No To Celiac

[queenofhearts]

When I was debating about being tested or not, my biggest fear was that if I didn't do it no one would believe me or take it seriously that I needed to follow the diet. But happily this wasn't the case at all, they were all just thrilled I finally found a way to feel good again. Everyone has been really supportive, even without an "official" diagnosis. Those that love you should support whatever decision you make, and once your health starts improving, like nini says- then they can't really doubt the dx.

I think a lot of this depends on how visibly sick you were before diagnosis. I had symptoms but didn't talk much about them, so even WITH the diagnosis it's a little hard to convince my household that I must avoid even a speck of gluten. If I hadn't had the biopsy I'm sure it would be much harder to solicit their cooperation. I know my husband & sons don't wish me ill, but they are not very meticulous by nature, & none of them appreciate my "pickiness" in the kitchen. I think if you are living alone, or with others who are gluten free, it would be much easier, but if you need the daily cooperation of your household, you may need some reinforcement.

Leah

[Deb O (UK)]

just been to the hospital for my appoitment with the doc, really gutted!!! he said my celiac test was negative. im dumbfounded! he said theat i had 2 tests and the first was the iga was raised but the ttg test for celiac was negetive below 10. he said that cos ive had a posotive feedback from the gluten-free diet he wants to double make sure and do the endoscopy, in order for the test to be correct i have to go back on gluten for 8 weeks!!! ive said ide do the test and go back on gluten but im scared, really scared, not of the D or the C or the cramps and bloating but the thrush is just so hard to bare, before i went gluten-free i had thrush constantly i would have it one weeks go the noext and on and on and then the times when i would get it 4 weeks staight, its just so bloody painfull, there was days when i couldnt walk or even get out of bed, the thought of going back to that is makeing me really upset im crying as i type. i got to do it i know but finding it hard to cope. the other thing is as well as wehen i was leaveing the doctors assistant said she thought it was IBS i was diagnosed with that 10 years ao, then she said that even if the reults come back negetive from the biopsy i may still have wheat intolerance which would explain the improvement on the gluten-free diet. oh and the doc said that the results couldnt be a fslse negetive a they are 90% accurate and only a moderate of people evaide the test but just incase i was one of those he was gonna do the endoscopy. sorry im not makeing much sense im just blown away. im really ariad at the moment.

Oh Taz, reading this I just want to offer you a big hug. It sounds really daunting. Is it crucial to you to have a diagnosis on paper? If not, I'm thinking that it might not be worth being put through all of that. You obviously have problems with gluten and are much better being gluten-free. I know it's easy for me to say and difficult to do, but I think you could try to put to one side what the doc has said for a couple of days and see how you feel then after you've had time to 'sleep on it' and reflect upon what you want to do for yourself.

Big hugs to you, keep us posted. Remember that there's lots of people out here who understand what you're going through and who will offer you support. Take care, Deb