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This Is What I'm Afraid Of..........


Electra

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Electra Enthusiast

"The lab that does the testing does matter. Some labs have "normal" ranges set so high that practically no one tests positive even with biopsy-provable Celiac Disease. Remember, antibodies present means there already is tissue damage. People with levels just above baseline seem to respond to a gluten-free diet."

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Does that mean since my daughter had an AEA level of 4.4 that she is making antibodies for Gluten and therefore she is positive? Hmmmmmm that's what I was thinking!!


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chrissy Collaborator

angie, the info you printed comes from a site promoting enterolab---which is questionable to alot of people. it seems like i read in one of your earlier posts that a "real" diagnosis is important to you. so far it doesn't look like you are going to get a "real" diganosis from a doctor. you can do the testing with enterolab and i can guarantee you that you will get a diagnosis of being gluten sensitive, but there will be nary a few medical people that will accept the results. remember, you don't need to have a doctor's permission to go gluten free. if you are really sure this is a problem for you and your daughter----than go gluten free. everyone on here will be more than helpful in giving you all the info you need to do it, and you don't havae to have a "real" diagnosis to be a part of this board-----an awful lot of people on here don't have a real diagnosis, but they know they feel better gluten free-----which is really what matters when it's all said and done.

Electra Enthusiast

I didn't even realize that site promoted Entrolabs. As of now I'm not a big fan of Entrolabs, so I guess I'll keep digging for info.

In all honesty I have a problem with going Glutan Free if I do not have a diagnosis. I'm sure I will eventually go gluten free, but almost ANYONE would feel better going Glutan Free. It's obviously so much healthier to use fresh foods then those with preservatives, so just because going Glutan Free makes my symptoms go away does not mean that I have a glutan intollerance or that I have Celiac (this is just my opinion though). All it means to me is that I am FINALLY eating healthier and that my body will definitely repsond to that.

The diagnosis is important to me for one reason and one reason only. My health. My Dad was adopted and I'm not sure what is in our medical history, so if I have something that needs to be controlled and I go Gluten Free and start feeling better for years then I may miss something that is very important to saving my life. For now we are still searching for an answer and if I go Glutan Free and feel better I could still have issues that are prolonged because I feel better on the Glutan Free diet. I guess I just need to rule everything else out first, so I know that it will be the glutan and not anything medical.

This is way more complex then I anticipated it to be LOL!!

chrissy Collaborator

i don't think i could have put my kids gluten-free without a diagnosis, either. i recently read something by doctor green that said pretty close to what you just said about a real diagnosis being important---bcause some people will feel better gluten free at first, but then start to have other problems which are caused by other foods and they end up not really knowing what to eat. maybe someday this will all be a little easier to figure out. i went gluten free with my girls for a month hoping it would help my fibromyalgia----but i didn't make any difference for me.

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  • Posts

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      Thank you that’s really helpful, hopeful won’t have to have a biopsy.
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      That means the normal range (i.e. not celiac disease) would be a result less than 14.99.  Your result is WAY above that. Some gastroenterologists would diagnose that as celiac disease even without a confirming biopsy because it is more than ten times the top of the normal range.
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