Support

[elf41980]

Hi everyone I was just diagnosed and am still detoxing. I feel awful and am a mother of 4 with a shared kitchen. I live in central Jersey does anyone know if there is a support group around here?

Thanks Elf  

[GFinDC]

Hi,

Maybe check some of the links in the Goggle search below?  There is also support on this forum as we have many members who have celiac or NCGS and are glad to help.  There is a Newbie 101 thread in the Coping With Celiac forum section that has some tips for getting started on the gluten-free diet.

https://www.google.com/search?q=celiac+support+new+jersey&rlz=1C1CHBF_enUS806US806&oq=celiac+support+new+jersey&aqs=chrome..69i57.8139j0j8&sourceid=chrome&ie=UTF-8

[cyclinglady]

Sorry, I do not know, but someone else might.  

Consider using the forum search box.  Search for member Jebby.  She is no longer active but she offers excellent advice.  She has her own website which is not very active anymore either because she juggling a career and a large family.  Her real name is Dr. Jessica Madden and she is a preemie doctor.  She has celiac disease and a bunch of kids.  She found that her small  kids were making her sick.  Too many gluteny kisses, I guess.  She made her house gluten free.  

You might consider that or really looking into strict kitchen practices. 

My house is gluten free.  My kid got her gluten fix at at school and away from home (except for challenges when I had her tested twice even though she was asymptomatic).  It is not more expensive to be gluten free if you think outside the box.  

Please get your kids screened.  This is a genetic disease.  ☹️

Edited October 16, 2019 by cyclinglady

[Lynne W]

I'm also new to Celiac and learning how to avoid the unexpected contamination from children and grandchildren who share my home and kitchen. 

Cycling lady said something like eating gluten free isn't more expensive if you think outside the box. Sure would like a guide out of this box. 

 

 

[cyclinglady]

I want to add, that @elf41980,  you are just four months into being gluten free.  It takes time to heal.  So frustrating, I know (as most of the form members can attest).  My diagnosing GI told me my biopsy results and then said that I had lots of gluten-free options as he rattled off a few restaurants.   It was obvious he never tried being gluten free.  

I knew the gluten-free diet well.   Why?  Because my own hubby was advised to trial the gluten-free diet without being tested for celiac disease (two medical doctors!) 19 years ago.  He took their advice and went gluten-free.  He struggled with the diet during that first year.  It was hard!  I learned to cook and bake gluten-free.  While I made Gluten-filled breakfasts and lunches for my daughter and me, our dinners were always gluten-free.  I learned to haul safe food around which was not so difficult because my own mother did the same thing when we traveled.  We picnicked then because we could not afford to eat out and fast food was not readily available back in the days of covered wagons!  ?

I was pretty content with our shared kitchen until my diagnosis 12 years later.  Believe me, I was shocked (my only symptom was anemia).  After my diagnosis, we made the entire house gluten free.  It was just easier.  I needed a safe place to relax in.  Our daughter was old enough to want to help in the kitchen.  It made sense for us.  We all need to find our own way.  I can not stress this enough!  

Our daughter thrived on a gluten-free diet (we all did).  No one needs wheat, barley or rye to survive.  We all know that.  It just happens to be in so many processed foods!  She also had access to gluten while at school or with friends.  

Because we all had some additional food intolerances, eating non-processed foods has been our best approach towards good health.  We have also saved a lot by not eating out (lots of risk).   Yep, no eating out (rarely and only at Dedicated gluten-free restaurants for us).   It saves a ton of money, so that I can purchase the best meats, fruits and veggies and never feel deprived.  We socialize, but we bring our own food or just order a drink.  Family and friends have adapted.  Everyone knows not to bring a pie to my house.  Instead, they bring ice cream, fresh uncut fruit or a bottle of wine.  It works.  

Everyone also washes their hands when they come into the house.  It is a good habit.  

Thinking outside of the box?  @Lynne WWe make tacos or lettuce-wrapped sandwiches instead of gluten-free bread which I do not like but hubby does.    I recall some family members moaning about the lack of hamburger buns at party we hosted.  I showed them how to wrap their hand-made burgers and top them with cheese, avocado, bacon, tomatoes, etc.  I heard them say it was one of the best burgers they ever had.  They also line up every Thanksgiving for a gluten-free dinner.  No complaints ever!  

Now I work from home now.  It is a bit easier to prepare food from scratch.  But I did work away from home at times.    I just spend time planning meals (taking advantage of sales) and doing prep work on the weekends.  My freezer is one of my best friends.  

We visit family and stay for extended periods.  At my parent’s house, I keep a bin of kitchen tools.  They are stored at the bottom of their pantry.  We also stay at my parent’s vacation home that can have multiple families with gluteny, germie kids running around.  We learned to only eat chips from a fresh bag, to oversee food prep and to be the first in the buffet line (no seconds due to cross contamination).    It works for us.  

I also know that people like to eat.  To offset that, I invite friends coffee and a walk.  We plan outings that make sense for everyone to bring a sack lunch.   You can work outside of the box.  

Soon, you will feel normal.  Avoiding gluten will become habit.  Feel free to use this forum to ask questions.  I am here  because my local celiac group is pretty tiny now.  People are busy and online support can be just as helpful.  

Hang in there!  

 

[elf41980]

4 hours ago, cyclinglady said:

I want to add, that @elf41980,  you are just four months into being gluten free.  It takes time to heal.  So frustrating, I know (as most of the form members can attest).  My diagnosing GI told me my biopsy results and then said that I had lots of gluten-free options as he rattled off a few restaurants.   It was obvious he never tried being gluten free.  

I knew the gluten-free diet well.   Why?  Because my own hubby was advised to trial the gluten-free diet without being tested for celiac disease (two medical doctors!) 19 years ago.  He took their advice and went gluten-free.  He struggled with the diet during that first year.  It was hard!  I learned to cook and bake gluten-free.  While I made Gluten-filled breakfasts and lunches for my daughter and me, our dinners were always gluten-free.  I learned to haul safe food around which was not so difficult because my own mother did the same thing when we traveled.  We picnicked then because we could not afford to eat out and fast food was not readily available back in the days of covered wagons!  ?

I was pretty content with our shared kitchen until my diagnosis 12 years later.  Believe me, I was shocked (my only symptom was anemia).  After my diagnosis, we made the entire house gluten free.  It was just easier.  I needed a safe place to relax in.  Our daughter was old enough to want to help in the kitchen.  It made sense for us.  We all need to find our own way.  I can not stress this enough!  

Our daughter thrived on a gluten-free diet (we all did).  No one needs wheat, barley or rye to survive.  We all know that.  It just happens to be in so many processed foods!  She also had access to gluten while at school or with friends.  

Because we all had some additional food intolerances, eating non-processed foods has been our best approach towards good health.  We have also saved a lot by not eating out (lots of risk).   Yep, no eating out (rarely and only at Dedicated gluten-free restaurants for us).   It saves a ton of money, so that I can purchase the best meats, fruits and veggies and never feel deprived.  We socialize, but we bring our own food or just order a drink.  Family and friends have adapted.  Everyone knows not to bring a pie to my house.  Instead, they bring ice cream, fresh uncut fruit or a bottle of wine.  It works.  

Everyone also washes their hands when they come into the house.  It is a good habit.  

Thinking outside of the box?  @Lynne WWe make tacos or lettuce-wrapped sandwiches instead of gluten-free bread which I do not like but hubby does.    I recall some family members moaning about the lack of hamburger buns at party we hosted.  I showed them how to wrap their hand-made burgers and top them with cheese, avocado, bacon, tomatoes, etc.  I heard them say it was one of the best burgers they ever had.  They also line up every Thanksgiving for a gluten-free dinner.  No complaints ever!  

Now I work from home now.  It is a bit easier to prepare food from scratch.  But I did work away from home at times.    I just spend time planning meals (taking advantage of sales) and doing prep work on the weekends.  My freezer is one of my best friends.  

We visit family and stay for extended periods.  At my parent’s house, I keep a bin of kitchen tools.  They are stored at the bottom of their pantry.  We also stay at my parent’s vacation home that can have multiple families with gluteny, germie kids running around.  We learned to only eat chips from a fresh bag, to oversee food prep and to be the first in the buffet line (no seconds due to cross contamination).    It works for us.  

I also know that people like to eat.  To offset that, I invite friends coffee and a walk.  We plan outings that make sense for everyone to bring a sack lunch.   You can work outside of the box.  

Soon, you will feel normal.  Avoiding gluten will become habit.  Feel free to use this forum to ask questions.  I am here  because my local celiac group is pretty tiny now.  People are busy and online support can be just as helpful.  

Hang in there!  

 

Thank you so much .. 

[RMJ]

The National Celiac Association has some support groups in New Jersey.

https://nationalceliac.org/celiac-disease-support-groups/

[Lynne W]

On 10/16/2019 at 2:59 PM, cyclinglady said:

I want to add, that @elf41980,  you are just four months into being gluten free.  It takes time to heal.  So frustrating, I know (as most of the form members can attest).  My diagnosing GI told me my biopsy results and then said that I had lots of gluten-free options as he rattled off a few restaurants.   It was obvious he never tried being gluten free.  

I knew the gluten-free diet well.   Why?  Because my own hubby was advised to trial the gluten-free diet without being tested for celiac disease (two medical doctors!) 19 years ago.  He took their advice and went gluten-free.  He struggled with the diet during that first year.  It was hard!  I learned to cook and bake gluten-free.  While I made Gluten-filled breakfasts and lunches for my daughter and me, our dinners were always gluten-free.  I learned to haul safe food around which was not so difficult because my own mother did the same thing when we traveled.  We picnicked then because we could not afford to eat out and fast food was not readily available back in the days of covered wagons!  ?

I was pretty content with our shared kitchen until my diagnosis 12 years later.  Believe me, I was shocked (my only symptom was anemia).  After my diagnosis, we made the entire house gluten free.  It was just easier.  I needed a safe place to relax in.  Our daughter was old enough to want to help in the kitchen.  It made sense for us.  We all need to find our own way.  I can not stress this enough!  

Our daughter thrived on a gluten-free diet (we all did).  No one needs wheat, barley or rye to survive.  We all know that.  It just happens to be in so many processed foods!  She also had access to gluten while at school or with friends.  

Because we all had some additional food intolerances, eating non-processed foods has been our best approach towards good health.  We have also saved a lot by not eating out (lots of risk).   Yep, no eating out (rarely and only at Dedicated gluten-free restaurants for us).   It saves a ton of money, so that I can purchase the best meats, fruits and veggies and never feel deprived.  We socialize, but we bring our own food or just order a drink.  Family and friends have adapted.  Everyone knows not to bring a pie to my house.  Instead, they bring ice cream, fresh uncut fruit or a bottle of wine.  It works.  

Everyone also washes their hands when they come into the house.  It is a good habit.  

Thinking outside of the box?  @Lynne WWe make tacos or lettuce-wrapped sandwiches instead of gluten-free bread which I do not like but hubby does.    I recall some family members moaning about the lack of hamburger buns at party we hosted.  I showed them how to wrap their hand-made burgers and top them with cheese, avocado, bacon, tomatoes, etc.  I heard them say it was one of the best burgers they ever had.  They also line up every Thanksgiving for a gluten-free dinner.  No complaints ever!  

Now I work from home now.  It is a bit easier to prepare food from scratch.  But I did work away from home at times.    I just spend time planning meals (taking advantage of sales) and doing prep work on the weekends.  My freezer is one of my best friends.  

We visit family and stay for extended periods.  At my parent’s house, I keep a bin of kitchen tools.  They are stored at the bottom of their pantry.  We also stay at my parent’s vacation home that can have multiple families with gluteny, germie kids running around.  We learned to only eat chips from a fresh bag, to oversee food prep and to be the first in the buffet line (no seconds due to cross contamination).    It works for us.  

I also know that people like to eat.  To offset that, I invite friends coffee and a walk.  We plan outings that make sense for everyone to bring a sack lunch.   You can work outside of the box.  

Soon, you will feel normal.  Avoiding gluten will become habit.  Feel free to use this forum to ask questions.  I am here  because my local celiac group is pretty tiny now.  People are busy and online support can be just as helpful.  

Hang in there!  

 

Thank you for your very kind and informative response. Bless you.