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Anyone Had Negative Results From Dr Fine's Panel?

trying4faith

Anyone had negative results from Dr Fine's panel?  

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trying4faith Apprentice
trying4faith
Posted

Just trying to find out if everyone who gets tested gets back a positive finding...

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minivanmama0300 Newbie
minivanmama0300
Posted

Well, my dd came in under 10 on all gluten sensitivity panels, so yes we have had a negative.

trying4faith Apprentice
trying4faith
Posted
  • Author

Hm. I'm guessing though, that despite your test results, you still get sick if you consume gluten? (or why would you still be on the boards when you can be out eating everything in sight :)

That's disconcerting... I would hope that the tests are accurate...

nikki-uk Enthusiast
nikki-uk
Posted

Hi, my husband had negative blood results,but 'positive' biopsy showing villous atrophy.

I'm not sure I understand why,and it makes my husband think the docs have got it wrong-especially as he's seen no improvement in health on the gluten-free diet.

It's all so confusing!...

skbird Contributor
skbird
Posted

My results came back under 10 on all counts but I had been eating gluten-free for 5 months and reduced gluten for two years before that. I do have a gluten-sensitive genotype, but not Celiac.

Stephanie

jools Newbie
jools
Posted

my test results came back negative as well, but i had been on a gluten free diet already for at least 6 months. i get sick whenever i encounter gluten so the doc said that it was safe to just stay on the gluten-free diet.

Lesliean Apprentice
Lesliean
Posted

Yep, I was gluten-free for 2 and 1/2 months and high normal on Enterolab's tests. I e-mailed Dr. Fine the day I received his report (saying that while my report was within normal I could try a gluten-free trial if I was having symptoms) to get his recommendation. He wrote back that day advising me to go gluten-free because I had such a resolution of symptoms gluten-free and two copies of DQ1. I have the neurologically presenting genes (DQ1) that can reek havic with the entire body while showing negative on blood work (sometimes) and biopsy (almost always) and I was gluten-free at the time of testing.

Because of this conservative yet professional and completely up to date response I think Dr. Fine is exceptional. He does report negative results and yet doesn't miss the up to 50% of Celiacs that serology and biopsy does. I know this is controversial and blood work has its place but so many of us are missed by current testing methods (says Dr. Alessio Fasano with the Center for Celiac Research in his May 6th meeting) and some genes that predispose towards gluten sensitivity aren't even recognized by GI's even though they account for 2% of documented Celiac disease and 20% of gluten ataxia.(Open Original Shared Link).

Leslie

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gf4life Enthusiast
gf4life
Posted

People do test negative with Enterolab (while on a regular gluten diet), but you won't find many on this board. The only ones who will still be around are probably parents of kids who have tested positive, and they would most likely have at least one gene...

I have heard people say that when they had their whole family tested at least one member tested negative. But there is also that most of the people getting tested are symptomatic, which increases the amount of positives. If you didn't have symptoms, and didn't have family members who had it, why would you spend the money on the testing. Both the symtoms and the family propensity towards the disease increase the likelyhood of the results being positive.

God bless,

Mariann

snoopylian Apprentice
snoopylian
Posted

Leslie,

Does that mean you have two genes predisposing you to gluten sensitivity - like say 0501 and 1301 for example?

two copies of DQ1.

and

I have the neurologically presenting genes (DQ1) that can reek havic with the entire body while showing negative on blood work (sometimes) and biopsy (almost always) and I was gluten-free at the time of testing.
what does that exactly mean? Talk to me like I'm stupid :)

Thank you very much.

cindyann50 Newbie
cindyann50
Posted

My husband's tTg came back 6.5 and his endomysial ABY came back negative; he has no symptoms at age 71 with the exception of osteoporosis which was diagnosed 8 years ago. What does a low tTg indicate? I am ready to have Dr. Fine's testing done; we have a 21 year old daughter blood and biopsy diagnosed 1/05 and an autistic grandson age 12. I have 2 genes, DQ2 and DQ1, blood tests negative in 2000, all symptoms of DH. Any ideas?

kvogt Rookie
kvogt
Posted

cindyann50,

From your description, the osteoporosis clinches it for me. I'd bet he has celiac disease. I believe gluten sensitivity will be the cause of nearly all osteoporosis problems. How's his iron?

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      High DGP-A with normal IGA

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

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      High DGP-A with normal IGA

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