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Thank you so much for your many replies :-)
I received many encouraging words to support us in our GF diet. Thank you !
We do feel grateful that we have found the solution . I am grateful that
there is so much more information out there. Keep going !
I am at an advantage because we home educate , so the diet is not such a big
deal for my son as there is not the peer pressure to eat what others are
eating. It is becoming a normal way for us all to eat.
I appreciated the advice to get my other children and myself tested, I need
to do that soon as their diets are rapidly becoming very low in gluten.
Many people gave me
www.enterolab.com
Excellent information .
and www.finerhealth.com
Unfortunately for us , these tests are not available in New Zealand. It
made sense to me that the antibodies have to be a certain level before they
spill into the blood and hence testing stools would be a way to pick up
intolerance to gluten in people who have little damage to the gut.
I also received as an attachment by Dr. Fine writing on the subject that was
helpful .
Most encouraging was this quote
"a negative test does not mean you do not have the problem. This is the
biggest pitfall of all because the only thing a very specific test, like
blood testing for celiac disease, can do is "rule in" the disease; it can
not "rule it out." If you've got very far advanced and/or long-standing
celiac disease, it is likely that the test will be positive. However,
several studies have now revealed that it is only those with significant
villous atrophy of the small intestine who regularly show a positive
antiendomysial or antitissue transglutaminase antibody, the specific tests
relied upon most heavily for diagnosis of gluten-induced disease. When there
was only partial villous atrophy, only 30% had a positive test. More
disturbing perhaps, were the results with respect to screening first degree
relatives of celiacs with blood tests. Despite some biopsy-proven early
inflammatory changes in the small intestine but without villi damage, all
blood tests were negative. "
My sister has coeliac, diagnosed at 32 . She said that she thought sore
stomachs, bloating , fatigue was normal! She said she can't believe how well
she feels. She had this all her life. But it took 30 or so years of eating
gluten for the damage to affect her iron levels to such a degree that
Doctors looked beyond heavy periods . We look forward to a time when the
disease can be picked up earlier and easier.
Others shared that they had negative blood work and then the biopsy was
clear : CD.
Genetic testing was suggested. This would not confirm CD but it may exclude
it. This I do think is our next step and we can do this on a GF diet :-) If
he does not have the genes then he has a issue with gluten but he does not
have CD nor will he develop it in the future.
Check that he is not IgA deficient , if he is, then his bloods will always
come back negative.
He may wish to do the gluten challenge when he is older.
I was also encouraged that we needed to take our health into our own hands .
I could not agree more !! Who is the most motivated to find our health?
Ourselves and our families.
One person wrote "My opinion is if you know your child is better on a GF
diet, keep him
on it. One day the medical profession will catch up with attentive
parents and be able to offer tests to confirm what you already have
figured out, but that day hasn't yet come " :-)
Indeed, but it is nice to be confirmed :-)
Thank You for your support and advice
Tarnya Burge
Mum to 6
* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *
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