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New.. From California And New England :)

Jess-Ay

By Jess-Ay
in Introduce Yourself / Share Stuff

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Jess-Ay Rookie
Jess-Ay
Posted

Hello there! I was diagnosed with Celiac disease in August. Actually, I received the call from the GI guy about my biopsy results when I was in a crowded airport on my way back to college (in new england). That was a joyful day, obviously :)

I found that the doctors I dealt with back home were pretty awful, actually. I'm a 4th year nursing student and am well aware of the importance of educating patients.. especially those newly diagnosed with a disease. However, all I was told was.. "yeah, you need to avoid gluten now." I didn't know much about this disease or what exactly gluten was. Therefore, I had to do a lot of research on my own. I'm still learning everyday what I specifically need to avoid, and how to cook (which is new for me). I recently got my latest lab results back and apparently I'm still not completely gluten free, which is frustrating to discover after all the effort I've been making.

It's been difficult transitioning, especially being so far from home. I have a really supportive family way out in California who always let me pick the restaurants when we go out to eat and cook gluten free meals when I'm home. My friends are great at school too. I'm finding that the hardest part for me so far is not being able to eat the available junk food and pizza on the weekends.. you know, late night munchies. I always get very excited to meet other people who make a life out of avoiding gluten, but they are few and far between.

I'd love to make more friends, so that I can learn more from everyone who has more experience than me. I still feel a little bit in the dark about everything, so I could use some help!

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Wolicki Enthusiast
Wolicki
Posted

Welcome to the board! You will find a ton of "kindred souls" here, because they have been throught the exact same things you are experiencing. Do a google search of "gluten free name of city" and it will give you some options for the munchies and find some great replacement products. Good luck to you! I am in OC in California, so if you are close when you are home, you can join us celiacs for a gluten free night out!

Janie

rosetapper23 Explorer
rosetapper23
Posted

I'm from the S.F. Bay Area, and I totally understand your need for pizza and fun foods to enjoy with friends. Gluten-free pizza, however, is fairly easy to come by here in California now. Is not available at restaurants where you live now? Do you have any BJ's Restaurants there? It's a chain that offers a gluten-free menu and a fantastic gluten-free pizza. If not, please check it out when you come home to California--they even serve gluten-free beer (Redbridge)!

We also have a very active gluten-free Meetup group in Bay Area. If you're ever in the area, check us out....

  • 4 weeks later...
cokids Newbie
cokids
Posted

Welcome to the board! You will find a ton of "kindred souls" here, because they have been throught the exact same things you are experiencing. Do a google search of "gluten free name of city" and it will give you some options for the munchies and find some great replacement products. Good luck to you! I am in OC in California, so if you are close when you are home, you can join us celiacs for a gluten free night out!

Janie

Hello!!

I am in Maine, so am on the other end of the nation and am a kindred spirit even though it is my husband NOT I who has been diagnosed with Celias. I plan to go gluten free WITH him! Just in learning mode right now, but I surely can sympathize with your concern about pizza nights!

Beth

Emma-Lee Rookie
Emma-Lee
Posted

Welcome. I live in an itsy bitsy town called Sebastopol California. I am recently diagnosed and learning too. I suppose with any new condition there is a learning curve. Don't beat yourself up too much. There are a lot of useful websites and my husband has helped me with this too. If you are interested in some good ones hit me up and I can e-mail you some links.

I am looking for Celiac support and friends too! This site is a great place. So hang in there and it will get easier.

Emma-Lee

  • 4 weeks later...
lillieflr Newbie
lillieflr
Posted

I am from the Bay Area in California, it is much easier to find fresh menus there than here in Nevada with all the chain restaraunts but it is what it is and I have noticed that some of them are putting gluten free meals on their menus now and Safeway has a gluten free section and there is always Trader Joes or Walmart. Also cooking from scratch. I was diagnosed Jan. 2010 after my biopsy, etc. It is hard because I am the only one in the house who has to eat this way and I miss so many things! BUT instead of ice cream you can eat frozen yogurt. It is yummy. If you are not completly gluten free you might want to look at your vitamins or pills if you take any, I just found that out. There are cheap cookbooks as well.

How hard was your transition from everyday food to gluten free? I did not realize I was eating so much of it trying to be healthy lol For years I ate and ate tons in wheat instead of white, etc. What school are you attending? How much longer do you have? I graduate next summer/fall. With you being a nurse at least you will know what it is like when others come in and know their pain. positive note.

Good LUCK!

Nicky

Hello there! I was diagnosed with Celiac disease in August. Actually, I received the call from the GI guy about my biopsy results when I was in a crowded airport on my way back to college (in new england). That was a joyful day, obviously :)

I found that the doctors I dealt with back home were pretty awful, actually. I'm a 4th year nursing student and am well aware of the importance of educating patients.. especially those newly diagnosed with a disease. However, all I was told was.. "yeah, you need to avoid gluten now." I didn't know much about this disease or what exactly gluten was. Therefore, I had to do a lot of research on my own. I'm still learning everyday what I specifically need to avoid, and how to cook (which is new for me). I recently got my latest lab results back and apparently I'm still not completely gluten free, which is frustrating to discover after all the effort I've been making.

It's been difficult transitioning, especially being so far from home. I have a really supportive family way out in California who always let me pick the restaurants when we go out to eat and cook gluten free meals when I'm home. My friends are great at school too. I'm finding that the hardest part for me so far is not being able to eat the available junk food and pizza on the weekends.. you know, late night munchies. I always get very excited to meet other people who make a life out of avoiding gluten, but they are few and far between.

I'd love to make more friends, so that I can learn more from everyone who has more experience than me. I still feel a little bit in the dark about everything, so I could use some help!

rosetapper23 Explorer
rosetapper23
Posted

You CAN eat most ice creams! Ben and Jerry's and Rainbow will note all ingredients, so you only need to avoid flavors like "Chocolate Chip Cookie Dough." Haagen Daaz is also gluten free as is Dreyers.

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  • 4 months later...
lilu Rookie
lilu
Posted

Hey there! So cal here... I was just thinking, why not whip yourself up some old fashioned chex mix? I checked the recipe online, and you'd need to do a couple substitutions, but nothing too drastic (no wheat chex, but more rice & corn chex... gluten-free pretzels or sub in some gluten-free crackers, etc), also, you want to make sure you buy a brand of worcestershire sauce and season salt that are gluten-free (I like Frontier Organics 'herby' but have to order it online) but overall I think you could make an excellent 'munchie' food in large quantities so you never have to be without.

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    • Mari
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      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
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    • catsrlife
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