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New With Questions On Getting A Diagnosis

joyinc

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joyinc Newbie
joyinc
Posted

Hi there!

this is my first post, and I thought that I would jump right in and introduce myself here. I was asking about celiac diagnosis on another website and someone was kind enough to direct me over here. I never thought that I would be celiac, because I thought that it was always terrible stomach pains after eating something with gluten in it. I support someone at work with celiac, so I have been reading more, and found out that it can have no stomach upset, but could cause brain fog, irritability, depression, lactose intolerance, nutritional deficiencies, and a whole mess of other things. I am basically all those things, and I already know that when i stop eating things with gluten in it, that I feel so much better.

However... its hard to stay away from them and i crave foods like that most of the time! So, I figure that if I had a diagnosis of celiac, that would be more serious because of the damage i could do over the long run.

So I went to my doc today and asked for some testing to be done. She wrote me up a script and told me that if i had an intolerance that it would show up 60% of the time, but if i was celiac, the test would show a 100% marker, or something to that effect. Yet from what I read about blood tests for celiac, they dont sound all that reliable. She wrote me a lab form that says: IgA tissue transgluteminase antibody (celiac), and she also checked off a box marked CBC.

Are these the tests that are faulty?

And another thing... I have been avoiding gluten and I hear that I need to be eating it for the test to pick up anything. Someone told me for about a month? Should I wait a month of going back to eating gluten to take the blood tests?

She told me that if something comes up with the blood tests that she would send me to a gastro-intestinal specialist for a biopsy.

I'm not really sure what else to do, and would really LOVE some advice.

Thanks so much!

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Aleshia Contributor
Aleshia
Posted
So I went to my doc today and asked for some testing to be done. She wrote me up a script and told me that if i had an intolerance that it would show up 60% of the time, but if i was celiac, the test would show a 100% marker, or something to that effect. Yet from what I read about blood tests for celiac, they dont sound all that reliable. She wrote me a lab form that says: IgA tissue transgluteminase antibody (celiac), and she also checked off a box marked CBC.

she should have done the whole celiac panel... I think there are 3 tests in it (?) Open Original Shared Link

CBC is your complete blood count... to look for anemia etc.

someone else can answer your questions better than me though as I'm new to this too and haven't been diagnosed yet

joyinc Newbie
joyinc
Posted
  • Author

hmmm, now i dont know if i should go back and ask for the rest of the tests, or just go for the one. i am totally second guessing myself right now, cause i have eaten a bagel every day for the past week and i feel ok. i was thinking that i would do that for a month for the test, would that be good enough ?

nora-n Rookie
nora-n
Posted

ome experts say one needs to be back on gluten for six months, some at least 3 months or six weeks, and it is impossible to say.

And one then needs to eat a lot of gluten, 0,3 grams per kg, that would be 21 grams if you weigh 70 kg.

https://www.celiac.com/articles/12/1/How-lo...gful/Page1.html

and it is utterly nonsense to say that it is 100%. It is only about 80% or less positive even in total villous atrophy, which means you have no villi left anywhere. After some weeks you have only patchy damage and some will have a positive ttg test.......it might take years, or forever.

And, one ould still need the total IgA test as well.

nora

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