tunibell

I'm not sure what my TTG IgA was at diagnosis (the doctor who diagnosed me via blood/biopsy used a different testing scale than my current celiac specialist). My level at 6 mo gluten-free was 41, and at 12 mo was 27 (with <20 as normal). I have been extremely strict as well (never eat out, minimal processed food, etc.)

I think you and your daughter are doing a great job! I've been meticulously gluten-free for one year now, and my TTG IgA is steadily declining but still positive (28 at my last visit). All my other tests (IGG, DGP) were negative. I just think it takes more time in some folks.

I'm not sure how long I have had celiac disease; if I had it prior to February 2009, it was completely silent. CT scan came back normal, thank God!

I seriously don't see how there could be any gluten in what I eat. I'm meticulous to the point of paranoia. As far as medicines, all I ever get is "we don't actively put any gluten in but we can't guarantee that the raw materials are gluten-free." I never eat out, and I replaced half my kitchen after diagnosis. I only use gluten-free shampoo and conditioner...

I just got my repeat endoscopy results back. After 8 months on the diet, my biopsy revealed "partial healing." My doctor seems to think the celiac should have totally reversed at this point, and now wants to send me for a CAT Scan to rule out lymphoma. I am, naturally, freaking out. Anyone go through something similar???

I was diagnosed with celiac disease in 5/09 after being symptomatic for a mere 3 months. At the time, my endoscopy/biopsy showed mild gastritis, duodenitis, scalloped intestinal folds, and mildly blunted villi. I have been meticulously gluten-free ever since. It took about 4 months for me to feel all better. At around the 6-month mark, I started to get...

I think most docs have this one all wrong...tTG seems to take time to fall to normal levels in lots of people, despite the gluten-free diet. I recently read an article in the Digestive and Liver Disease Journal, which followed biopsy-diagnosed celiacs in the first year of recovery; at the end of the year, most of the subjects still had elevated tTG IGA levels...

I think it might just be part of the healing process. I had a lot of issues with painful gas in the first 5 months or so. I haven't made any major changes in the last few months; I think these things just take time.

You might want to ask your doctor about testing for microscopic colitis. It's another autoimmune disease that can often occur in tandem with celiac disease. It requires a colonoscopy to diagnose (fun, I know), but it is very treatable.

It took two weeks before I felt ANY better, and more than two months before I felt significantly better.

I actually just read a study that showed that 61% of folks with diagnosed celiac disease on a gluten-free diet still had positive TTG IgA readings after one year. This number included both people who were extremely strict and those who were only mostly compliant. Let me know if you'd like me to send you the study; I know it made me feel a lot better!

Personally, I can have the exact same meal and get gas/bloating at least part of the time. I think it depends on a lot of factors (time of day, speed of ingestion, etc.)

There should be a scale associated with your TTG numbers. Different labs use different ranges, so the numbers in and of themselves are impossible to evaluate without the range.

I was diagnosed (via endoscopy/biopsy) in May 2009, and I can honestly say it took a full two weeks before I felt any better, and two months before I felt much better. I had the same sensation, by the way - it felt like someone was clenching my stomach in their fist. This was the symptom that drove me to the doctors (all five of them) in the first place....

They are dropping...just not as quickly as I (or my doctors) would like.