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anna34

Celiac Or Gluten Sensitivity?

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I had my blood tested after my daughter was diagnosed through biopsy about a month ago. She has been gluten-free for a month and her symptoms are resolving - it's amazing how much energy she has now!

My TTG came back at 7.7 and I was told that anything under 5 is considered "normal". I was told that 5-8 is considered "intermediate" and that further testing is not required. This result has left me confused. Do celiac and gluten-sensitivity both cause elevated TTG numbers?

I'm struggling with this because my symptoms are not gastro in nature, they are more headaches and anxiety/depression related. I ate gluten-free for several days last week and started feeling better. Then I ate a small meal with gluten in it and within 10 minutes had a headache and felt terrible for two days. I'm back to eating gluten-free again and part of me wants to "test" myself again in a week to see if anything happens.

I guess I'm just wishing for a diagnosis.

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Thta's strange. I'm no expert on the tests but I thought it was either positive or negative (with a high incidence of false negatives and very rare false positives). There is not really a test for gluten sensitivity unless you are doing the controversial stool testing that Enterolab offers. If you want a clear diagnosis I think you need to go back to a full gluten diet and then get a new doctor to do the full celiac panel. TTG is just one of the blood tests. At the very least seek a second opinion on the interpretation of the blood test you did have. That sounds like a positive test result to me. If it helps think of it as being similar to a pregnancy test--you can't be just a little bit pregnant--if the line is positive it's positive no matter how weak the positve is.

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if you test yourself again after experiment with the gluten free diet- your results may be innacurate and falsly low & negative. like stated above- the ttg is only one test. my ttg was only a 7... and my antigliadin was solid negative. but my ema was positive. docs kind of left me hanging too.... i went on and off gluten for 2 more years... because like u- i needed some kind of Official diagnosis to keep me off the drug. i ordered the gene test thru enterolab just for the hell of it- and after i got a double DQ8-> & then after i researched my own blood test- i just self diagnosed. then after going gluten free- i got DH. so that was all i needed to stay seriously off of it.

then i got my thyroid diagnosis..... and looking at those antibody numbers- my thyroid disease may have started before the celiac- and was much more progressed. GLUTEN ALSO aggravates all thyroid antibodies- so the crap is really EVIL. im really really REALLY hoping that years of being gluten free will lower those antibodies enough to improve my life- cause meds can only help so much.

i hope you figure out what you're gonna do- but most importantly- u listen to your body and your instincts- if you ONLY listen to your doc- you may have to get a lot more sicker before getting any kind of diagnosis- AND know too that gluten could trigger any number of diseases you could be predisposed too. good luck to u :)

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On the lab testing, there is a scale for each test. It may read something like this: 5 < = negative; 6 - 9 = mildly positive; >10 = positive. So what happens when you are mildly or weak positive? You don't have it, but you don't not have it :blink: Now your daughter has diagnosed celiac disease and because the disease is genetically based she received at least one celiac gene from either you or her father. Her father has no celiac symptoms but you do. Do the math and estimate the chances that you are the one who passed on the celiac gene (and no, this is not a guilt trip I am laying on your :) ) It may be that you are well on your way to a positive score, but you are just going to have to do more damage to yourself before you develop a sufficient number of antibodies to score 10 or more. So far you have pretty much flunked the test, but is this really one that you want to pass? :o Now let us presuppose that in a year or two you are tested again, and this time you score 11. Bingo. So will you get your celiac diagnosis? No, they will probably insist you have an endoscopy with biopsy, and there is a strong chance that that test could end up being negative (there are plenty of false negative tests on both blood work and biopsy; false positives are extremely rare). So where does that leave you? It leaves you with a doctor still telling you you don't have celiac disease. And in the meantime you are probably a lot sicker than you were before.

Which brings us to gluten sensitivity. Celiac is just one form of gluten sensitivity. Dr. Allessano Fassio and his colleagues have proved that there are other forms of gluten sensitivity for which there is currently no means of testing. And interestingly enough, those with primarily neurological symptoms are the people who are most likely to test negative for celiac disease (since celiac disease by definition requires damage to the villi in the small intestine which is responsible for most gastro problems).

It is comforting to have a diagnosis to hang your hat on, but I would listen to my body, and if it told me it didn't like gluten I definitely wouldn't eat it.

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Thank you to everyone who replied to my post.

Mushroom: My husband tested a clear negative for celiac, and my grandmother has celiac - so I do figure I'm the one passing on the gene. I seem to be feeling better gluten-free, so I'll just stick with it and eat the same foods as my daughter. Question: Our two year old son also tested negative. Should he be re-tested when he is older?

On the lab testing, there is a scale for each test. It may read something like this: 5 < = negative; 6 - 9 = mildly positive; >10 = positive. So what happens when you are mildly or weak positive? You don't have it, but you don't not have it :blink: Now your daughter has diagnosed celiac disease and because the disease is genetically based she received at least one celiac gene from either you or her father. Her father has no celiac symptoms but you do. Do the math and estimate the chances that you are the one who passed on the celiac gene (and no, this is not a guilt trip I am laying on your :) ) It may be that you are well on your way to a positive score, but you are just going to have to do more damage to yourself before you develop a sufficient number of antibodies to score 10 or more. So far you have pretty much flunked the test, but is this really one that you want to pass? :o Now let us presuppose that in a year or two you are tested again, and this time you score 11. Bingo. So will you get your celiac diagnosis? No, they will probably insist you have an endoscopy with biopsy, and there is a strong chance that that test could end up being negative (there are plenty of false negative tests on both blood work and biopsy; false positives are extremely rare). So where does that leave you? It leaves you with a doctor still telling you you don't have celiac disease. And in the meantime you are probably a lot sicker than you were before.

Which brings us to gluten sensitivity. Celiac is just one form of gluten sensitivity. Dr. Allessano Fassio and his colleagues have proved that there are other forms of gluten sensitivity for which there is currently no means of testing. And interestingly enough, those with primarily neurological symptoms are the people who are most likely to test negative for celiac disease (since celiac disease by definition requires damage to the villi in the small intestine which is responsible for most gastro problems).

It is comforting to have a diagnosis to hang your hat on, but I would listen to my body, and if it told me it didn't like gluten I definitely wouldn't eat it.

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Thank you to everyone who replied to my post.

Mushroom: My husband tested a clear negative for celiac, and my grandmother has celiac - so I do figure I'm the one passing on the gene. I seem to be feeling better gluten-free, so I'll just stick with it and eat the same foods as my daughter. Question: Our two year old son also tested negative. Should he be re-tested when he is older?

Yes, you will want to re-test your son. I have read the false negative rate is about 20% (meaning 20% of celiacs test negative even when on a full gltuen diet). This rate increases in small children--they are more likely to have a false negative. If you plan to retest him then you want to keep him on gluten. If he is gluten light (only eating gluten when out of the house) then in the months prior to testing have him eat a full gluten diet--the equivelant of 3-4 slices of bread everyday for three months.

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