QLisa

I was diagnosed with Celiac in June at age 33. (Positive Biopsy and blood test) My vitamin D levels were low despite supplementation (have been taking 2000 iu for years as part of my multi) so my doctor ordered a bone density scan. Since I’m pre-menopausal, my results include BMD and Z-scores only. No t-scores at my age. My doctor didn’t...

I appreciate you sharing. The GI that diagnosed me with celiac only tested my vitamin D levels (low) and told me to follow up with my primary care doctor for a bone density scan. When I see her I’ll request labs checking for more vitamin/mineral deficiencies.

My symptoms also seemed tolerable to me, as id been living with them for years and thought that was just my “normal.” I wasn’t even looking for a celiac diagnosis, more like stumbled across one. But Celiac disease carries with it the possibility of a many serious complications. So while it seemed crazy to my family to take on the cost and inconvenience of ov...

Were you given an explanation for why your numbers were still over 80 after being gluten free for a few years? What were the additional changes you made that got you down to the 40s? I was diagnosed backwards, positive biopsy followed by blood work. I just got the blood work today and it’s greater than 100 ttg with normal range being less than 4...

I appreciate you sharing this! Since the scope didn’t show anything abnormal with my esophagus, my team of doctors (primary, ENT, and GI) have basically washed their hands of investigating the swallowing issue further. It’s happening a lot less often than it used to, so maybe it was celiac all along somehow. A mystery I guess I have to be content to live wit...

He hasn’t been tested for celiac as he’s never displayed symptoms and until the last couple of weeks he had no family history. (I am the first diagnosed celiac in my family, including extended out to cousins, aunts/uncles, grandparents). His FPIES was a pretty standard case and wheat was one of the first foods he could have that did not trigger a response.

Hello! I’m so sorry your likely on the FPIES journey. My son with FPIES is 12 and finding knowledgable doctors 12 years ago was next to impossible. There wasn’t even a diagnostic code yet. There are two types of FPIES, chronic (which some now diagnose as FPIAP) and acute. My son was a textbook acute case. It started with oat and rice cereal. Tw...

Thanks for your reply. I continued eating gluten in the two weeks waiting for biopsy results, probably overdid it trying to eat a variety of things for “the last time.” I got my blood drawn the next day and immediately following went gluten free. So today is day 3. Not a big change here at home, but I know socially it is going to be very challenging. ...

I’m 33 and was just diagnosed with Celiac disease out of the blue. I was seeing an ENT for some reflux/swallowing issues. She ordered a swallow study and it showed food sticking in my esophagus, but not my throat. She said “that’s not my area” and referred me to a GI. The GI’s office called and said, you can wait until September for an appointme...