Results, Need Opinions Or Similar Situations

[Diem]

Okay so I just called my GP office (I so need to get a new one) They had the results but of course I needed to call to get them, God forbid they would call me (typical). Whomever I talked to (recpetionist) Said "oh yes they mailed you out information" Gee thanks for making me wait longer! Anyway back on topic...

 

My lactose test was postive (Go figure, I never even suspected this, but after the reaction to the test I figured as much.) But my Gluten test was all mid to high range but not sufficent to make me positive so the receptionist says. (Again why is she telling me this) So now what?

 

For years I have been dealing with issues and getting results such as GERD (had endoscopy 6 years ago to determine this) IBS (Diagnosed two months ago) Migraines since childhood (No test has shown why) weight lose, currently I am at the lowest weight I have been at since high school (almost twenty pounds since october) Bad enamel on my teeth resulting in various root canals and dental work, hair loss, joint and muscular pain, depression (treated at one time but I didn't like how I felt numb on medicine) brusing, rash, blood in stool, mild arthrits detcted by testing and numbness in fingers and now lactose intolerence. Given, I am new to researching Celiac Disease, but I have to believe that this is waht it is regarless of numbers on my blood work.

 

Has nayone else had this frustration and what have you done? I am going to go ahead and do an elimination test on my own but should I ask for further testing now or wait until I determine it personally, or just go trough to a new GP and start all over. I feel like throwing my hands up and saying I am insane.

 

I have been on a low carb diet for over ten years and don't eat bread or chips and that stuff mostly whole food, meat, veggies, fruit and yes dairy until now.

[kareng]

I wonder if they did any real Celiac tests.  Never heard of them being high but not positive?  I would get a copy and see what they actually did before you go off gluten.  But if you have been gluten-free for years, then it isn't going to be valid anyway.

[bartfull]

And if you haven't been eating much gluten for ten years odds are that the tests won't be valid anyway.

[Diem]

After all my reading I am assuming that too. Especially when I read things that say a person needs to consume the equivelent of 1-2 slices of bread a day, OMG I can't even imagine that anymore. I do know I am tired of feeling sick all the time and ready to start this new life and feel better. I am afraid of how awful i would feel if I did eat that much gluten to get the positve result needed. UGH. Thanks for the comments.

[SMRI]

I would wait to see the numbers before you really decide if you are positive or not.  "Mid to high" what??  If they were a 3 out of 4, ok, but if they were 8 or 9 with 0-4 being negative, 5-9 weak positive, 10+ being positive, I would say that you are positive given your symptoms and eating history.  I'd call today and get an appointment with a GI that specializes in Celiac.

 

Any chance they have an online system to check results? 

[Diem]

Thanks SMRI I called yesterday on the way home from work and told them to schedule the endoscopy. They said they'd call and then let me know when the appointment is. I'm going to go ahead and keep my same diet until I go to the appointment (sigh) I hate feeling this way.