Coeliac symptoms but negative blood tests

[Corina32]

Hi everyone! I was thinking a lot before I found the courage to write this but I got to the point where I don’t know what else to do.

Few years ago I started having troubles with the sinuses and then post nasal drip. Three years ago I started having globus sensation and after GERD. I was referred for an endoscopy as my father died of throat cancer to rule out something sinister however with the waiting times and than covid I was only seen last month. From the moment I was referred until I was seen I started having many other symptoms (bloating, nausea, brain fog, heartburn, sometimes chest pains, loose stools, tiredness, cold feet and hands, numbness of arms and legs and recently sharp pain in the left quadrant) but no biopsies were taken and they said everything is normal. The Gp and GI doctor insists that when I feel sick I am having panic attacks (I was medicated for depression in the past but it’s nothing like a panic attack now). I went privately and I tested for celiac but the blood tests came back negative.

I honestly don know what else to do. I feel so sick and the brain fog really kills me. I stopped driving as I do not feel safe to drive, I am just sick and exhausted all the time. 
Anyone had a similar story? 

[trents]

Welcome to the forum, Corina!

It is unfortunate that a biopsy was not taken during your endoscopy. The damage to the small intestine lining is not always visible until looked at under a microscope. That's why they take biopsies  and send the samples to a lab.

Usually, before a endoscopy/biopsy is done there is antibody testing performed via a blood draw. When gluten is ingested by someone with celiac disease, inflammation and antibodies are produced as a response to the gluten being misinterpreted by the immune system as an invader. These antibodies can be detected and measured in the blood. This noninvasive diagnostic step is usually done before an endoscopy/biopsy. The endoscopy/biopsy is sometimes done after that, particularly if the antibody test results are equivocal or if the doctor wishes confirmation when the antibody tests are strongly positive. 

All this to say that I am suggesting you pursue a celiac antibody panel as the next step. Many physicians will only order the tTG-IGA test but push for a full antibody panel: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/. 

It is important that you consume a significant amount of gluten daily (the equivalent of two slices of wheat bread) for 6-8 weeks before the antibody test. Many make the mistake of beginning the gluten free diet before testing.

If the physician is unwilling to order an antibody test then either change doctors or order a home test kit for about $100: https://www.imaware.health/at-home-blood-test/celiac-disease-screening

Have you had your iron levels, B12 and thyroid enzymes checked? Deficiencies in these can cause cold intolerance and fatigue.

Edited October 22, 2021 by trents