Sara789

Medical Celiac Centers: UCLA Digestive Diseases Celiac Disease Program (Los Angeles, CA): https://www.uclahealth.org/gastro/celiac Mayo Clinic (Phoenix/Scottsdale, AZ; Jacksonville, FL; Rochester, MN): http://www.mayoclinic.org/diseases-conditions/celiac-disease/celiac-disease-care-at-mayo-clinic/ovc-20214747 Beth Israel Deaconess Celiac Center (Boston, MA): http://www.bidmc.org/Centers-and-Departments/Departments/Digestive-Disease-Center/Services/Celiac-Center.aspx University of Cicago Celiac Disease Center (Chicago, IL): http://www.cureceliacdisease.org/appointment/ University of Michigan (Ann Arbor, MI): http://www.uofmhealth.org/conditions-treatments/digestive-and-liver-health/celiac-disease BeyondCeliac.org List of Celiac Centers, Labs, & Alternative Resources: https://www.beyondceliac.org/celiac-disease/additional-information/hospitals-labs/

@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 and countless peer-reviewed medical journal articles I had binge read before my appointment). Good luck with UCLA. I'd love to get your impression on their celiac center and your experience there. I'm all about more information!

@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 this information, but didn't find one. If anyone knows of a thread that has this information, please share.

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? Any doctors to stay away from? 4.) Did you think it was worth the time, money, and testing? 5.) If out of town, how did you organize your trip? 6.) Was the staff helpful in organizing your trip? 7.) How much did you spend for the whole trip? 8.) What did you wish you knew before you made your trip? 9.) Any other advice? THANK YOU!

@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 breath test that is used to diagnose H pylori infection, carbohydrate malabsorption, and SIBO. There's also fructose malabsorption and pancreatic issues that have similar symptoms since you had your thyroid and Vit D checked. I don't know how helpful this is, but good luck! We have to be our own doctors and detectives so often.

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 was diagnosed as having celiac (blood test and biopsy) 2 months ago and react within 20 minutes of eating low levels of gluten due to cross-contamination. Lower levels cause lower levels of reactions with me, but they're still pronounced as due to gluten since food intolerance reactions I get are very different and don't last as long as the gluten reactions. I hope this helps.

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-free (ex: quinoa, oats, nuts, etc), mileage to and from doctor's appointments, and full cost of postage for gluten-free foods. The Celiac Disease Foundation has some guidelines and a step by step guide: https://celiac.org/celiac-disease/resources/government-benefits/tax-deductions-for-celiac-disease/.

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've been at it for 2 months and having lots of ups and downs. The Celiac Disease Foundation has unemployment benefits information if that's something that would be best for you: https://celiac.org/celiac-disease/resources/government-benefits/government-filings/. Like with medical issues, I've found it best to be armed with information when speaking with HR since a lot of times they don't know what employee rights and privileges are actually available. Each employer's HR department does things a little differently, so I'd read up on what yours requires and start the process if you need to. Good luck!

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: Contacted Amazon and they said their website reflects the actual product they send out. Website lists no wheat. Received product that listed it was manufactured in a facility that also manufactures wheat. Amazon returns are pretty easy; refunded my money and didn't ask for me to return the product. Order #1 from Naturade.com: Website lists no wheat. Received product that listed it was manufactured in a facility that also manufactures wheat. Called for a refund and was transferred to the manager. She gave me a hard time stating that the product was safe and I could use it. She kept saying that they advertise the product in a celiac magazine and wouldn't do that if it wasn't safe. I asked her to change her website since it doesn't reflect the product that is mailed to consumers. I also told her that I'm not willing to risk my health to try the product that lists wheat on a package. After a lot of talking, she agreed to refund my money and will pay for return shipping.

@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 and the product they sent me would make me seriously ill. I asked that they pay for shipping since I cannot use their product and it was misrepresented on the website when I bought it. The vendor emailed me back that I don't have to return the product, and I received a full refund. Now to unload the stuff on a non-celiac.

@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. I live alone, so my home is now gluten-free. The cat didn't have a say about her food. Some of my family and coworkers think it's a joke, but others just can't understand how serious it is or what cross-contamination is. I had a boss tell me she would rather have celiac disease than *her minor issue* because she likes salads. I felt compassion for the issue she was going through until it felt like she was competing with me for worse health issue. Too bad I don't like salads, otherwise celiac disease would be a breeze (Sara typed sarcastically). Keep on trying, that's all we can do. Setting up a little kitchen in your room (if you have your own room) is a great idea. It's a pain, but worth it. I now have a mini frig for my work office so that I don't have to worry about keeping my food in the contaminated community frig. My frig also stays a lot cleaner and doesn't smell.