In March I realized (thanks to this forum) that my celiac testing was misinterpreted and actually seemed conclusively positive. My doctor would not provide an official diagnosis even though I presented the evidence I had found (again, thanks to this forum). Instead of taking the time to consider the studies I provided, she said I should see Dr. Fasano or Dr. Green. I went ahead and made an appointment with Dr. Fasano, and it's scheduled for Tuesday. However, now that I've waited almost 6 months to see him, I'm not sure what to expect or how to prepare besides bringing in copies of my records. Could really use some advice, because I feel a bit emotional contemplating what he might say.
I've been on a strict gluten-free diet since March and overall have been doing quite well, but I'm still very much experiencing the ups and downs of finding my body's new equilibrium. In fact, just about 2 months ago, I began to experience some circulatory issues (episodes of *freezing* and chills, when I've always been the runs-warm/perspiring type), and I was diagnosed with Raynaud's this past month. It was a bit scary to be diagnosed with that AFTER going gluten-free, and I just saw a rheumatologist who is trying to rule out other connective tissue issues. (Those results won't be ready until after my appointment with Dr. Fasano.) Also, I'm experiencing quite a few food sensitivities (tree nuts, most dairy), so again, I'm on a mostly positive trajectory but am a little nervous that I don't yet know everything that's going on.
Ever since March, I've adopted the mindset of acceptance that I have celiac disease. (That is a difficult reality to accept, but after reading the evidence, I've been convinced.) However, I was gluten light when I had the testing done, so my results were not clear-cut. Part of me has hoped that Dr. Fasano would still be able to give me a definitive answer -- because I do satisfy the 4-out-of-5 diagnostic criteria he established. I've also hoped that he would be able to test my zonulin levels to diagnosis me a different way (if zonulin levels remain high gluten-free, then it's celiac). However, now I'm concerned that he'll throw up his hands and say that there's really no way to tell after all and that I'll never know unless I do a gluten challenge. Gluten makes me feel terrible, so I am not going to do a gluten challenge...but basically I'd like a definitive answer so I know just how careful I need to be, especially when eating out and going to friends' houses (and needing to communicate the importance of cross-contamination).
Sorry for the long post, but I want to make sure I have a realistic expectation of the clarity Dr. Fasano will be able to provide. Does he conduct tests that are not yet commercially available (i.e. for zonulin or anything else)? Or will it be more of a check-up where he'll take some follow up labs and see if anything is high? Will he possibly test for other things besides celiac? I'd love for him to test me for food allergies/sensitivities, but is that what he does? Any words of advice from others who have seen him or Dr. Peter Green?
Thanks very much, (and again, sorry for the long post!)
Can anyone tell me whether root beer is generally safe or not? I just drank half a bottle of Old Dominion Root Beer before rethinking proprietary extracts listed on the ingredients (Root Beer Extracts #214, #79-400)...although no obvious gluten ingredients were listed, I'm concerned that those two extracts could contain gluten via malt.
As a side note, I am so depressed that I could not just relax and enjoy a root beer on a hot day without suddenly realizing my possible mistake. Any advice would be much appreciated. I already contacted the company via phone and email, but no info from them yet. So far, the posts on here discuss caramel color, which I know should be fine...but I can't find any info about malt and root beer.
I am newly-diagnosed and am traveling for work right now, and it is apparent that I'm still navigating the learning curve!
I tried to bring some gluten-free snacks with me but found myself at the train station, preparing to head home, and still needed to eat lunch. I had a choice - I could buy junky gluten-free snacks at the Hudson News, or I could look for a more balanced/nutritious option at one of the train station's restaurants. Wanting to keep my blood sugar level and get an actual meal, I went for the latter and headed to a deli that looked very clean on the inside. Everything seemed very contained, and the prep area seemed very clean. They had some tuna salad that they said was gluten-free and contained only tuna, mayo and celery. Okay, so far so good, maybe...but maybe I should have double-checked the mayo? It seemed like they made the tuna in-house, but should I have double-checked that?
I then asked if the tuna salad was touched with a knife that was used to make sandwiches and explained that I needed to be extremely careful about CC. They said that no knives came into contact with the tuna salad and explained that the salad was only touched with a metal spoon that was dedicated to that item. I made it doubly clear that any cross-contamination would be unsafe for me, and they seemed to sort of get it but without a true understanding of gluten intolerance. I bought it and ate it but was uncomfortable -- such a Catch-22 -- and felt like maybe I had made an unsafe decision, OR that maybe I was actually worrying too much about something that was safe.
So, my question is whether I did a good job scoping out the deli and asking questions, or if I was sloppy, possibly for the sake of getting a balanced meal...please be honest. I really appreciate your feedback, as this is a real source of stress and confusion for me right now. Some folks on here never eat out; meanwhile, others seem to navigate the eating-out world rather well and seem so comfortable. Being newly-diagnosed, I feel scared about eating out but realize that my lifestyle is such that I will sometimes have to do so and need to develop the judgement to do it safely. Thank you for your help!
Just wanted to share some good information about the Jack Black line of lip balms. I just spoke with the manufacturer, and they are gluten-free!
The products contain Vitamin E/Tocopheryl Acetate, which I have learned can be derived from either wheat, soy or corn. There wasn't anything noted on the company's site or elsewhere on the Internet, so I contacted them directly.
The person I spoke with put me on hold to confirm. When she returned, she stated that all of their lip balms are gluten-free. I was extremely appreciative and suggested that they update their website with this information since there are many people who could benefit from this info! This is one of the few lip balms that has worked for me, and it has SPF 25, so I am really excited I don't have to give it up!