I’m not sure about diagnosis of NCGS. Is there anything else I should be checked for?

[Emma84]

Basically, I have done food diaries and from what time could tell, since elementary school, gluten has caused my to have gas, abdominal pain, and diarrhea.
 

the incident that brought me to get tested for celiac was when I have severe abdominal cramps to the point I couldn’t even stand up or walk, paired with several rounds of diarrhea. The amount of gluten consumed in that meal would have been very, very trace amounts (a sauce that I dipped 1 peice of food into had some worceshsire sauce in it which is not totally gluten free but mostly is). Friends were very concerned and told me to get tested for celiac. Everyone else ate the same food and did not get sick.

 

did the blood test, only IgG demiated gliadin came back elevated. Proceeded with biopsy. Biopsy was normal, but they found some inflammation in my stomach. 
 

they diagnosed me with IBS and gluten intolerance. But typical IBS foods (artificial sweetners, carbonation, high FODMAPS food) do not bother me, and that reaction I describe above seems way too intense for just an intolerance considering there were only cross contamination levels of gluten in that food. Also, gastritis symptoms don’t match my symptoms at all? So I’m not convinced that just some stomach inflammation is causing all of this. 
 

what are my next steps here? When I eat gluten free, my bowel movements are normal aside from the times I get really sick (always from someone else making my food, always seems to be some level of gluten in that food). Incidents like I described above have happened my whole life, and happen about 3 times a year. I do not have any vitamin deficiencies or wonky blood work in general aside from that one elevated antibody and some wacky hormone levels (do not have pcos, they checked for that, no cysts either). They have tested my thyroid like 5 times and it’s always normal. 
 

should I push for more testing? If so, what testing? Is it at all possible that the biopsy was done incorrectly or missed any sign of inflammation or damage? I find it odd that they didn’t even find inflammation. 

Other symptoms I have that may or may not be related: wacky hormone levels, brain fog, very extreme fatigue (sleeping like 10 hours and still being tired, not being able to keep up with others my age despite being in the same physical shape etc.), and frequent and urgent urination and problems emptying my bladder (saw a doctor about this, said this was VERY unusual at my age (24, never given birth) but didn’t do testing or explain just offered meds for it) 

any help at all in highly appreciated. I have a 15 min follow up on Friday and I want to be prepared.

[Tall Holly]

Have you had an endoscopy? My bloodwork for celiac is negative, but I have increased leukocytes in my duodenum. This landed me a diagnosed of NCGS by Mayo Clinic. However, they also believe I have post-infectious IBS after a terrible round with Covid in January. The pain from the IBS flare ups is absolutely unreal. I sweat and almost pass out. 

I admittedly thought NCGS was imaginary until all of this happened. But it is so very real and can be just as severe as celiac disease. I have endometriosis, PCOS, had a hysterectomy, migraines, joint pain, you name it. 

I would push for an endoscopy just to see if you are having any damage like the increased IEL's. My doctor said it really needs to be taken just as serious as celiac disease, no cheating with any gluten ever, etc. 

[Emma84]

1 hour ago, Tall Holly said:

Have you had an endoscopy? My bloodwork for celiac is negative, but I have increased leukocytes in my duodenum. This landed me a diagnosed of NCGS by Mayo Clinic. However, they also believe I have post-infectious IBS after a terrible round with Covid in January. The pain from the IBS flare ups is absolutely unreal. I sweat and almost pass out. 

I admittedly thought NCGS was imaginary until all of this happened. But it is so very real and can be just as severe as celiac disease. I have endometriosis, PCOS, had a hysterectomy, migraines, joint pain, you name it. 

I would push for an endoscopy just to see if you are having any damage like the increased IEL's. My doctor said it really needs to be taken just as serious as celiac disease, no cheating with any gluten ever, etc. 

would I have a severe reaction from such a small amount of gluten with NCGS?

 

they did the endoscopy which is how they got the biopsy. They didn’t mention IELs just that my villi were normal. I’m not entirely sure what the biopsy testing entailed, seems like they looked at the villi mainly.