diet to stick to.

I have just gotten a job where I have insurance, and have been seeking a diagnosis of what is wrong with me. I finally found a nurse practitioner who was willing to test me. She ran a blood test, but it came back negative. I haven't been gluten free for several months now, so I don't think that skewed the result.

She wanted to put me on an IBS medicine that would slow down peristalsis, to help control symptoms, but I feel like if I have celiac and my body is trying to get rid of the gluten, I want it to be able to do that. I told her this, and she treated me like a moron, and informed me that I do not have celiac because my blood test was negative. I pushed to get a GI referral, and she is setting that up. I hope they will do a biopsy.

My question is, is it possible to have a negative blood test, but still have celiac? At this point I just want to know what is wrong so I can work to get better.

Sorry this is so long, I am just so confused.

Hi, and welcome to the forum.

Did you get a printout of your blood test results? Sometimes they do not run the total serum IGA; this is a control test to make sure you are a normal IGA producer. If this reading is low it could invalidate your other results. It is always a good idea to get a copy of your test results.

That being said, there is about a 20% false negative rate on the blood tests; similar for endoscopy and biopsy. But even if you are not truly celiac, it does not mean that you do not have trouble with the ingestion of gluten. For every diagnosed celiac, there are at least two to three gluten sensitives/intolerants. And these people have the same symptoms and can have the same complications as diagnosed celiacs. Many medical professionals do not recognize this and tell their patients to eat gluten and be happy - they do not have celiac disease . For a lot of people it makes it harder to stick to the gluten free diet if they don't have the celiac label to pin upon themselves, but it is nevertheless just as important for them to eliminate the gluten since they are at the same risk of developing long-term complications from gluten consumption. And from your reading I am sure you are familiar with what some of those are - you do not want to go down that road.

I hope you find a GI doc who is knowledgeable about celiac disease, and if the complete celiac panel was not run initially maybe he will do that for you, as well as the endoscopy. Let us know how things turn out.