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Waiting on camera test

mariamccl
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mariamccl Newbie
mariamccl
Posted

Hi all, 

I'm a 25 year old female. My mum and uncle both have celiac disease. I have suspected celiac disease but blood test came back negative. I was on the waiting list to see a gastroenterologist but it was 73 weeks waiting so I've decided to pay to get a camera done which is happening next month - I can't wait to get some answers. I feel like I'm going crazy and just want some reassurance. My symptoms are constipation and diarrhea - nothing in between. Headaches almost every day that have progressed to migraines now. I start feeling extreme fatigue at around 4-5pm every day along with dizziness, muscles weakness, shaking, heart racing. My mental health has declined and I just feel like I'm losing my mind. I'm at the point now that I want a diagnosis so I can at least feel better even if it is life changing. Today I've started to feel what I can only explain as a lump in my throat like I haven't fully swallowed something. It's quite painful especially when I eat. It goes away and then comes back. Feels like my symptoms are getting worse and worse and I just want to feel like myself again. I hope some people can relate to these experiences - I feel like up until I paid to go privately no one has listened to me or taken me seriously.

 

Thanks x

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trents Grand Master
trents
Posted

Welcome to the forum, @mariamccl!

It is outrageous that you have to wait so long for a GI appointment! I assume you are in the UK from your use of "mum" for your mother. That is par for the course I understand in the current UK medical system.

I am glad you went private concerning the camera. Will this also include a biopsy of the small bowel lining?

Scott Adams Grand Master
Scott Adams
Posted

Were you eating lots of gluten in the 6-8 weeks before your blood test? If not, you can end up with false negative results. Feel free to share your blood test results--were your antibody levels elevated at all?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. If your biopsy ends up negative you still may want to go gluten-free for a few months to see if your symptoms go away.

Also, be sure to eat tons of gluten daily in the 2 weeks leading up to your endoscopy, otherwise you could get false negative results. 

 

 

 

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      Welcome to the forum, your symptoms are certainly consistent with possible celiac disease. Were you eating lots of gluten daily in the 6-8 weeks before the test? If not it could lead to false negative results. When you post your results please also include the reference ranges, as each lab uses their own. Good luck!
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