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Worried about negative blood test

Luna15
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Luna15 Newbie
Luna15
Posted

A little background: I am 23 and have been having GI issues for about 7 years including; bloating, gas, cramping, constipation, diarrhea, and frequent canker sores, I also have chronic fatigue even after sleeping well. I always thought that people with celiac disease had much worse symptoms and figured I just had an intolerance.

I recently went to a doctor and got blood work done for celiac disease. He told me to make sure I was eating gluten before getting the test. During the holiday season I had been eating quiet a lot of gluten for about 4 weeks but had been mostly gluten-free before that. After the holidays I went back to mainly gluten-free for about 2 weeks then started eating gluten again for about 2 weeks before getting the blood work. After reading the posts on here I am now worried that I might get a false negative due to inconsistent gluten eating. 

Should I just keep eating gluten and opt for another test if the test comes back negative or should I just go gluten-free again? I am afraid without a diagnosis I will be more lenient about eating gluten and could potentially be further harming myself but on the other hand the GI symptoms when eating a lot of gluten are not pleasant. 

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Scott Adams Grand Master
Scott Adams
Posted

For now I'd wait to see how your results turn out, because it's still possible they could score high if you have gluten sensitivity. If they end up being below the threshold you may want to get retested to be certain. You should eat gluten daily for around 2 months before being tested, otherwise you may end up with false negative results. In your case it sounds like you'd need a formal diagnosis to stay on the diet, so a re-test might make sense depending on how your first test turns out.

Luna15 Newbie
Luna15
Posted
  • Author
6 minutes ago, Scott Adams said:

For now I'd wait to see how your results turn out, because it's still possible they could score high if you have gluten sensitivity. If they end up being below the threshold you may want to get retested to be certain. You should eat gluten daily for around 2 months before being tested, otherwise you may end up with false negative results. In your case it sounds like you'd need a formal diagnosis to stay on the diet, so a re-test might make sense depending on how your first test turns out.

I have heard that for the endoscopy to show positive results most people only need to be eating gluten for about 2 weeks prior. Is this true and do you think it is a good option if the blood work comes back negative?

Fenrir Community Regular
Fenrir
Posted

Do you know which tests they did and what the numbers were?
Often times GPs call weak positives "negative" which is incorrect. 

Yes, what you describe could cause a negative as well. Consider my TTG being only 8 (range is 0-3, many celiacs have TTGs way higher than that)when I had a Marsh Grade 3b which is significant damage on the biopsy. Had I stopped eating gluten or ate lower gluten mine may have come up negative. 

As far as how to handle the situation. It's best to get a diagnosis if you have Celiac Disease. The reason is that it will probably eliminate other possibilities or if you are in fact not a Celiac then you know that. 

 

cyclinglady Grand Master
cyclinglady
Posted
3 hours ago, Luna15 said:

I have heard that for the endoscopy to show positive results most people only need to be eating gluten for about 2 weeks prior. Is this true and do you think it is a good option if the blood work comes back negative?

An endoscopy is something to consider.  Your symptoms could be celiac disease or they could be something like Crohn’s which is common in young adults/teens.  Seven years of struggling with GI symptoms indicates that something is clearly wrong.  

I thought my little niece had celiac disease, but it turns out she had Crohn’s instead.  Her diagnosis was caught using a pill camera as her damage was beyond the reach of both scopes.  

Even if your celiac tests are negative, I would push for further testing.  Keep consuming gluten daily (1 to 2 slices of bread or equivalent).   You are correct in that you need to be consuming daily for two weeks prior to an endoscopy.   (Personally, I never had a positive on the TTG or EMA tests which were repeated many times.)   Ask for the complete celiac disease panel, if you can.  

  • 2 weeks later...
Luna15 Newbie
Luna15
Posted
  • Author
On 1/24/2020 at 8:55 PM, cyclinglady said:

An endoscopy is something to consider.  Your symptoms could be celiac disease or they could be something like Crohn’s which is common in young adults/teens.  Seven years of struggling with GI symptoms indicates that something is clearly wrong.  

I thought my little niece had celiac disease, but it turns out she had Crohn’s instead.  Her diagnosis was caught using a pill camera as her damage was beyond the reach of both scopes.  

Even if your celiac tests are negative, I would push for further testing.  Keep consuming gluten daily (1 to 2 slices of bread or equivalent).   You are correct in that you need to be consuming daily for two weeks prior to an endoscopy.   (Personally, I never had a positive on the TTG or EMA tests which were repeated many times.)   Ask for the complete celiac disease panel, if you can.  

Thank you for your input.

I asked my doctor for a referral for the endoscopy and he also ordered genetic testing to be done. Hopefully this can speed up the diagnostic process and I can finally get some answers.

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