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New Member From Mi.
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Hi everyone !! My name is Wendy , you can call me w8in :) I have just had a blood test yesterday for Celiac of course it is not back yet. But I have been struggling with symptoms for a very long time, and my Dr. Would just give me a pill or kinda sluff it off as a minor complaint. Then I was talking to my daughter because she was having issues and my other Daughter chimed in and said maby you have Celiac. I looked it up and called my Doctor, he ordered a blood test, they made a mistake on the blood test, so I went in and had another. and of course it is a holiday weekend! haha (my luck) but my Dr. still just doesn't think it is Celiac. After this blood test comes back I am going to go on a Gluten Free diet no matter what the results! A friend of mine said "You hope your Celiac?" I said I want to know!! I want to know! What is wrong with me!! It would be so easy to change my diet!! I'd rather do that than have to take pills!! I am so sorry this is so long ...... so now I am w8in4test :) I am glad I found this site!! TY :) 

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Hello & Welcome

 

Doctors   at  times  drive  me insane.... Do you know  which  blood  panel or  tests  you  had  done? (The  last  time) I  understand  you  are  willig  to  accept  a  celiac  dx's ,  its  way better  dx's  than  the  big C..  Who  wants  drugs  that kill off  the liver, surgeries  that  change  our  lifestyle not  to mention  the  pain & healing...&  the  one  I  dislike  is  doctors  telling  us  its  all in your  head....

So I  agree  if  you must  have  a  illness  let  it be  celiac  or  gluten  sensitive,  we  can  control this  baby  by the  way  we  eat. It  isn't  always   convienient,   &  does  have  a learning  curve &  is  more  costly  but  the outcome  is  a  wonderful, full  healthy life....

Welcome  aboard

 

mamaw

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Hello & Welcome

 

Doctors   at  times  drive  me insane.... Do you know  which  blood  panel or  tests  you  had  done? (The  last  time) I  understand  you  are  willig  to  accept  a  celiac  dx's ,  its  way better  dx's  than  the  big C..  Who  wants  drugs  that kill off  the liver, surgeries  that  change  our  lifestyle not  to mention  the  pain & healing...&  the  one  I  dislike  is  doctors  telling  us  its  all in your  head....

So I  agree  if  you must  have  a  illness  let  it be  celiac  or  gluten  sensitive,  we  can  control this  baby  by the  way  we  eat. It  isn't  always   convienient,   &  does  have  a learning  curve &  is  more  costly  but  the outcome  is  a  wonderful, full  healthy life....

Welcome  aboard

 

mamaw

Thank you for the welcome! 

I do not know what test I had. All I know is they did one vial for the test. Then the place they sent it to called me and asked If I could come in and give more blood. So I did, They took 3 vials said they only needed two but it was a very complicated test so they took one more for good measure. They said what they were for, but it all sounded like German to me! I guess I should of had her write it down. I aslo wish I knew how long the labs took before I got an answer. Ohhh well patience is a virtue !! I have also started buying as much Organic as possible!! It is hard to buy everything Organic, but I have been doing the best I can. SO far :) I am looking forward to that "Full Healthy Life" :) 

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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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