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The Test Was Negative:(

taynichaf

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taynichaf Contributor
taynichaf
Posted

The doc said I atleast have gluten intolerance and either way can't eat gluten..but I have been eating fairly gluten free for awhile, unintentionally..aaand he only tested for two things, not the full panel, and I'm still anemic despite taking iron pills..

I think it was a false negative, but maybe not.. Is there anything else I can do to check? He would only schedule me an endoscopy of the test was positive..

Anyone else gluten intolerant?? Or does anyone else believe you're test was false?

Thank youuuuu

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taynichaf Contributor
taynichaf
Posted
  • Author

Oops! I swear I put this in a different category!

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

did you get a copy of the results?

 

Was the complete panel run?

 

ttg iga/igg

dgp iga/igg

EMA

 

total iga

 

The doc said I atleast have gluten intolerance and either way can't eat gluten..but I have been eating fairly gluten free for awhile, unintentionally..aaand he only tested for two things, not the full panel, and I'm still anemic despite taking iron pills..

I think it was a false negative, but maybe not.. Is there anything else I can do to check? He would only schedule me an endoscopy of the test was positive..

Anyone else gluten intolerant?? Or does anyone else believe you're test was false?

Thank youuuuu

kareng Grand Master
kareng
Posted

Did you get a copy of the tests from your doc?  Maybe he didn't even do the right tests?  Its been known to happen.

 

And this is the right place to discuss tests and results.

kareng Grand Master
kareng
Posted

did you get a copy of the results?

 

Was the complete panel run?

 

ttg iga/igg

dgp iga/igg

EMA

 

total iga

 

 

1 2 3 Jinx!  :D

 

We were posting at the same time!

nvsmom Community Regular
nvsmom
Posted

How frustrating for you! I really hope they come up with better tests for NCGI soon... I'm of the opinion that gluten intolerance is a spectrum, and that celiac disease is on the spectrum, it just happens to create intestinal villi damage and the type of celiac blood tests we have are (as I understand it) autoantibodies that respond to intestinal damage. That's only one type of symptom!

 

My children all tested negative to celiac disease (unlike their mom) but I am SURE that two of the three have some sort of gluten intolerance; one especially. There is a lot of eveidence that they do better gluten-free, and with a mother who is a celiac, it would make sense if the have it... I suspect false negative but in my view, NCGI is basically the same thing and requires the same treatment.

 

Good luck on the gluten-free diet.  :)

stanleymonkey Explorer
stanleymonkey
Posted

Our daughters ped told us gluten intolerance does not make you anemic but celiac disease does. I don't know if he's 100% correct but that's how we got a diagnosis

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taynichaf Contributor
taynichaf
Posted
  • Author

No, it was not a full panel..I asked for one, but they could only test for two out of the full panel. I will call and get a copy of the test. Thank you all <3 but is there any different between the lifestyles of gluten intolerance and celiac? Since I tested negative for celiac I feel like I don't have to be sooo strict..but I'm not sure.

mushroom Proficient
mushroom
Posted

Many of us on this forum have come to believe that gluten intolerance is a spectrum of disorders that has not yet been fully classified (the medical profession less than 18 months ago finallly accepted that there was such a disease entity as non-celiac gluten intolerance), and that celiac disease is only part of that spectrum, which by definition causes damage to the gut.  Other parts of the spectrum provoke dermatitis herpetiformis, the skin form of celiac disease, which is officially recognized as being celiac disease.  Another part of the gluten spectrum is the neurological form which can cause symptoms from migraine to brain fog, to mimicking MS.  Nobody has yet categorized the part of the gluten spectrum which does not do any of these things - i.e., it gives you diarrhea and bloating but does not damage the gut, the brain or the skin.  But we don't know yet what other damage it might do.

 

I personally feel that you are on a slippery slide if you allow your thinking to go down the path of "I don't have celiac and therefore I don't need to be so strict."  You have obvious evidence that gluten is harming you in some way.  I would not want to take the risk that there was other damage, such as predisposing me to lymphoma and other nasties, that we don't know about just yet.  I believe you should take it just as seriously as if you were celiac.

taynichaf Contributor
taynichaf
Posted
  • Author

Makes sense!! Thank you for the explanation! :)

I have a loooong list of symptoms, so I'm not going to even list them. I just didn't want to be acting like a "wannabe"celiac, if that makes sense?I wanted to be sure that the doctor said I was one, before I tell anyone else..but I will just say I'm a celiac now! Sooo happy thaaaat I'll finally get better:)

Thank you all sooo much! :)

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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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