Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New.. From California And New England :)

Jess-Ay

By Jess-Ay
in Introduce Yourself / Share Stuff

Recommended Posts

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    2. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    3. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    4. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

    5. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,017
    • Most Online (within 30 mins)
      7,748
    Kayy
    Newest Member
    Kayy
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.