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    Do you have questions about celiac disease or the gluten-free diet?

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Hi everyone,

I had a blood test for Coeliacs disease a week ago and im just waiting for the results now, should be another week i think, im just really worried that it will come back negative even if im not? Ive been reading a lot about blood tests that come back as a false negative even if the person really has the condition, what happens then? My doctor just said 'if it comes back negative we can do an ultra sound scan to see if its something else' but people have had coeliacs disease for years and been misdiagnosed - im just worried has anyone else felt like me?

The other thing i wanted to ask is does anyone have the stomach pains come and go? I was getting stomach pains all the time and now not as much, the bloating is still there though, that never seems to go. Its my sisters wedding next week and the bridesmaid dress she ordered 4 months ago didnt fit because of my bloated stomach, im fed up with it now. My mum has IBS although she hasnt been officially diagnosed with tests and since ive been ill and having tests she thinks she could be a mis diagnosed Coeliac too. I guess the only way to really know is to cut out Gluten completely, this worries me about having Coeliacs though becasue i am a keen cook and i am writing a recipe book that i am hoping to have published and if i cant eat gluten i cant make the recipes i have invented or eat the foods i love, it s so upsetting, part of me wants to have it so i know whats wrong with me and part of me doesnt want to have it because of all the work and suffering involved in watching everything you eat.

I wasnt planning on ranting on about this, i dont know anyone with Coeliacs and i just have so many questions xx

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Your right to be concerned that the results might be a false negative, that delayed my diagnosis for years. You should give the diet a good try for at least a couple of months no matter what the blood test results are. Perhaps you and your Mom could do it together and support each other a bit in the process. Don't give up your ideas about your cooking or your book, if you do have a good result on the diet it is not all that hard to convert many recipes to gluten free and we can always use a good gluten-free cook book. It can take a bit of getting used to at first but the rewards health wise are sooo very worth it. You have found a great place for support and info, and a good place to vent. I hope your feeling better soon.

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Thank you so much for replying to me i just dont know who to talk to.

The doctor gave me Fybogel (im not sure you have it in the US) but its a stool bulker that forces your intestines to pass stools more regularly but all it does it make me even more bloated, the stomach pain i have in the morning goes around to my back by the end of the day into my kidneys and i have a desperate urge to go to the toilet but only a small amount of urine passes. Ive had urine tests and they are fine, i just hate being ill, i want it to go and im worried that ill never know what it is, its the bloating that worries me more than anything else, although im a US size 12 - 14 ive always been very proud of my flat stomach it makes me feel young and sexy and now that i look 6 months pregnant im just getting so depressed, my fiance tells me i look lovely but i know i dont, my clothes dont fit and i feel sluggish and permanently full. i dont know what ill do if the test comes back negative, my doctor is great though and said he wont stop until im better - i almost cried, finding a great doctor is so difficult in the UK, we have to go to our local doctor surgery and have who we are given and if they are rubbish there isnt much you can do about it!

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Thank you so much for replying to me i just dont know who to talk to.

The doctor gave me Fybogel (im not sure you have it in the US) but its a stool bulker that forces your intestines to pass stools more regularly but all it does it make me even more bloated, the stomach pain i have in the morning goes around to my back by the end of the day into my kidneys and i have a desperate urge to go to the toilet but only a small amount of urine passes. Ive had urine tests and they are fine, i just hate being ill, i want it to go and im worried that ill never know what it is, its the bloating that worries me more than anything else, although im a US size 12 - 14 ive always been very proud of my flat stomach it makes me feel young and sexy and now that i look 6 months pregnant im just getting so depressed, my fiance tells me i look lovely but i know i dont, my clothes dont fit and i feel sluggish and permanently full. i dont know what ill do if the test comes back negative, my doctor is great though and said he wont stop until im better - i almost cried, finding a great doctor is so difficult in the UK, we have to go to our local doctor surgery and have who we are given and if they are rubbish there isnt much you can do about it!

What you do is go gluten free. Unless you plan on having an endo you can do it now. Your body will tell you if it is what it needs. I had that awful bloat also. And incredible pain GI wise especially towards the end. I was amazed that I went from a size 14 to a 4 in less than a month. It was all bloat and edema (my kidneys were effected). I am 51 and wear the same size now I did as a teen. Of course gravity has made things fit a bit different and I sure wouldn't wear a bikini but I can't complain. LOL

You have nothing to lose by trying the diet and everything to gain.

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