Neg celiac test, close family history, next steps?

[heidiheidiho]

Hello! 38 year old woman and postpartum. My father, sister, and two paternal aunts have all been diagnosed with celiac. My father also has Dermatitis herpetiformis since age 18. I've had several negative blood tests, but I'm not sure I was eating the recommended amount of wheat beforehand. I usually get the tests after I start wondering if I have celiac, and I think unconsciously cut down on the amount of wheat I'm eating.

Medical history: mitral valve prolapse, positive ANA with undetermined diagnosis, rosacea since childhood. Low B12, iron, and Vitamin D most of my life (also was vegetarian 25 years, just started eating meat last year).

Physical symptoms: sensitive stomach, osteoarthritis, carpal tunnel, hypermobility, sacroillitis, joint pain, headaches, dizziness, and my feet/hands go numb easily. No diabetes, normal insulin levels. I am overweight by BMI and find it difficult to lose weight, despite eating fairly healthy and being active. This has been life long.

My sister was diagnosed with celiac today by blood test after weight loss, headaches, digestive issues, and mouth ulcers.

Here's my question - I've been eating gluten free about a week because my primary care doctor wanted to see if a lower inflammatory (gluten free included) diet helped with my joint pain. Should I get another blood test and do a gluten challenge beforehand? Should I get a genetic test? Should I see a gastroenterologist? Or should I just stay gluten free for a longer period of time and see what happens?

[trents]

You could also have NCGS (Non Celiac Gluten Sensitivity) which does not damage the villi of the small bowel and therefore will result in negative antibody tests and a negative biopsy. They share many of the same symptoms and the antidote is the same: total lifelong avoidance of gluten.

You may also have an atypical immune system response. And if your total IGA is low it will push the individual IGA tests down toward the negative range, e.g. the tTG-IGA test.

If I were you, I would seek an endoscopy/biopsy since your IGA antibody tests have been negative but you have the family history and many celiac-like symptoms.

[Scott Adams]

Or you could just go gluten-free for a while and see if you get symptom relief. Given your family history and symptoms it seems like a reasonable bet that, at the least, you may have NCGS. If you do the biopsy be sure to eat at least 2 slices of wheat bread daily for at least two weeks beforehand.