Negative test...doctors reaction. OUCH!

[larann78]

OUCH. Just got my test results back and I was a "1" on both the IGG an IGA...so, negative. She said she was surprised because she was just sure that the test would come back positive. Ok, cool...so now what? I'm not bloated when I'm off gluten. I don't have stomach pain. I don't have diarrhea. I don't have headaches. I have more energy. She just told me that I can either eat it or not because "gluten intolerance isn't a thing and either you're celiac or you're not". OUCH. Soooooo, it's in my head?

[Victoria1234]

19 minutes ago, larann78 said:

"gluten intolerance isn't a thing

It IS a thing! Many people here have it. Stay off gluten and feel better!

[Gluten-free-01]

25 minutes ago, larann78 said:

OUCH. Just got my test results back and I was a "1" on both the IGG an IGA...so, negative. She said she was surprised because she was just sure that the test would come back positive. Ok, cool...so now what? I'm not bloated when I'm off gluten. I don't have stomach pain. I don't have diarrhea. I don't have headaches. I have more energy. She just told me that I can either eat it or not because "gluten intolerance isn't a thing and either you're celiac or you're not". OUCH. Soooooo, it's in my head?

No, it's definitely not in your head. The doctor doesn't know what she's talking about - ignore her and act as if the test results were positive. NCGS is a real thing. 

[Jmg]

48 minutes ago, larann78 said:

She just told me that I can either eat it or not because "gluten intolerance isn't a thing and either you're celiac or you're not".

It most certainly is. She's talking out of her.....

 

er

 

Stethoscope...

There's some science stuff here if you're curious, but suffice to say that a negative celiac test doesn't necessarily mean you don't have an issue with gluten. 

Now it may be you didn't do a full blood panel, I didn't and I always wonder about that, because some celias test only on one of the markers. So you can if you wish try and get the DGP test which you don't mention. 

Or you can get on with feeling better and stay off gluten. In which case there's some advice in this thread.

Best of luck

Matt

[cristiana]

A friend of mine had some serious neurological symptoms going on.  She also had a rash.   I don't think anyone ever thought the problem might be gluten (apart from me!), but she is a great baker and spent a few months baking stuff for a friend who was told to go gluten free.  So she kept this friend company, eating all this stuff. All the symptoms went away!  She then went on the gluten challenge so the doc could test her for celiac disease and the results came back negative.  The return of the symptoms when she did the challenge was enough to tell her that gluten was bad news for her and she has kept off it ever since.  NCGI is real. 

But I agree with Matt - the full panel is may well be worth following up.  I never took notes but my gastro said some of my figures weren't at all convincing, but one was absolutely sky high.  If the whole panel hadn't been done I'd still be wondering, I guess.

[cyclinglady]

Your doctor can not rule out celiac disease without 1) doing the complete panel which includes the DGP and the EMA and 2) even if negative (some 10% of celiacs are seronegative), and celiac disease is still strongly suspected, intestinal biopsies are ordered to confirm or disprove a diagnosis.  

The gluten-free diet can be beneficial to see if symptoms improve, but some celiacs are asymptomatic (sounds like this does not apply to you).  

You can get a second opinion, more testing, or just go gluten-free for life.  If you do opt for testing, you must be consuming gluten daily for up to 12 weeks or the blood tests will be invalid.  

[ssmith]

On 10/31/2017 at 10:32 AM, larann78 said:

OUCH. Just got my test results back and I was a "1" on both the IGG an IGA...so, negative. She said she was surprised because she was just sure that the test would come back positive. Ok, cool...so now what? I'm not bloated when I'm off gluten. I don't have stomach pain. I don't have diarrhea. I don't have headaches. I have more energy. She just told me that I can either eat it or not because "gluten intolerance isn't a thing and either you're celiac or you're not". OUCH. Soooooo, it's in my head?

So sorry about your experience!! I have had so many uneducated people say the exact same thing to me (although I haven't done testing so i am not quite there yet) but at least my doctor has admitted that sensitivity is a thing. I would stick to your guns and keep doing what is best for your body! If your symptoms got better than I would stay off gluten. That is my plan even if my test results are negative.