And The Results Are.....negative?!

[erin24]

Well, last week my dr ordered a full panel celiac blood test and my dr left a message on my machine today saying the results are negative.

I am VERY frustrated b/c I want to be able to put a finger on the thing that is causing me to feel so bad. I feel like I am a square one again.

I am going to ask the dr to fax me my results so I can see them for myself and to see if they truly did the full panel.

As of now I have only avoided large obvious foods that contain gluten. I am going to try a gluten-free diet for several weeks/months and see how I feel.

Anyone relate?

[aikiducky]

I had a negative blood test result as well. I went gluten free anyway, and I'm feeling great, so I'm sticking to the diet. I know it's a frustrating and uncertain time though, when you don't know for sure yet. I hope the diet will work for you.

Pauliina

[ravenwoodglass]

Well, last week my dr ordered a full panel celiac blood test and my dr left a message on my machine today saying the results are negative.

I am VERY frustrated b/c I want to be able to put a finger on the thing that is causing me to feel so bad. I feel like I am a square one again.

I am going to ask the dr to fax me my results so I can see them for myself and to see if they truly did the full panel.

As of now I have only avoided large obvious foods that contain gluten. I am going to try a gluten-free diet for several weeks/months and see how I feel.

Anyone relate?

Yep, if they had reccommended the gluten-free diet to me when they first started doing their worthless (for me) tests I would have been diagnosed at least 5 years sooner. And I might not have the residual damage that I have. If the diet helps do it and stay with it no matter what the blood tests show. Interestingly enough once they figured out gluten was a problem they blood tested my kids and both came up positive. Unfortunately too late to help them with growth problems.

[jnifred]

yep, same here......I would still like to know exactly what I have, but for now I just tell someone I have discovered I am gluten intolerant, like being lactose intolerant. And I found out around Halloween last year, I can definetly tell when I accidentally eat gluten now. In the past month I have decided I really need to watch it closer. My rhuematoid arthritis seems to flare up when I eat gluten and I have 4 small boys to take care of, don't have time to be feeling like crap hanging out in the bathroom. I have gotten pretty good at packing things for me to eat on the run that are healthy and taste good. Good luck.

[Aetheana]

I'm gluten intolerant with negative blood work as well.

Just do it, i say, go gluten free for a month and see if things get any better.

Proof is in the pudding, sometimes, not just in the blood!

[CarlaB]

My tests came back negative as well. The biopsy did, too. I had figured out that wheat made me ill about three years before the blood test, but did not eliminate all gluten from my diet. Maybe this is why my blood test came back negative. I went on a gluten challenge before the biopsy and was very ill the whole time; if you read the list of symptoms, I had almost all of them. My oldest daughter and husband had to take over the things I normally do (we have six kids, infertility was one problem I did not have!). Whenever I go into denial because of my negative (actually, inconclusive) tests, my daughter and my husband assure me that I'm crazy and that I will not be consuming any gluten around them. I am waiting for my Enterolab results, but no matter how they come back, I realize that I get very sick from gluten. I am one of those who feel bad if contaminated by a crumb. It seems apparent to me that gluten can make you sick even if the docs can't expain why. If you feel better not eating it ... don't.

[Matilda]

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[erin24]

Ask what the numbers are.

I called today to have the results faxed to me and they said they would have to see and they will call me back. They said I will probably have to come pick up the results. I guess I could just have them tell them to me over the phone. Kinda frustrating though.

Well, I am glad to hear that people with negative blood work felt better after going gluten-free. I just want to feel better. I have started the gluten-free diet as of this morning and I am excited to see how things go.

Do you guys think that the blood test are just not very reliable? Or, do you think that most people are just gluten intolerant? The thing is I have a lot of the symptoms of celiac. For example, I am tired ALL of the time, brain fog, no enamel on teeth, etc. I assumed that those symptoms were the result of malnutrition caused by celiac resticting absorbtion of nutrients...So, if I am only gluten intolerant what is causing those symptoms? Can gluten intolerance cause malnutrition? Am I making sense? What do yall think?

[Guest nini]

I think that the tests are not as sensitive as they should be... I think Gluten Intolerance is just the early stages of Celiac Disease and I also think that the positive dietary response is the BEST diagnostic tool...

So, just go gluten-free, stick to it and see if your symptoms improve!

[Matilda]

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[moonunit]

Hi, this is my first post here! I'm in an odd situation, but maybe you guys have heard this story before...

I had a blood panel last week and on Monday my primary care said I tested positive for celiac sprue and to go on the diet immediately. She set up an appointment with a gastro. I called the gastro and said "don't I need to wait to start the diet until after the biopsy?" They said no, start it right away, so I did.

Friday I went to see the gastro, and he says all casually that I do NOT have celiac disease, because my blood tests were only "borderline positive."

HUH?

For a bit of background, I was diagnosed with Crohn's in 1993, then went back in 2002 for a second opinion because my meds were doing nothing and I was very dissimilar to others who were Crohn's sufferers. That first gastro did a colonoscopy and said it was negative for Crohn's. That was the last I'd thought about Crohn's until this week, when the new gastro Friday said that my symptoms were due to active Crohn's rather than celiac disease. (I went in for the celiac panel because my aunt tested positive and when I read the symptom list I said "ohhhhh, so THAT's what it is!" It sounded exactly like me, down to the weird circular rash!)

Meanwhile, clearly one of the doctors I saw this past week is dead wrong, but who? Is it possible to have a false POSITIVE for celiac if you maybe have Crohn's instead? Can you have both diseases at once? Why would my gastro think that a positive blood test wasn't an indication?

(By the way, he did schedule a biopsy for a couple weeks from now, and I'm back on a normal diet until that date...)

Just wanted to see if anyone had any insight. This is so confusing, and believe me, after all that has happened and all I've read, I'll be an advocate for celiac disease awareness whether or not I have the disease! This is insane, and no way to treat such a common condition!

[Guest nini]

Oh Good GREIF!!!!!

First of all, a borderline positive is (da da da POSITIVE!) and most GI docs are reluctant to dx Celiac until they verify full blown total villous atrophy. IN MY OPINION, this is a dangerous and ignorant stance on the part of the GI docs. Your primary is correct. You not only have a genetic predisposition to it but you have positive blood work. I would forget the GI doc. Go back on the gluten free diet and don't worry about any more testing, you have your answer.

Secondly, you may have Chrons, but I believe that Chrons is a secondary illness CAUSED BY Celiac. I believe that you will find that your symptoms start to go away once you are completely gluten-free. Give it a good 6 months to 2 years before you should expect to notice major improvements. If you have Chrons also, you can treat that even if you are firmly gluten-free. And I'm gonna put my bets down that YOU DO NOT HAVE CHRONS, You have Celiac. Good news though, it's completely treatable by sticking to the gluten-free diet for life, no cheating.

[4getgluten]

I don't understand why so many doctors are reluctant to diagnose Celiac or Gluten Intolerance. It's crazy! I tried a gluten-free diet on my own. Six weeks into the diet I told my GI that I started a gluten-free diet and was feeling a lot better. He says "oh, we should test you for Celiac." DUH! Why hadn't he already tested me for Celiac? He’d tested me for everything else.

Anyhow, I had the blood test done, which came back negative – not a surprise, since I was already gluten-free. My GI actually told me since the blood work was negative, I couldn’t have Celiac and I should go back to eating a normal gluten-full diet. The fact that I was feeling so good on a gluten-free diet meant nothing to him.

Luckily I didn't pay any attention to his advice, and I went on my gluten-free way. I've been gluten-free for a year now, and I've never felt better. I agree with Nini that a positive dietary response is a diagnosis. I think the blood test for Celiac is not fool-poof. Even if your blood work is negative you could have Celiac or at the very least be sensitive to gluten.

[Guest Robbin]

OMG!!!WHAT IS WRONG WITH THESE DRS? They argue about negatives with dietary response, they argue about positives with every symptom in the book. What in the heck are they telling them in med school? It must be like--"All you future drs., do not dx celiac disease NO MATTER WHAT! Keep the patients sick for pitys' sake so you can churn out more meds and keep the waiting room full. Sorry, I should probably post this on another thread, huh? Anyway moonunit, welcome, you are among friends, and listen to your own body. This is soooo nuts. I cannot think of any illness that is so misdiagnosed and fiddled around with as celiac. It must be money and some kind of out-dated thinking in the medical schools. Probably goes back to the colonization of America. Trying to disassociate itself from Europe so much that now its ingrained in the medical community. Kind of like a tradition gone crazy. Geeeeez, people are sick and dying from this stuff. I am freaking losing my sight. My kids and a LOT of other peoples' kids are very sick. I am so angry.

OK, sorry, I am finished with this rant.

[Leigh]

I just had a negative result as well.

IgG 14 units (<20 is supposedly negative)

IgA 5 units

TtG 3 units

I don't understand it. I have never had problems and then boom 4 months ago developed IBS-like symptoms. I went gluten-free for a week and my symptoms almost disappeared completely. I felt great. I reintroduced gluten back into my diet for the next week and once again, symptoms reappeared. I thought for sure my results would be positive. I should also add that auto-immunes diseases are fairly prevalent in my family: Juvenille diabetes, Juvenille arthritis, Viteligo, Pernicious Anemia. None of this seemed to phase my GI doctor. I haven't talked to him about my negative test results but I'm sure he'll blow me off.

I just was hoping it would be a clear answer. All I know is I'm now off gluten and symptoms are once again, GONE.

[4getgluten]

Leigh - You sound like so many of us. Unfortunately you may never have a definite answer. It's wonderful that a gluten-free diet is helping you. You'll find a lot of great support here, and a ton of information about the gluten-free diet.

[RoseNNJ]

I just got my blood test results, Negative. I am not surprised. I was off of Gluten for 3 weeks and had the test.

[Ksmith]

This is all so crazy! I don't have any health insurance really, so I haven't gone in to get tested, but now I figure, why even bother? I'd just be wasting my money! Through changing my diet I know that I cannot eat gluten, however I am worried that I may be allergic to other stuff as well. I guess I just need to wait until I get out of grad. school, get a job with health insurance, and get tested then. I can't believe all the misdiagnosis, and I strongly believe that if they could prescribe you something, then they'd be diagnosing everyone with celiac!

[guy220d]

My doctor sent me a note last summer telling me my panel was negative. I always thought that was odd and tried several times to get the results. Finally in Feb. I went into the office a requested a copy of my results. In my case, my IgG antigliadin was four points over positive. I can understand why my doc thought the panel was negative because the IgA antibodies were all low; but some people, maybe even me, don't produce much IgA's. Anyway, because of the original note, I really went gluten crazy last fall and winter and I've really been suffering since.

[RoseNNJ]

They still want me to go in tomorrow for the Biopsy. I doubt eating G for only 9 days is going to find any damage.

The Dr is supposed to call me later today. I am gluten-free from this moment on!

[erin24]

My doctor sent me a note last summer telling me my panel was negative. I always thought that was odd and tried several times to get the results. Finally in Feb. I went into the office a requested a copy of my results. In my case, my IgG antigliadin was four points over positive. I can understand why my doc thought the panel was negative because the IgA antibodies were all low; but some people, maybe even me, don't produce much IgA's. Anyway, because of the original note, I really went gluten crazy last fall and winter and I've really been suffering since.

Yah know it has been a big headeache trying to get my blood work results from my dr too. All they did was call and leave a message on my machine that my results were negative. I have called their office at least 5 times asking them to fax me the resutls. I have yet to hear anything. I have also asked them to fax the results to my GI specialist...they still haven't it seems like they don't care and are purposely trying to make this difficult. Go figure. All I want to do is figure out what is wrong with me.

[RoseNNJ]

My doctor sent me a note last summer telling me my panel was negative. I always thought that was odd and tried several times to get the results. Finally in Feb. I went into the office a requested a copy of my results. In my case, my IgG antigliadin was four points over positive. I can understand why my doc thought the panel was negative because the IgA antibodies were all low; but some people, maybe even me, don't produce much IgA's. Anyway, because of the original note, I really went gluten crazy last fall and winter and I've really been suffering since.

If you have a high IgA is that considered positive?