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Celiac Tests Negative.


heathenly

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heathenly Apprentice

Guess I'll just keep on not eating gluten and feeling better!


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GottaSki Mentor

Guess I'll just keep on not eating gluten and feeling better!

Great plan :)

FruitEnthusiast Enthusiast

My blood test was negative too, but I'll be gluten free for life anyway. I think that's pretty common. I can't touch the stuff.

KMMO320 Contributor

Mine was negative too and I was told I am gluten intolerant but without a firm diagnosis, I have been just eating whatever and getting sick, telling myself its something else and not gluten...i know I am fooling myself. I feel sick and I really don't know why I'm doing it. I wish I could just be motivated enough and just do what I need to do already :(

heathenly Apprentice

I have to keep in mind how miserable I was eating gluten. It was so not worth it. I also don't want to test the theory that gluten intolerance is "pre-Celiac"-- don't want to have full-blown Celiac down the road.

KMM, I think it really helped me to get rid of everything with gluten in my house. No temptation to eat anything with gluten. Also, it helped me to tell all my friends and family-- they're very vigilant on my behalf. If they see me eating something that looks like it has gluten, they jump in. I'm never eating gluten, but I'm glad that they're aware. If I ever did intentionally eat gluten, I'd have some 'splaining to do.

KMMO320 Contributor

Good advice! I had gone gluten-free for 3 weeks after I had all my testing but before I got my actual results. I never felt better in my life! But when the dr said Nope, not celiac and she basically didnt believe in Intolerance...I started just eating whatever. I went to a new Dr and they said it was likely intolerance..but it wasnt enough to make me stick with it. I had a bad day yesterday. I felt awful. So today I was very good and so far I feel really good.

heathenly Apprentice

My doctor at least believes in gluten sensitivity, so he told me not to eat gluten if I do better off of it. Truthfully, even if he thought sensitivity/intolerance was bunk, I wouldn't care. I wouldn't eat gluten again if someone paid me.


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Stephanie Young Newbie

Mine was negative too and I was told I am gluten intolerant but without a firm diagnosis, I have been just eating whatever and getting sick, telling myself its something else and not gluten...i know I am fooling myself. I feel sick and I really don't know why I'm doing it. I wish I could just be motivated enough and just do what I need to do already :(

That's what i'm kind of going through too.. My symptoms have been getting progressively worse since I first started noticing them, and my tests are tomorrow! When I first went to the doctors with this, about 6 years ago now.. they tested for diabetes, thyroid and probably other stuff but the only thing odd was my low vitamin D levels. I just ended up becomming a very picky eater after that, and my weight dropped pretty fast because I just couldn't eat a lot of foods. I was 18/19 and not really interested in going back to the doctors. So I started my own trials and noticed that even after one gluten free meal, i felt SO different.

For the last year now, i've been eating a lot better, but i still go for gluten almost everyday and deal with it, but i'm far more worried now about intentisinal damage and, positive diagnosis or not - i'll probably be gluten free for good!

FruitEnthusiast Enthusiast

Wow. It's surprising to hear that some Docs are saying Gluten Intolerance isn't a big deal or doesn't exist. My blood test was negative too and I still have intestinal damage from gluten to the point that I've developed so many other food sensitivities from it that there are very few things left I can eat. Don't let that happen to you. Look up info on leaky gut. You could eventually be very sick and wishing you'd stopped eating gluten sooner. It can take one to two years to recover once the damage is done. Do some research before you over do it and end up where lots of us are now. It's not all about "Celiac" or not. Gluten is what does the damage... be careful :)

GFinDC Veteran

We had a rather lively discussion about cheating not long ago, and whether or not it really is something we need to worry about. See the cheating thread for others input. Another thing to think about is reading the signature lines of other members and seeing what issues they developed, many after years of misdiagnosis.

Well, don't get me wrong, not trying to beat anybody up about their diet choices. I know it takes some time to wrap your head around these diet changes, or at least it did for me. It really is a process going gluten-free, and over time your body gets better and your mind adjusts too. I think of it as changing a habit. Food is probably one of the strongest habits people have, They learn to eat certain foods from a young age and are trained to think they are safe.. And then whammo, suddenly it's not true anymore because of celiac disease. But habits can be changed, and new habits learned. You all can do this! It may be be tough at first but it is for many people. And you don't have to be perfect right away, if you make a mistake you are just a human being like the rest of us who made mistakes. So just start right back in. One day becomes 2 days becomes 3 becomes a week. And then it is several weeks and a month and then more months and you are really a gluten-free person! So easy once it is over. It's not a bad deal once you get used to eating different. I gotta put a smiley here. Big one too. :D

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

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      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
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