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

Is It 1/133 Have celiac disease And 1/90 Have Gluten Sensitivity?


Jnkmnky

Recommended Posts

Jnkmnky Collaborator
:mellow:

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



Celiac.com Sponsor (A8-M):



nettiebeads Apprentice
Is the sensitivity the inherited gene? I'm neg for all things, but seriously can't have gluten and the longer I'm off it, the worse the symptoms of what was once a bit of gluten here and there. But I'm NEGATIVE. I'm confused. My son has the celiac disease. My other two kids are neg all around. I've read Dangerous Grains, I've done lots of other reading, but I'm getting confused anyway. Sorry if the answer is obvious. :blink:

You may not have what is now proven to be the celiac genes. Or the sensitivity genes. There may be other genes involved in this disease that haven't been recognized or marked. And don't ever be sorry for being confused. Even the learned medical community doesn't agree!!!! How are we as lay people supposed to know?

You're listening to your body and taking care of it and your children's needs. That's the most important.

Annette

Guest nini

I think that there are far more people that are gluten sensitive AND celiac than are even remotely considered at this point.

I'm convinced that the epidemic of disease in this country is directly in relation to the prevalence of gluten in practically EVERYTHING.

As you've read in Dangerous Grains, wheat is toxic. Humans aren't designed to digest it. It's Poison period. Only some of us are the proverbial "canary in a coalmine" and we are reacting to it in much more obvious and detectable ways.

Rachel--24 Collaborator
I'm neg for all things, but seriously can't have gluten and the longer I'm off it, the worse the symptoms of what was once a bit of gluten here and there. But I'm NEGATIVE.

Well I agree with everything Nini wrote but was just wondering....what tests did you have done? You could always do Enterolab but obviously your son got his genes from someone. Did you have gene testing done? IgA deficiency?

Btw...cool avatar...thats gotta be my favorite so far. Like the new quote too. Is this what you were busy doing when you missed all the action? :P

Jnkmnky Collaborator
:mellow:
debbiewil Rookie

As far as I know, Prometius only does the blood tests, it doesn't do the DNA tests. I think it just does this panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue

Transglutaminase (tTG) IgA

Total Serum IgA

That isn't going to tell you if you have the genes for gluten intolerance or celiac, even the few that have already been identified.

With the celiac tests, there really is no such thing as a completely negative test - there's only NOT POSITIVE tests. If the damage is minor, the test will not be possitive. If a person is not reactive, the test will not be positive. That doesn't mean it's negative, it just mens that it's not positive. Even the biopsy can't rule OUT celiac, it can only rule it in.

Think of it this way (I'm slowly turning grey, so this makes lots of sense to me.)

As you start to age, your hair will start turning grey. You might start seeing one or two gray hairs, especially if you have dark hair to start with. A year or so later, there are more. It takes several years, maybe a decade or more, for all the hair to turn grey. If during the first year or two, you closed your eyes, so you couldn't see where the grey hairs were, and just randomly plucked a couple of hairs from your head, your chance of getting a grey one would be pretty slight. After 5 years, you might have a better chance of getting a grey hair, but you could still easily get all dark hairs. It might take many years before there are enough grey hairs that you are pretty sure of getting one.

We have millions of villi in our bodies. Even if a few are damaged, it might not show out of the normal range on tests. It can often take many, many years before sufficient villi are damaged to give positive results on the tests. But there are still damaged villi, and there is still damage being done to your body, just like there are still grey hairs if you look for them.

Debbie

Jnkmnky Collaborator
:mellow:

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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast
As far as I know, Prometius only does the blood tests, it doesn't do the DNA tests. I think it just does this panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue

Transglutaminase (tTG) IgA

Total Serum IgA

That isn't going to tell you if you have the genes for gluten intolerance or celiac, even the few that have already been identified.

With the celiac tests, there really is no such thing as a completely negative test - there's only NOT POSITIVE tests. If the damage is minor, the test will not be possitive. If a person is not reactive, the test will not be positive. That doesn't mean it's negative, it just mens that it's not positive. Even the biopsy can't rule OUT celiac, it can only rule it in.

Think of it this way (I'm slowly turning grey, so this makes lots of sense to me.)

As you start to age, your hair will start turning grey. You might start seeing one or two gray hairs, especially if you have dark hair to start with. A year or so later, there are more. It takes several years, maybe a decade or more, for all the hair to turn grey. If during the first year or two, you closed your eyes, so you couldn't see where the grey hairs were, and just randomly plucked a couple of hairs from your head, your chance of getting a grey one would be pretty slight. After 5 years, you might have a better chance of getting a grey hair, but you could still easily get all dark hairs. It might take many years before there are enough grey hairs that you are pretty sure of getting one.

We have millions of villi in our bodies. Even if a few are damaged, it might not show out of the normal range on tests. It can often take many, many years before sufficient villi are damaged to give positive results on the tests. But there are still damaged villi, and there is still damage being done to your body, just like there are still grey hairs if you look for them.

Debbie

Prometheus does do the DNA tests but only for the 2 main genes of celiac(the DQ2 and DQ8 genes)

All of the genes involving gluten sensitivity and celiac have not been identified so it is possible for gluten not to agree with you even when you do not have a gene that would say that. I believe it is more common than people believe. I have heard that 1 in 90 have celiac but that number ranges on which studies you look at..my guess is way more people have some degree of sensitivity to it. People have overused it for so long and it's coming back to bite us all in the butt.

CMCM Rising Star
Is the sensitivity the inherited gene? I'm neg for all things, but seriously can't have gluten and the longer I'm off it, the worse the symptoms of what was once a bit of gluten here and there. But I'm NEGATIVE. I'm confused. My son has the celiac disease. My other two kids are neg all around. I've read Dangerous Grains, I've done lots of other reading, but I'm getting confused anyway. Sorry if the answer is obvious. :blink:

I probably won't be much help here because I'm as confused as anyone. I'm beginning to think no one truly understands this whole thing. I read that some doctors/researchers want to eliminate the term celiac disease and just call it all gluten sensitivity. They make it sound like gluten sensitivity CAN lead to celiac disease, which seems to be the defined villi damage. If there's no villi damage, then is it still in the category of gluten sensitivity? I myself tested with one gene for celiac and one for gluten sensitivity. So which one governs my current symptoms? I can't figure any of this out!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,015
    • Most Online (within 30 mins)
      7,748

    Rockette47
    Newest Member
    Rockette47
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
    • JoJo0611
    • Martha Mitchell
      Scott I also have different symptoms than most people. It affects me bad. Stomach ache, headache, nauseous, heart racing, whole body shaking, can't walk then my throat starts to close. It attacks my nervous system. The only thing that saves me is a 1/2 of Xanax...it calms down my nervous system 
    • Martha Mitchell
      Scott Adams. I was dealing with a DR that didn't care about me being celiac. I repeatedly told him that I was celiac and is everything gluten-free. He put an acrylic lens from j&j. I called the company to ask about gluten and was told yes that the acrylic they use has gluten....then they back tracked immediately and stopped talking to me. The Dr didn't care that I was having issues. It took me 6 months and a lot of sickness to get it removed.... which can only happen within 6 months. The Dr that took it out said that it was fused and that's why I lost vision. If they would have removed it right away everything would be fine. He put in a silicone one that was gluten-free and I've had no issues at all in the other eye. Do not do acrylic!
×
×
  • 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.