how accurate was your blood test for Celiac's?

[FINFAN]

Took DD in today for hers, she's 20 and on college break. The Gastro explained that you can get a false positive and really, the endo gives a far more accurate result. So has anyone been able to dodge the Endo? He prescribed an antibiotic for 10 days, and after that he will decide if she should try Align or not for some relief. Also, has anyone had any correlation to soy formula and celiac's? He was all over the fact that DD needed soy as an infant, even tho her childhood and teen years were symptom free. College is killing her. He also said they treat sme patients with celexapro, an antidepressant I think as the brain can mess up everything else...just a lot ot process. My DD bloats after a sip or 2 of water, so she finally said enough and went in.

 

[Owl's Friend]

I've always read the standard for diagnosing celiac is an endoscopy. (you also have to be consuming wheat, reg. amts of it) My ds had a scope at 2.5 yrs old. It wasn't bad. Prep was that he couldn't eat after midnight. Due to his egg allergies, he had to be put out completely for it (instead of a twilight snooze). Over in less than 30 min. No side effects afterwards (except for one icky looking poop).

 

[Singledad]

endo is the golden standard to diagnosing it. If you don't care about a doctor labeling it, just start eliminating it from the diet and see if she feels better. blood test is NOT very accurate. and some people feel tons better when they go on a gluten free, casein free diet. (this is why the soy thing is important.)

 

[FINFAN]

Thanks for the replies...I am guessing the blood test is just a standard starting point then. Looks like this summer is going to be changed up a bit before she heads back to school.

 

[clanmcculloch]

Since she needed soy formula as an infant, has she considered eliminated all milk from her diet?

My persnal opinion is that there are no false positive blood tests for celiac; only false negatives. I have never known a single person, including on online GI forums, we got a positive blood tests and didn't feel better going gluten free, even if they endoscopy said it wasn't necessary. Those antibodies are in your blood for some reason. Your body is generating the antibodies to fight what it deems to be an unhealthy foreign substance. If gluten wasn't a problem then why is your body producing these antibodies? Medical science refuses to answer this question and instead chooses to just say "I'm the doctor and I know best". OK fine, don't call it celiac. It may not be celiac. It IS an immune response to gluten though regardless of the label.

Have I been on my soapbox long enough now? Sorry, but I have very strong feelings on this subject. Boy myself and DD13 test negative for celiac via upper endoscopy (biopsies are abnormal, but not celiac specific results). We both have antibodies in our blood but neither of us were at the technically clinical level to call it celaic. We both react to gluten. If we just blindly accepted the tests then we'd both be very sick and my daughter's autism would also be much more severe than it is (she has neurological symptoms from gluten; we have definitely observed autistic issues worsten any time she's glutened).

 

[FINFAN]

Since she needed soy formula as an infant, has she considered eliminated all milk from her diet?

My persnal opinion is that there are no false positive blood tests for celiac; only false negatives. I have never known a single person, including on online GI forums, we got a positive blood tests and didn't feel better going gluten free, even if they endoscopy said it wasn't necessary. Those antibodies are in your blood for some reason. Your body is generating the antibodies to fight what it deems to be an unhealthy foreign substance. If gluten wasn't a problem then why is your body producing these antibodies? Medical science refuses to answer this question and instead chooses to just say "I'm the doctor and I know best". OK fine, don't call it celiac. It may not be celiac. It IS an immune response to gluten though regardless of the label.

Have I been on my soapbox long enough now? Sorry, but I have very strong feelings on this subject. Boy myself and DD13 test negative for celiac via upper endoscopy (biopsies are abnormal, but not celiac specific results). We both have antibodies in our blood but neither of us were at the technically clinical level to call it celaic. We both react to gluten. If we just blindly accepted the tests then we'd both be very sick and my daughter's autism would also be much more severe than it is (she has neurological symptoms from gluten; we have definitely observed autistic issues worsten any time she's glutened).

very intersting...we are in the infancy stages of solving DD's issues, she is kinda all over the map with symptoms, the first thing the Gastro honed in on was to rule out Celiac's. So now I am trying to learn about it, and other illnessnes/conditions that are similar. DD has had an unbelievable amount of change health wise since heading off to college...the kid was never at the doctor for other than her yearly well checks up to 17, now she has a Cardiologist, GP, Gastro,PT, and has gone to counseling for anxiety....we are just trying to get her less miserable. I think we will do as you guys have suggested and try a gluten free ( as best I can) week or so, see if there is any improvement. She was also told to try align...any thoughts on that? As far as regular milk etc., no, she had no restrictions or reasons to have any type of special diet growing up, matter of fact we called her the Fear Factor kid because she would and could eat anything in any combination. She is tiny, 5'3" 93-95 lbs. Well, again, thanks for the help and info.

 

[LindaBabe]

Lots of useful info on this thread, although technically, it's a dining review.http://www.disboards.com/showthread.php?t=2654661

 

[FINFAN]

Lots of useful info on this thread, although technically, it's a dining review.http://www.disboards.com/showthread.php?t=2654661

thanks!!!!!!