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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New.. From California And New England :)
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8 posts in this topic

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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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

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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....

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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

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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

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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!

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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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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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    • celiac disease is psychosomatic
      The following link might be helpful for others experiencing simlar psychosomatic issues with doctors. Although it's only for psychiatrists, I think it should be for all doctors! http://www.psychsearch.net/complaints/ The neuropsychiatrist I saw might fall into this category? I can checkmark:

       Falsified medical records
       No Biological Test for "Mental Illness" (no blood, urine or other lab testing)
       No Informed Consent (if she sends my medical records to my doctors)
       Physical Illness Misdiagnosed as "Mental Illness"
       I was told I have a "chemical imbalance" (without any lab tests)
       Unethical Conduct
       Unprofessional conduct
       Something else that didn't seem quite right  
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    • celiac disease is psychosomatic
      The office is located in another city than where I go. There is no receptionist at the location closest to me meaning patients wait for the doctor to open her closed door to call their names for a consult. So, I would have to knock on her door which would really make her say that I'm sick since I keep writing letters AND showing up in person. The main office is too far for me to travel with road construction going on for the remainder of the year. I suppose I could mail the letter instead. But the staff is very irresponsible so it might be thrown away. The doctor probably told them that nothing needed correction in my records so ignore further requests from me. The other staff member I dealt with seemed normal, but I complained to the doctor about the staff member I dealt with today when she failed to update my phone number that I gave to her a few times (and which she said she updated), which resulted in me showing up for an appointment (I traveled a distance) one of the testers thought she canceled by leaving voicemail for phone number I no longer had. What I mean is I told the doctor that the staff member said she updated my phone number when the doctor asked me why I was there when I showed up for that cancelled appointment. Unfortunately, this staff member answers the phone most of the time. I'm sure she did what she could to make me look bad to the doctor to make her look good because I complained about her. I feel like scheduling an appointment with a psychologist to tell her what happened with this name calling. I'm sure it's against therapist code or I'd like a psychologist's feedback on this doctor's behavior. There are other patient complaints about her on the Internet how she laughs at patient's pain and suffering. I feel that's how she treated me. Update: The staff member called me back to tell me the doctor amended my report and she put it in the mail. I wonder if the doctor discussed what she said to me with another doctor who told her what she did was unacceptable in the medical field. I am hoping my report is amended or new negative comments are not added by the doctor to say I keep writing her letters or something in that regard.
    • celiac disease is psychosomatic
      The letter I am suggesting has nothing to do with the doctor.  I would type it and walk it to the desk when are in the building for your other appointment. 
    • celiac disease is psychosomatic
      Thanks. I'm not sure if the doctor will read another email I send and that's the way I'm told by staff to contact her. It will just confirm that I keep writing her letters although I only sent her one email about it! I already told the staff and her that I didn't want my medical records sent to any doctor's office, but I don't know if they will do it out of spite. It was scary talking to this doctor because she wouldn't listen or let me get a word in...I guess that's the reason why I feel the need to raise my voice at this office. When I requested a Lyme disease prescription from another doctor years ago before I knew I had celiac disease, this ignorant doctor told me not to come back to his office because there's no such thing as Lyme disease so only crazy people think they have it. I thought that was the worst experience I had with a doctor, but this experience was worse. I mean this neuropsychiatrist kept calling me a sick person over and over. It's so scary dealing with doctors like this. I really don't know how many other doctors may have wrote in my records that my symptoms are all in my head because celiac disease isn't real.   And my neurologist said this neuropsychiatrist was great. Maybe he says that about all the doctors he refers to patients to? I don't know if you call her personality psychopath since she appeared really nice during my consult, but she was thinking all this negative s*** in her mind at the time or different than she appeared to be.
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