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

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?

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. 

I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea." CBC = Complete Blood Count. This is the typical bloodwork most people would have done routinely with an annual wellness checkup. I would include things like iron levels, various blood cell counts including reds and whites and other infection fighters. CMP = Complete Metabolic Panel. This would measure things like blood sugar, kidney and liver function, plasma proteins and various enzymes. Non cellular things that the body produces. Also typical of an annual wellness check. Have you tried cutting out dairy and oats? These two are the most common cross reactors in the celiac community. I know it must be tough trying to get adequate calories and nutrition when you are pregnant while at the same time eliminating foods that are good sources of those things.

They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging.