Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone Had Negative Results From Dr Fine's Panel?

trying4faith

Anyone had negative results from Dr Fine's panel?  

You do not have permission to vote in this poll, or see the poll results. Please sign in or register to vote in this poll.

Recommended Posts

trying4faith Apprentice
trying4faith
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    2. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    3. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    4. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    5. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,864
    • Most Online (within 30 mins)
      7,748
    Jojo3
    Newest Member
    Jojo3
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.