Welcome back! It sounds like you’ve been navigating a lot, but it’s encouraging to hear that your last IVIg cycle brought some improvement in vision and ataxia—fingers crossed that continued treatment helps even more over time. The phlebitis must be frustrating, though; hopefully, your care team can find a solution (maybe a different IV site, slower infusion rate, or even a port if needed). On the gluten front, I hear your discouragement about eating out. Even tiny exposures can keep antibody levels elevated, especially with celiac or severe gluten sensitivity. It might be worth trying a strict "home-only" phase for a few months to see if your AGA IgA drops further—then you’ll know for...

Welcome to the forum, @Nattific! First, let's deal with terminology which can be very confusing because there is a great deal of inconsistency in how the terms associated with gluten disorders are used by lay people and even in the medical/scientific literature as well. Having said that, it is probably more accurate to use the term "gluten intolerance" as a general term referring to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). The term "gluten sensitive", therefore, is probably best used to refer to NCGS. Celiac disease is not an allergy. It is an autoimmune disorder whereby the consumption of gluten causes an immune system response in the lining of the...

It sounds like you’ve been through an incredibly difficult journey with your health, and it’s understandable to want clarity about whether you have celiac disease. While your doctor hasn’t officially diagnosed you with celiac (due to avoiding the gluten challenge), her decision to label it as a "severe gluten allergy" in your chart strongly suggests she believes gluten is causing systemic harm—consistent with celiac. Your family history, symptom improvement on a gluten-free diet, and current lab results (elevated lipase, liver enzymes, nutrient deficiencies) all point in that direction. Many doctors prioritize patient well-being over diagnostic formalities when reintroducing gluten could be...

I'm sorry I have been inactive here for awhile - a lot going on! I started IVIg in Oct 2024 and because of a blip with insurance, I have only had seven cycles (interrupted with two months off). I tolerated the medication well (Octagam), but didn't see much improvement until the last cycle. My vision and ataxia symptoms were noticeably better afterwards. The plan is to continue monthly for 6-12 months to see if it helps over time. Unfortunately, I have had phlebitis in my veins after the treatment the past two times, so we are trying to figure out how I can continue to receive the infusions. I am also working hard to be more strict with my gluten-free diet. As I mentioned in my...