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Hi there :)

my name is alexandra, i'm almost 21 and i'm a week out from getting the blood work back for my diagnosis.

my story is quite crazy. to keep it short, i've been reading this forum for about a year and decided to become a member today :) i'm trying my hardest to make the most out of this new life style.

i went to the doctor on and she said that with my symptoms, blood work really wasnt unnecessary; she's pretty sure I have a gluten problem. but I decided that for a peace of mind (and for my husbands peace of mind), I needed to get the blood work done. I've been gluten free off and on for a while, but I realize that I'm just being stubborn and I really do feel better not eating any gluten (went to Applebees last night, ordered gluten free and still got really sick today).

I'm just here for support.. and to support others if I can :)... this new life style definitely takes some getting used to!!

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Eeeek, applebees has a habit of having major CC issues :( not good.

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Welcome DATY!

Glad you have been able to determine your body doesn't like gluten.

Were you gluten-free in the months before your blood tests were drawn? If so, they may be falsely negative - even gluten-lite can reduce the amount of antibodies measured in the celiac panel.

It is also possible that you have Non-Celiac Gluten Intolerance. NCGI has many of the same symptoms of Celiac Disease, but no antibodies are produced in reaction to gluten consumption. The only test for NCGI is the complete elimination of gluten. Take a look at the "Newbie 101" thread and ask questions with anything that you find confusing. The transition is very tough, but it does get easier with time and knowledge.

Good luck to you :)

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Welcome DATY!

Glad you have been able to determine your body doesn't like gluten.

Were you gluten-free in the months before your blood tests were drawn? If so, they may be falsely negative - even gluten-lite can reduce the amount of antibodies measured in the celiac panel.

It is also possible that you have Non-Celiac Gluten Intolerance. NCGI has many of the same symptoms of Celiac Disease, but no antibodies are produced in reaction to gluten consumption. The only test for NCGI is the complete elimination of gluten. Take a look at the "Newbie 101" thread and ask questions with anything that you find confusing. The transition is very tough, but it does get easier with time and knowledge.

Good luck to you :)

thank you for the warm welcome! I'm still getting the hang of this forum..

I wish I had known about applebees infamous CC issues. I woke up feeling very ill and then it dawned on me :(

As for being gluten free before my test, I wasn't very strict... at all! teriyaki stir fry the Monday before my test and Diet coke (Carmel Coloring) the day before.

I also had no idea the many ways I was CC my body - spices, cooking pans, GV brand of food from WM.. :blink: I never even realized! so I'm pretty sure it'll come up positive.

I'm doing some research on the NCGI, thats very intersting! Never heard of it before.

I'm sure I'll be asking many many questions about my new life style, hopefully nobody minds!!

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Caramel color is not a concern. All Coke versions are gluten-free, as are all variations of Pepsi.

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hey alexandra! im in a similar position! im almost 21 and was just diagnosed celiac a couple of months ago! its tought to get into, but its great feeling so much better!

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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