Hi! I'm new to these forums (though I've lurked the last couple years), and I'm hoping you might have some advice, insight, or experiences to share with me.
My husband was "diagnosed" with celiac disease in late 2009. His blood tests were ordered by our family practitioner and they came back positive. We were referred to a local GI doc. The GI told my husband that it was fine to continue the gluten-free diet prior to the endoscopy (we now know that is not the case). The doc also took only 1 or 2 samples of the small intestine. The endoscopy came back negative. Our family practitioner told us she was certain my husband had it, and she was willing to refer us to a GI doctor in a local large city, but since we already had a $1000 bill from a procedure that was done incorrectly, and it was obvious the gluten-free diet was working, we declined.
Since then, my husband has maintained a strict gluten-free diet with no "cheating." He recently began having some neurological symptoms, mostly intermittent numbness/tingling in his arms and numbness and pain in his legs (especially the left). We've found a new GI and we're also seeing a neurologist.
Thus far, the neurologist had ordered a brain/spine MRI, which came back negative. Blood levels of B12 are normal (though he does have low Vitamin D levels). The neuro is scheduling him for an EMG. He wanted to know if our new GI was going to confirm the celiac diagnosis, because celiac can be a cause of nerve damage. We had discussed the possibility with our GI. He ran a celiac panel, which came back negative, as was expected since my husband consumes no gluten whatsoever. If he was to do an endoscopy, he'd have to do a gluten challenge, and I have reservations. Nerve damage is nerve damage---the gluten-free diet isn't solving the numbness issues, so do we really need a diagnosis in terms of how we'll treat the nerve problems? My husband will get really sick---I don't know if it's worth affecting his job performance (he's at a new job and there's no paid time off for him, plus he's in the running to move up pretty quickly), let alone the fact that we have three small children...I'm just wondering if having that official diagnosis is worth the path to get there, considering it doesn't really change anything that we'll be doing.
Anyway, it feels like we're hanging in limbo with no answers and it's frustrating. We're trying to figure out what's causing these nerve issues but we have no answers thus far. Also, if somehow it is celiac-related, obviously my husband is following his diet, so it doesn't look like there's much promise of the diet fixing the nerve issues.
If you have any experience, please share! I don't even know how to continue this post because that's how up-in-the-air we are right now.