1. Community
  2. Gut, bowel and stomach
  3. Coeliac Disease

Advice please?

Posted , 4 users are following.

dan38255
dan38255

So for a while now I’ve been having this “periods” of illness, I’m talking extreme fatigue/lethargy, headaches, nausea, etc. It comes on suddenly and lasts for around a week. I’ve had blood tests for all things such as deficiency, thyroid etc and all have come back fine. 

Yesterday I ate a foot long subway sandwich, and within 2 hours I was asleep and woke up feeling like this AGAIN. I don’t have diahorrea but I am gassy and it doesn’t smell great (gross I know). Do you guys think this could be linked to gluten? 

0 likes, 5 replies

5 Replies

  • jasmine19000
    jasmine19000 dan38255

    Posted

    Definitely sounds like you should have it looked into. I can relate to what you're describing. 

    I had a blood test done for coeliac but it came back negative. Everyone I've seen on here, as well as in person, including my current gastrointestinal specialist said the blood test is highly unreliable (you'd think they'd share this with GP's!) so I'd recommend trying to find a gastrointestinal specialist who won't beat around the bush, and send you for an endoscopy (camera down the throat - takes about 5 mins apparently and they take a small biopsy to test for damage caused by gluten). You do need to be eating around 6 serves of gluten every day for 6 weeks before being tested (if you haven't been, they'll book you in six weeks and you start eating gluten from then until the procedure date). If you don't eat gluten it will be really difficult for them to find the accurate results. 

    I've been battling symptoms for many years until someone pointed out it sounded like coeliac disease. I've also been through a whole rigmarole with GP's who think I'm an idiot and that the blood test was enough. 

    When I recently saw the specialist, he was extremely supportive and feels that despite what the doctors have said, it definitely sounds like coeliac and should be investigated. 

    So just something to be mindful of - it's not always easy getting a diagnosis. 

    You will go through a bit of a tough time in those 6 weeks, but hang in there. You're definitely not alone in suffering such frustrating, and at times debilitating, symptoms. 

    I really hope you find an answer so you can feel better soon! 

    Best wishes

    Jasmine

  • janjcks
    janjcks dan38255

    Posted

    I am sorry I can't help there but I also feel like you had all the blood tests and such all came back normal . Doc wouldn't send me for anything else as he said I am not coeliac 😳 but I still am so tired all the time and often feel sick so I am being sent to a sleep clinic to see if I have sleep apnea I hope you get it sorted out tho x

  • dan38255
    dan38255

    Posted

    Thanks for the replies. Do you think my symptoms sound like gluten problems? Because it may not be celiac but NCGS sounds more like it? 
    • rohitrohit1
      rohitrohit1 dan38255

      Posted

      Same problems with me and my mother.

      We both have negative blood test result. my mother's endoscopy biopsy is also normal.

      Now i think it might be related to mast cell disorder.

  • janjcks
    janjcks dan38255

    Posted

    Hi Dan , it could be , maybe discuss it with your Doc
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.