Sara789

Medical Celiac Centers: UCLA Digestive Diseases Celiac Disease Program (Los Angeles, CA): Open Original Shared Link Mayo Clinic (Phoenix/Scottsdale, AZ; Jacksonville, FL; Rochester, MN): Open Original Shared Link Beth Israel Deaconess Celiac Center (Boston, MA): Open Original Shared Link University of Cicago Celiac Disease Center (Chicago...

@TexasJen - I'm so glad you got a diagnosis, but I'm sorry your GI hasn't helped you more than "see you in 1 year." My GI was terrible, despite being listed as a "Celiac GI Specialist" on the Celiac Foundation website. She just stared at me when I asked questions and told me erroneously incorrect information about celiac (incorrect according to the 5 books...

@ironictruth - Thank you for the information! I think this can help a lot of us who are interested in finding medical professionals knowledgeable about celiac disease and the myriad of complications that can be associated with it. Good luck with your visits. I hope you find the answers you need to feel better. I tried to find a place that already had...

PLEASE HELP. I'm not getting the care I need locally and am planning a trip to a celiac center. 1.) What celiac center did you go to (Mayo Clinic, Univ of Chicago Medicine Celiac Disease Center, Beth Israel Deaconess Celiac Center, etc)? 2.) Why did you pick that celiac center over the others? 3.) Are there any doctors you recommend...

@cyclinglady- Thanks.

Hi Rebeccalee, It's so frustrating to be dismissed by the people who are supposed to be helping us. I'm sorry. I haven't been gluten-free as long as you, but I'm dealing with this too. I went to a very basic diet when I was diagnosed but foods that were fine are now giving me trouble. Fruit and sweet potatoes to be specific. There's a hydrogen...

Will being on a SIBO diet mess with a future hydrogen breath test?

Hi hiddenbutterfly, Welcome! Have you been tested for anything? Have you seen a doctor about this? If not, my suggestion is to keep eating gluten and get the celiac blood panel and upper endoscopy biopsy (if needed). Finding out what medical problems you might have is important, sometimes imperative, to getting the right treatment. I...

Tax Deductions for Celiac Disease Certain expenses for being on a gluten-free diet can be paid for through a Health Savings Account (HSA) or Flexible Spending Account (FSA), or can be itemized on a Form 1040, Schedule A for your taxes. Some expenses include the difference between gluten-free foods and the same product that is not labeled as gluten...

Hi Mandy, Welcome and I'm sorry you're having such a hard time of it. I felt completely dumped/abandoned/etc by the health care professionals I went to for help. This forum has been so helpful. It's still hard, but the people here share their experiences and knowledge to help others. Keep advocating for yourself and learn as much as possible...

I'd also be interested in WHERE people buy things: Online, local grocery store, etc?

UPDATE I'm 0 for 3. Order #1 from Amazon Vendor: Website lists no wheat. Received product that listed it was manufactured in a facility that also manufactures wheat. Took a while, but vendor refunded my money and didn't ask for me to return the product. (Thought maybe it was an old batch I got with an outdated label) Order #2 from Amazon directly...

@Ennis_TX - Thanks! I'll have to try something else. I ordered the product and got another one that listed it was manufactured in a facility that also manufactures wheat.

UPDATE I was contacted by the vendor by email stating that I could return the product for a full refund, but I would have to pay for the return shipping. I emailed them stating that the product they sent me was different than the product advertised on the website and included screen shots and pictures of the product. I also stated that I had celiac disease...

@Poodle<3 - I'm sorry about the trouble with your family and your symptoms getting worse after going gluten-free. My symptoms got extremely worse after going gluten-free: brain fog and brain issues that felt like I had suffered a concussion, burning bone and joint pain, etc. It was strange. After about 1 month on the GFD, I finally started to feel better...