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Plane Turbulence

UNCHeel

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UNCHeel Rookie
UNCHeel
Posted

OK this is really out of left field but last week was the first time in my life that I didn't get sharp pains in my back when my airplane got into a bit of rumble and tumble and it's the first time I've flown since going gluten-free in Feb. I evenn the Pirate Ship ride when I was 10 and came of bawling b/c of the pain. It's gone now but I am just really curious how the gluten caused something so insane?

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missy'smom Collaborator
missy'smom
Posted

Who knows? Not much surprizes me anymore. Gluten really does a number on our bodies!

Nantzie Collaborator
Nantzie
Posted

The last three years of my undiagnosed days (18 years total) I developed sharp, shooting, shock-like pains in my back and hips. Any unexpected movement just killed me. No idea why that is, but I've heard other people mention it too. The only time I get it now is if I'm glutened.

If you know your genetic type, I'd be interested to know if you have DQ1, especially DQ1, subtype 6. Pain seems to be more common with DQ1.

Nancy

oceangirl Collaborator
oceangirl
Posted
The last three years of my undiagnosed days (18 years total) I developed sharp, shooting, shock-like pains in my back and hips. Any unexpected movement just killed me. No idea why that is, but I've heard other people mention it too. The only time I get it now is if I'm glutened.

If you know your genetic type, I'd be interested to know if you have DQ1, especially DQ1, subtype 6. Pain seems to be more common with DQ1.

Nancy

Hi.

I, too, get sharp often excruciating pain in my left hip and lower back (also joint pain) when glutened. Besides all the neat GI symptoms... I am double DQ1, subtypes 5 and 6... Tra la. Hope you feel better!

lisa

UNCHeel Rookie
UNCHeel
Posted
  • Author

Thanks for sharing everyone!!! I'll let you know when I get the genetic test what it says I am. So far I've just done the blood test and endoscopy. Which brings up another question...has anyone heard of anyone testing positive on both of those but neg on the gene thing?

Nantzie Collaborator
Nantzie
Posted
Thanks for sharing everyone!!! I'll let you know when I get the genetic test what it says I am. So far I've just done the blood test and endoscopy. Which brings up another question...has anyone heard of anyone testing positive on both of those but neg on the gene thing?

I've never heard of anyone testing negative for at least gluten intolerant genes actually. They say that most people carry at least the gluten intolerant genes (it's just that not everyone develops the intolerance).

But then again, people don't go around investigating these symptoms if they're not having serious problems. You don't come across celiac disease on a whim. So someone with no issues wouldn't have a reason to get enterolab testing.

I'd love to see someone with no symptoms, GI or otherwise, get enterolab testing just to see if the genes show up for them. But I don't know a single person that doesn't have at least some type of possible symptoms.

Nancy

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    • knitty kitty
      Dried Chickpeas

      By knitty kitty · Posted

      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver.  😺 I react to nutritional yeast the same way as if I were glutened.  Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten.  The proteins in rice, corn (maize), and chicken meat have them as well.   Some people with Celiac might tolerate them without a problem, but I need to avoid them.  For those still having symptoms, cutting these out of our diet may improve symptoms. 
    • trents
      Confused about HLA-DQ Celiac gene test result

      By trents · Posted

      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
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      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      Thank you, that is helpful! 
    • Scott Adams
      Confused about HLA-DQ Celiac gene test result

      By Scott Adams · Posted

      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      Dried Chickpeas

      By Aretaeus Cappadocia · Posted

      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
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