GF-Cheetah Cub

My daughter had the endoscopy when she was ten. It is a rather simple procedure. We went to the hospital early in the morning. They put her out first, which took just a few minutes. I got to stay with her and held her hands until went to sleep. Then the procedure itself took about 10-15 minutes. She came out, and stayed in a bed for an hour or two, then we went home by lunch time. My daughter went back to school the next day. You have to fast for the endoscopy. So, you want to the book the earliest appointment possible. It is not easy for kids to not eat anything for long periods of time during the day.

If you were diagnosed 6 years ago, and have maintained a gluten free diet, your blood tests and endoscopy are supposed to be normal. It means your body has healed, but Celiac is a lifelong disease, you can not go back to eating gluten. Sorry. My daughter is also a non-symptomatic celiac. She was diagnosed by blood test, followed by the endoscopy. We further confirmed that she has Celiac gene. Until they found us a cure. My daughter can not eat gluten, even though she is non-symptomatic.

I agree. What you need is a good doctor. You shouldn't have to worry about how to convince a doctor about feeling sick and helpless. Crohn's is indeed a very serious disease, and even more difficult to control than celiac. People with Crohn's tend to avoid a lot of food, including gluten. Good luck to you!

I am sorry to hear about your frustrating experience with the physicians. To me, the real question is: are you on a strict gluten free diet, and are you feeling better and healthier? If you are, you don't need to "convince" any doctors, you don't need their blessing, certainly not their attitude. It is your own body, if you know that gluten makes you feel bad, don't eat it. My daughter was diagnosed 4 years ago. We haven't seen our GI doctor in 3+ years. Celiac disease does not require medication. You self medicate through a gluten free lifestyle. BUT...if you have been on a gluten free diet for years now, and still have issues, then you might want to be open to listen to the GI doctor about other possibility (perhaps in addition to celiac) that could be giving you health problems.

Oh! That is good to know. I always wondered about the two different spelling myself. So, it is like center vs centre!

"Is it also possible to see absolutely no damage, but then the biopsies come back showing damage?" Yes. This happened to my daughter. After her endoscopy, the two doctor came to tell us that they did not see damage. But two weeks later, the doctor called to tell us that her biopsies came back positive. So, just sit tight and wait for the official biopsies result.

You don't have to have all the celiac genes to have celiac. One such gene is enough. Yes, if you have positive biopsy, you have celiac disease. Yes, your son, as well as all close family members should be tested.

"I think its important for the person I share a living space/kitchen with to understand it but I could be wrong. " -- You are not wrong. " ... to consider ordering from a place that has gluten free option ....Was I in the wrong to make that request? " -- Absolutely not. Celiac is an auto-immune disease, and the only treatment option is a gluten free diet. If your partner can't be bothered to learn about it, and is unwilling to accommodate your easily doable request (you are not even trying to ban gluten in your home! Lots of people here do.), I think you need to seriously consider if this relationship has a real future. And it is not just his unwillingness to accommodate you, he seems to have a very bad, and even mean spirited attitude about your new gluten free lifestyle. Eating gluten free is not easy, and it is not a lifestyle that we choose, it is necessary to keep ourselves or our loved ones healthy. When my 14 year-old daughter was diagnosed 4 years ago, our entire household went gluten free, and we only go eat at restaurants with reputable gluten free options. I always told her that as she grows up, and form relationships (friendships included), it has to be with people who love her enough and are kind enough to accommodate her eating restrictions. Anyone can't bothered, isn't worth her time.

My daughter also loves to make ginger bread house every Christmas. I buy this gluten-free kit every December from a gluten free bakery called Sensitive Sweets. They ship the kit to our house. http://www.sensitivesweets.com/holiday-items/gluten-free-vegan-gingerbread-house-kit

Oh, thank you so much!! The Larkburger and Beau Jo's are perfect. They both have locations in Ft. Collins. We will be having a few family gather catered meals and a church pot luck lunch, so I need to be able to go somewhere and pick up a quick burger or pizza to go just for my daughter. Thanks!

Oh, we are actually going to Ft. Collins this weekend to attend a funeral service. If anyone know of any good gluten-free restaurants there, please let me know!

Maui is quite a gluten free paradise. It has a 100% gluten free restaurant, as well as a 100% gluten free bakery. Many restaurants offer gluten free menu or options, generally, great awareness of gluten-free dinning at most restaurants. Some ice cream shops even offer gluten-free cones, kept sealed in a container in its own area! We live in Northern Cal, which has pretty good gluten-free dining options. We visit Maui at least once a year. We were thrilled to learn about their generous gluten-free dining options after my daughter was diagnosed. My celiac daughter tried to lobby for us to move there, ha ha.

Don't be sad. You can most certainly eat out and enjoy travel (big and small trips). It does require a bit of research and planning, that's all. Everything is online nowadays, so researching is easy. My family loves to eat out and we LOVE to travel. Many restaurants offer gluten free options. After my daughter was diagnosed, we traded our old favorite restaurants to a handful of new ones. We have trusted restaurants and eat out regularly. My daughter was diagnosed just under 4 years ago, and in that time, we have been to Europe, Peru (We did the 4 day hike to Machu Picchu and visited the Amazon river), a Cruise, Hawaiian islands, and winter snowboarding trips to Canada, Colorado, and Lake Tahoe. We also did a 9 day long college tour road trip on the East Coast. This dietary restriction can definitely be challenging at times. But with a little research and planning , your lifestyle does not have to suffer.

cyclinglady, I think Joseph is hoping to exclude celiac disease. I feel for him, as I also had a hard time accepting my daughter's celiac. I had this gene test done hoping our GI doctor made a terrible mistake. But now I have triple prove that my daughter really does have it! I agree with you and others, that if biopsy confirmed celiac disease, you do have celiac disease. (But on occasion, doctors can be wrong, right?) However, I have a distant relative (not related by blood) who thought she had celiac diease for 10 years (no biopsy done), lived a strict gluten free life style, but still suffered from health issues, ended up in the mayo clinic, and found out that she did not have celiac. She did not have the celiac gene.

Our doctor ordered the Prometheus Celiac Plus test for us. It is some sort of in depth celiac blood test. This test report showed which celiac gene my daughter has. I think you can ask your GI for a celiac blood test with EMA. When I asked for the EMA test, we got this Celiac plus results back. I believe Prometheus is the name of the lab. Our insurance paid for this test. If your insurance won't pay for it, I know there is a lab in Colorado that offer this test for a few hundred bucks. You have to google for it. I forgot their name.