Newly diagnosed with non celiac gluten sensitivity

[Bridget connors]

Hi my name is Bridget I was newly diagnosed with non celiac gluten sensitivity but I have a very severe reaction to gluten and was wondering if anyone else has this and was told they didn’t have celiac. My brother and his son have it and I think I do as well. I have horrible burning lips that started three years ago that turned into cracks sometimes in the corners of my lips and my lips swell and turn bright red all around the edge and burn and tingle. Then I started get sores on my tongue and inside of my lips. When there’s a bad flare of if I eat any sugar or citrus it’s like I’m burning my mouth and more sores appear. I had chronic diarrhea to the point of incontience sometimes and stomach pains nausea. Migraines then came horrible leg and hand feet cramping. Then joint pain. Sleeping problems vomiting and more recently very foul smelling gas. So I stopped eating all gluten and every symptom has gone away. If I accidentally eat gluten it comes back with a vengeance and more symptoms appear each time!!! It’s crazy it’s like the gluten is poisoning my body. This last exposer my ear was killing me and the lymph node behind my ear and my throat and a big canker on the side of my tongue. Anybody with any thoughts?? I’ve had biopsies and blood tests everything comes back normal I don’t get it. 

[trents]

Welcome to the forum @Bridget connors!

When you had the blood antibody testing done and the biopsy, had you already been restricting your gluten intake for a significant period of time, say weeks or months at least?

Edited April 17, 2025 by trents

[Bridget connors]

I can’t remember if I had started the gluten free diet or not. 

[trents]

Testing for celiac disease, whether blood antibody testing or biopsy procedure, will likely be invalidated when the gluten consumption has been discontinued ahead of the testing or the procedure for more than a couple of weeks or so. For the person with celiac disease, the consumption of gluten results in the production of specific antibodies that can be detected in the blood because the immune system is attacking the gluten as it comes in contact with the small bowel lining. The blood testing is designed to detect these antibodies. Over time, the inflammation wears down the villi that line the small bowel. The biopsy is designed to spot this damage to the lining. When gluten consumption is discontinued, these processes cease. Antibodies begin to disappear from the blood and the villi begins to rebuild. Many people begin to experiment with the gluten free diet before they seek testing and their doctors often neglect to check for this before ordering blood tests and biopsies. 

If you want to be sure that you don't have celiac disease, you would need to endure a "gluten challenge" for a period of weeks. This would consist of resuming gluten consumption in the amount of at least 10g daily (the equivalent of about 4-6 slices of wheat bread) for at least two weeks and then get retested or re-biopsied. But regardless of whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity) the antidote is the same: total abstinence from gluten for life.