Newly Diagnosed And Scared!

[Tori F.]

Hi Everyone,

I have been diagnosed with celiac disease for about a month. I am really beginning to get nervous. I have been "surfing the web" for information to help me understand this diease and, until finding this site, it seems like all I read is cancer, poor bone density, amemia, ... I feel like I have been given a death sentence. I have two small children to watch grow up and I am quickly beginning to get freaked out. I would really like to hear something positve. Thanks eveyone! Tori

[lizard00]

Welcome to the forum!

Most of the problems associated with Celiac are things that can happen if Celiac is untreated. SO, give your doctor a big ole thanks for helping you avoid all of those things. One redeeming thing about this disease is that you don't have to take a pill, so no side effects from that. It seems overwhelming at first to avoid eating gluten, but it becomes second nature, and when you have the incentive to become and stay gluten-free, it's that much more easier. So, you're not doomed, you are far from it!!!

[Adelle]

You are gonna be JUST FINE!!!!! Trust me!! I'm at 20 months gluten-free now, and I almost never even THINK about it!!

Yes, it's hard, even terrifying at first. But it gets easier, and fast!! Soon this will be old hat.

Welcome to the club

[kmoore]

Hi

My name is Kim. I was dignosed a couple of months ago, so I know how you feel. My thing is eating out. Which seems imposible now. I am also trying to shop without spending a fortune. But since I found this web site there is hope!! And of couse with God all things are possible!!! It will be a new life style, but a healthy one too!

[Welda Johnson]

Hi Tori,

I'm here to reassure you that your life will get increasingly better, and you will feel increasingly healthy. I'm 63 and have had Celiac apparently all my life, but it took years to diagnose, since the term Celiac was considered relatively rare until a few years ago. I can empathize with your concerns.

About eating out: I almost always take food with me wherever I go. It beats going somewhere and being hungry. Saturday at Legoland I found green salad with Italian dressing, along with some fries, and was so happy. Then when the salad came it had croutons on it. Duh! I explained to the waitress that I was allergic to croutons and she immediately had another salad for me. I gave her a big tip and we all ended up happy. That's how easy it can be. For an unexpected birthday dinner for my grandson that night I hit Costco and bought corn tortillas, refried beans and green chiles. While the rest of the family ate pizza I ate my selections. My family has learned that I will always take care of my own menu, so they don't have to be responsible for me.

A lot of Mexican Restaurants are friendly places, since we can indulge in corn tortillas, refried beans, tamales, enchiladas, salsa, salads, etc., all without cheese for me (I have to avoid all grains, all milk & dairy, egg whites & yeast, and I recently stopped eating meat as well--I feel great). Most places have baked potatoes, green salad, vegetables, and when I used to eat meat I would always just order hamburgers and hot dogs and other things without the bread. You can make a wrap with lettuce and pick the foods up. It's easy.

My suggestion is to list all the restaurants where you used to eat and all the foods you used to enjoy and then get a list of as many vegetables, fruits, nuts & seeds, soy products, corn products, and potato products as you can find and coose the substitutions you are allowed to eat. Henry's labels their gluten free products, and Trader Joe's identifies gluten free products in a flyer. This is a good time for expanding your thinking, for being inventive and creative, for being kind and gentle with yourself and with others.

Do you cook much at home? With two little kids I'll bet you do. Have they been tested yet? I helped raise my grandson and we learned that he also has Celiac, so I learned a lot when I was his primary daycare provider. We used Enterolab.com to have a home test that diagnosed his intolerances to all grains and all milk & dairy. If you'd like to email me (Welda@att.net) I would be happy to share with you all the details of how our family has adjusted to Celiac (my sister also has it). I wish you health and happiness! Welda

[gfgypsyqueen]

Hi and welcome to the neighborhood

I've been sick with "stomach problems" on and off all of my life. I was finally diagnosed as a Celiac 5 yrs ago. The first few months can be really overwhelming. But it gets so much easier! I feel better now than I ever have. I don't get sick as much as I used to either so that is nice.

I have two small kids. One has a serious nut allergy and the other has Celiacs, milk allergy, shellfish allergy, and possibly more. It sounds hard, but the kids learned very fast not to share food, not to accept food from any other parent or adult, and to read labels. My then two year would "read labels" at the store to try and help out. It always cracks me up! Plus both of them proudly announce to anyone who has what allergy in our family. You have to laugh when they do it.

BTW, we still eat out. When it was just Celiacs and the nut allergy, we ate out all the time. (Look for restaurants with gluten-free menus to start out.) But now the youngest is still reacting to something, so we don't eat out much. That of course saves some money to make up for the money spent on the more expensive foods Plain foods like burgers no bun are usually safe.

Post some more questions if you need help getting started. (Clan Thompson food lists really helped when I started out.)

[rickman]

Tori,

I was diagnosed a week ago so I can relate to your concerns. I am 40 and have 2 children 8 and 9. I have spoke to our pediatrician and will test the kids in June after all our vacations. This might not be the best but both sets of grandparents are taking the kids out of town so I am going to wait until they get back. I live in Texas and have grown up with biscuits and gravy for breakfast. It seems that everything...family functions to dinner out has gluten in it. But we will get through this. This is my first post so I hope I haven't brought you down. I just know that I need to be healthy for my kids and so do you. If anyone out there has any helpful hints to beginners I will take anything you have to offer. I am finding the mixes are not the same. If anyone has helpful hints to what to sub for flour in cornbread, cakes, etc. I would greatly appreciate any help. I live in a rural area so I can't seem to locate any support groups, if ya'll have any suggestions for that I appreciate that too.

thanks!