Waiting on camera test

[mariamccl]

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

[trents]

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]

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.