Our Endo called last night with my daughters yearly blood work and he said that she is positive for Celiac. Can anyone tell me what to expect from here? I have an appointment on 11/29 with the gastro doctor and the endo said not to change her diet until after he sees her. What am I in for when she sees this doctor? What kind of testing could I expect from this? I printed out some information but I was wondering what everyone else expierienced. Thanks.
My daughter was also diagnosed with Celiac after her yearly blood tests. I did not change her diet and met with her gastro. He performed and endoscopy with a biopsy. The endoscopy is while the child is sedated. The doctor will most likely tell you if he sees any damage in the lining of the childs stomach but the biopsy tell you for sure. I made sure to get a second opinion on the biopsy because my daughter had no symptoms of celiac. It came back positive. She was placed on a gluten free diet. My daughter is 11 and was diagnosed with type 1 when she was 6. She was diagnosed with celiac at 10 years old.
On a personal note, i can tell you that the celiac was harder for her to accept then the diabetes. The diet is restrictive and expensive. You have to buy gluten free bread, pasta and sauces. No more cake, cupcakes and candy unless its gluten free. A gluten free cake has cost me about $50 for her birthdays because I have to get it made at a special bakey.
Hi Holly, My son was diagnosed with celiac two months after his diabetes diagnosis at the age of 10 (2 years ago). It is a very big adjustment. My son also took it harder than his diabetes diagnosis. But, things will normalize the more you live with it and learn what she can/cannot eat.
My son's celiac panel numbers were so high that they did not do an endoscopy, they said the blood work was clear enough.
I remember reading about celiac and thinking that obviously we were not going to have to live by such a strict diet, but she will. Luckily, grocery stores are carrying more and more gluten free options as well as sometimes having an entire gluten free section and labeling. Betty Crocker along with many other brands make gluten free cake mixes. Udi's makes excellent bread. Tinkyada makes delicious rice pasta that you'll never notice the difference in. Restaurants are becoming more aware of which foods are unsafe and about cross-contamination. Lots of 'normal' foods are already gluten-free.
Not sure if you have an iphone, but there are some great apps for looking up foods and ingredients to see if they're safe or not.
Bisquick gluten free is also great and so is Jules gluten free to make cake and cupcakes.
The emotional issue with celiac and diabetes has been very difficult. My daughter took it hard because its "one more thing" she has. She says she wants to be a normal child and thats really difficult to deal with as a parent. I have kept her on the right track by explaining that its not the worse thing she can have, but its still hard to keep it toghther. I encourage her and keep her strong by telling her what a great job shes doing controlling her diabetes and celic. Her recent test on her celiac came back at 2% which means shes doing really well.
My 5 yr old, Gabe (T1D + Celiasc DX @ 4 yrs) adjusted quickly to Celiacs. I think age of dx has quite a bit to with how well kids/people adjust. Gabe went thru similar medical procedures to confirm his Celiacs.
Finally, I don't know how much it mattered to Gabe, but I also went GF as a show of solidarity. And frankly, I've never felt better - my doctor supported the decision too and accurately predicted an improvement in my blood work. Same held true for my mom. We suspect there is a gluten sensitivity in our family. Plus, we're cooking more at home, which is likely healthier anyway since we use less/better fats and salt and no preservatives.
Actually, I've found that eating GF makes Gabe's diabetes a bit easier to manage. Now, since we pack a lunch for him every day, we know exactly how many carbs he's eating and can make sure he has fresh and tastey fruits and veggies . As a result, he eats better and his carb count is a bit more predictable/accurate. Frankly, I'm a bit ashamed that I don't insist that my 7 yr old (non-diabetic non-celiacs) daughter eat similar lunches.
We rely heavily on Udi's and Bob's Red Mill GF flours and mixes. For the occasional fast food burger, In-n-Out can make you an allergy burger i.e. protein style. And, the only thing that touches their frying oil are potatoes, ,Gabe/I can either eat the burger protein style, or bring along an Udi's hamburger bun.
Hi! We are in the opposite boat as my daughter was diagnosed with Celiac in July 2011 and just diagnosed with T1 in October 2011. (I was diagnosed T1 in 8/1980 and Celiac 1/2011). My youngest (2) was diagnosed with Celiac in August 2011.
What are you in for? At the appointment they will take the usual medical history and discuss the blood test results with you. Depending on what the doctors office ran, they may do additional bloodwork but in my daughters cases they did not. The reason they haven't had you change her diet is that the usual protocol is to schedule an upper endoscopy to do a biopsy. Sounds scary but it really isn't too bad. In order for the results to be valid she will need to be still eating gluten. The "great" thing about Celiac is that keeping to a Gluten-Free diet will heal all the damage and pretty much make her back to "normal" in a matter of a few weeks. For the biopsy, in most cases, they will put the child under general anesthesia and then put a tube down her throat to do a biopsy of the lower stomach, duodenum, and little intestine. It is not a "surgery" and recovery is pretty much as long as it takes to come out of the anesthesia.
The gluten-free diet has gotten much easier over the past few years and isn't too bad. Many things she was eating will be fine and there are substitutions that look and taste very similar. With this age group the tougher things are the Cheez-It minis, Goldfish, etc that are common in kids diets these days that aren't gluten free and there aren't "exact" substitutions. We've found many things we do like and I make my own cheese crackers that taste like goldfish that are actually pretty easy and cheap to make. I've tried to make it an adventure to try new things that are gluten-free.
Yes, some foods are more expensive. A loaf of Udi's (small white bread) is $4.89 at my super market and is smaller then the $.99 store brand loaf of bigger size. :-( But many things aren't too bad. We love the Snyders of Hanover Gluten-Free Pretzel Sticks taste a lot like their "regular" ones and pay $2.99 a bag. I make bread for us now in my bread machine, and my daughter loves to make banana bread muffins as well. Eating out is tricky with any food allergy/intolerance but you find places that works for you.
As for blood sugars, I can only attest to what I have seen as my daughter was gluten-free already before her T1 diagnosis. I found once my body repaired itself that I did have an increase in insulin needs as my body was finally absorbing more of the nutrients I was eating and thus carbs. Also gluten-free foods tend to have a higher glycemic index because they are often made from rice/brown rice so they hit the blood sugars a bit quicker. I have other T1/Celiac friends though that didn't notice much of a difference.
My daughters and I have a form of Celiac that is refered to as Latent. So we don't really experience symptoms from eating gluten which is frustrating. But because it is an autoimmune disease it seems that it is more common with t1s. Sorry to hear that she had positive bloodwork and hope you can gets some answers soon!