I Have Just Been Diagnosed With Celiac

[tarnalberry]

Thanks again everyone. I just had my first gluten-free meal. I had chicken and some gluten-free pasta (I forgot the brand). The pasta tasted pretty good, it was a little tough but I got used to it. Overall, I am satisfied.

I also found these really good pretzels. They taste exactly the same!!!!

FYI, you can adjust the toughness either by trying different brands or different cooking times. It's all new learning! Congrats on your first success!

[Susanna]

Hi Jesse--It IS so hard in the beginning--missing all our favorite foods, feeling left out at work parties and social occasions because we can't eat the regular food. It sucks. We go through an actual grieving process as we adjust to our new diet. I was shocked when I got diagnosed--then I was HUNGRY, because I didn't know what to eat--VERY LONELY AND ISOLATING FEELING.

But. It. Gets. Better. I promise.

One thing that REALLY helped me in the beginning was to figure out a few gluten-free treats I could eat (in my case, Baby Ruth candy bars) and I stashed them everywhere--my car, my purse, my office, home. Then, when those around me were enjoying some gluten-filled treat, I could access my own stash, have a little candy party of my own, and not feel left out. This really helped my feelings of deprivation.

Another thing that has really helped me: making the decision that it is MY responsibility to teach those around me about my illness and its implications. It's a funky disease that the general public has never heard of, so they're not going to understand your situation unless YOU tell them about it (in detail). By NOT expecting them to figure it out on their own, I'm not let down when they don't understand, I just realize that I have more teaching to do.

One last suggestion: When you're at a grocery store, or a restaurant, or a party and there's food around you that you used to love and can't eat anymore, you gotta look at that food--the food that's been poisoning you all your life, and you have to say to it, "You can't hurt me anymore--I won't ever let you hurt me again." During these times, it's especially important that you eat before you go there, or you bring yummy gluten-free food with you, because being around food you can't eat, or other people eating food when YOU are hungry is just awful.

Advocating for myself in these ways has been great for my self esteem, and it's really helped me cope with having celiac disease (almost one year gluten-free now, yay)!

And, as time has gone by and I've figured out some meals I can eat (and that I like), the coping has gotten much easier.

Good luck!

[Susanna]

Welcome! It is all very overwhelming at first. I am pretty new into this still but it does get better. I try to think day by day. I LOVE candy and I can't even imagine that I can't ever have any again. So I don't think about it. I'll deal with it later and maybe I'll find other types that I can have instead.

This is a great place to get help, vent, what ever. This place if full of people that know what you feel.

Hey, akjenny--good news for us: lots of candy is gluten-free: Baby Ruth, Snickers, Reeses peanut butter cups, Hershey kisses, milk and dark chocolate in general (beware of varieties that have cookie crumbs), Butterfingers, Starburst, Skittles, Hot Tamales, Payday, and the list goes on and on. Valentines Day is coming up--so you might wanna call your favorite chocolatier and ask about gluten-free varieties of their products, so you can tell your sweetheart what kinds are safe for you. Most of Sees chocolates are gluten-free.

Some candies do contain gluten and are no-no's:

Twix, Nestle crunch bar, Cookie and cream Hershey bar, Take-5, Kit-Kat, licorice, Good n Plenty, and that list goes on and on.

sweet eating,

Susanna

[Betty in Texas]

Hello Jesse: Sorry you have to go through all of this you sound really young we all know how you feel I never heard of this disease before and when I heard from my GI dr and he took me in his office and took a long time explaining what this was all about and how I would have to treat it for a life time . I was so scared I cryed I was 52 years old this was 3 years ago . And I didnt know any thing about a computer so I bought books and read . Then I got smart and got a computer and taugh my self how to use it . And man this site teach me all I know and still learning . I cant tolerate the gluten free breads are cearls I just eat plain old foods and it keeps my tummy happy and I can smile keep your head up you don't want any of that nasty food in your mouth it is not worth the pain . I will be thinking of you .

[rtilil]

hi, donna,

where do you go to get tested for adrenal fatigue? i live in israel, i would need to know what kind of doctor does that type of testing?

thanks,

reva.

Hi and welcome!

[Guest lorlyn]

Hello Jesse: Sorry you have to go through all of this you sound really young we all know how you feel I never heard of this disease before and when I heard from my GI dr and he took me in his office and took a long time explaining what this was all about and how I would have to treat it for a life time . I was so scared I cryed I was 52 years old this was 3 years ago . And I didnt know any thing about a computer so I bought books and read . Then I got smart and got a computer and taugh my self how to use it . And man this site teach me all I know and still learning . I cant tolerate the gluten free breads are cearls I just eat plain old foods and it keeps my tummy happy and I can smile keep your head up you don't want any of that nasty food in your mouth it is not worth the pain . I will be thinking of you .

Hi Jesse, Just wanted to say welcome to the board. I found out in November 06 that my 10 year old daughter has celiac and it was a big shock for my family. Just about everything she ate contains gluten so she was devestated. The only thing I new to do for her in the beginning was to start with the things we knew were gluten free like steak, chicken, fruits and some cereals. my daughter does not like many vegetables or salads. Now we have been on the diet for 10 weeks and we are getting to the hard part of trying to find new things for her. I know it is hard but for your health in the future what choice do we have. I also know in the long run she will grow up healthier. Take care

[jlynn]

Hi Jesse--It IS so hard in the beginning--missing all our favorite foods, feeling left out at work parties and social occasions because we can't eat the regular food. It sucks. We go through an actual grieving process as we adjust to our new diet. I was shocked when I got diagnosed--then I was HUNGRY, because I didn't know what to eat--VERY LONELY AND ISOLATING FEELING.

But. It. Gets. Better. I promise.

One thing that REALLY helped me in the beginning was to figure out a few gluten-free treats I could eat (in my case, Baby Ruth candy bars) and I stashed them everywhere--my car, my purse, my office, home. Then, when those around me were enjoying some gluten-filled treat, I could access my own stash, have a little candy party of my own, and not feel left out. This really helped my feelings of deprivation.

Another thing that has really helped me: making the decision that it is MY responsibility to teach those around me about my illness and its implications. It's a funky disease that the general public has never heard of, so they're not going to understand your situation unless YOU tell them about it (in detail). By NOT expecting them to figure it out on their own, I'm not let down when they don't understand, I just realize that I have more teaching to do.

One last suggestion: When you're at a grocery store, or a restaurant, or a party and there's food around you that you used to love and can't eat anymore, you gotta look at that food--the food that's been poisoning you all your life, and you have to say to it, "You can't hurt me anymore--I won't ever let you hurt me again." During these times, it's especially important that you eat before you go there, or you bring yummy gluten-free food with you, because being around food you can't eat, or other people eating food when YOU are hungry is just awful.

Advocating for myself in these ways has been great for my self esteem, and it's really helped me cope with having celiac disease (almost one year gluten-free now, yay)!

And, as time has gone by and I've figured out some meals I can eat (and that I like), the coping has gotten much easier.

Good luck!

Just read your post. I was recently diagnosed, and have been soooo hungry. Right now I am starving but do not know what to eat because everytime I eat I feel nauscious and sick, I think it is worse than the hunger. this is really hard!!!

[Susanna]

Hey, jlynn--that time just after diagnosis, but before you figure out what to eat is SO hard! Going around hungry is the worst!! And so lonely-feeling. Hang in there.

If you're nauseous--your gut will probably need some time to settle down. During this time, I recommend you keep your diet simple--eat things that are of course gluten-free, but also that are easily digestible--don't make your healing gut work hard by eating hard-to-digest foods (fats, dairy, heavy meats, spicy things). Instead, eat cooked rice with a little Italian dressing for flavor, rice crackers (I love Nut Thins--get these at the health food store), apple sauce, bananas seem especially soothing to a cranky gut. In moderation, nuts (especially almonds), Lara Bars (health food store), legumes (your health food store probably carries those cardboard cups of instant split pea soup--great for at work), canned lentil soups (read labels), other fruits and veggies, etc.

Depending on how damaged your gut was at the time you went off gluten, it may take a while--even months for the gut to heal. Be patient with yourself. After you start feeling better, add things to your diet like dairy cautiously (start with yogurt, feta cheese, as these are easier to digest than ice cream).

This phase is hard, but it's only TEMPORARY.

Quick snacks that are naturally gluten-free: cottage cheese on a rice cake, with a few raisins sprinkled over. Yogurt (yogurt becomes a mini meal when you stir in cottage cheese), Peanut butter on a rice cake, Baby Ruth candy bar (and Snickers, and Hot Tamales, and Butterfingers), Cheetos, tortilla chips, popcorn, peanut butter on a celery stick, trail mix (with nuts, fruit, choc chips/M&Ms--but with NO pretzels/crackers), nuts, fresh or dried fruit, deli turkey and a piece of Veggie Singles cheese rolled up in a piece of lettuce (we LOVE lettuce wraps at our house).

Always pack snacks and bring them with you wherever you go--it will take you a while to figure out what out there is safe for you, so in the meantime, don't rely on being able to find ready gluten-free food at work or a friend's house--pack your own til you figure this out. Because, going hungry is the worst!

Good luck!

Susanna