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

Newbie From New Jersey


Fritzer

Recommended Posts

Fritzer Newbie

Hello, everyone! I was diagnosed with Celiac's disease in 2004. I spent a lot of money and effort to eliminate gluten from my diet, couldn't understand how an "allergy" could suddenly wreak havoc in my life out of nowhere. Gluten-free foods weren't readily available except for Whole Foods, Trader Joe's, a small section of an aisle in ShopRite and they were very expensive. On top of everything, I still suffered from the symptoms that sent me to the doctor in the first place.

I became frustrated and decided that I would continue to eat the foods I loved and prayed that my body would develop an immunity to this allergy once again, just like my allergy to cats comes and goes. My symptoms actually did go away for a long time, and would resurface every now and again, usually associated with an increase of Synthroid dosage. I also have hypothyroidism.

Lately the symptoms are back with a vengance and I decided to cut out gluten once again, did so for a week, then had a slice of pizza and paid the price. So here I am, back to the basics. I can't find the website that lists all the gluten-free products and medications. I do see one in "the mall" that's quite pricey. Also, I was quite shocked to read a Dec '07 article that Celiac's Disease is not the allergy to gluten we were always told, but an autoimmune disorder.

Anyone here from the Essex County area that knows the best shopping available for me? Restaurants? Meetups?


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



Celiac.com Sponsor (A8-M):



blueeyedmanda Community Regular

If you have a Wegmans near I know there is a few in NJ, they have big gluten free section and they label all of their house brand products gluten free, it looks like a orange circle with a "G" on it.

debmidge Rising Star

Hello, everyone! I was diagnosed with Celiac's disease in 2004. I spent a lot of money and effort to eliminate gluten from my diet, couldn't understand how an "allergy" could suddenly wreak havoc in my life out of nowhere. Gluten-free foods weren't readily available except for Whole Foods, Trader Joe's, a small section of an aisle in ShopRite and they were very expensive. On top of everything, I still suffered from the symptoms that sent me to the doctor in the first place.

I became frustrated and decided that I would continue to eat the foods I loved and prayed that my body would develop an immunity to this allergy once again, just like my allergy to cats comes and goes. My symptoms actually did go away for a long time, and would resurface every now and again, usually associated with an increase of Synthroid dosage. I also have hypothyroidism.

Lately the symptoms are back with a vengance and I decided to cut out gluten once again, did so for a week, then had a slice of pizza and paid the price. So here I am, back to the basics. I can't find the website that lists all the gluten-free products and medications. I do see one in "the mall" that's quite pricey. Also, I was quite shocked to read a Dec '07 article that Celiac's Disease is not the allergy to gluten we were always told, but an autoimmune disorder.

Anyone here from the Essex County area that knows the best shopping available for me? Restaurants? Meetups?

We are in Union Twp Union County; where are you in Essex County? I don't know of any Wegman's other than Woodbridge and near Princeton, NJ. The further you go out of the "City/Urban" area like Essex County, the more likely you are to get a bigger variety of gluten free food. I do a lot of my shopping over internet and yes, it's pricey & shipping fee and the whole idea of mail order stinks.

As to restaurants: Outback and Charlie Brown's have gluten free menus. There is a thread for a gluten-free pizzeria in North Jersey, then there's Aliperti's in Clark, NJ (Italian food).

D.

Fritzer Newbie

Thank you, Deb. I'm in Nutley and no, never heard of Wegman's. Just made a trip down the "special" aisle at Shoprite today. Could not find one gluten-free cereal. I LOVE brownies big time, but I just wasn't prepared to spend 6 bucks for the mix. The Blue Diamond ranch crackers are wonderful, but so few for so much $$.

Have you ever been to the Gluten Free Market? There's a meetup group in Jersey City and I saw one of their recent "events" was a shopping trip there.

My husband is very supportive of this issue and when I first was diagnosed we drove all over the place looking for products and stores. I think the best thing for me is to remain on as simple a diet as I can until I'm more educated on ingredients that are actually containing or made from wheat. Would you happen to have a list you could send me?

Robin

blueeyedmanda Community Regular

Hi Robin,

I am not in NJ, so I wont be so much help, sorry. I shop at Shop Rite when we come down to Wildwood in the summer, at that store the gluten-free items are mixed right in with regular products, but there is a small yellow or orange sign underneath the shelf where the price tag was.

I know $6 is nuts for a mix! I have to tell you I do buy a mix that price, but I love it! Its called the Gluten Free Pantry Truffle Brownie mix. I am having a hard time locating it so I usually buy it online, but it is very good and tastes like regular brownies, my coworkers love it.

happygirl Collaborator

If you have Celiac, you are right-it is an autoimmune disorder.

Here are some websites that I would recommend reading, to help understand more about Celiac.

www.celiacdiseasecenter.columbia.edu

www.celiaccentral.org

www.celiac.org

To make life a little easier when food shopping, here is a list of "bad" ingredients. https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html The good news is that on a daily basis, you won't often see a lot of those ingredients (unless you are looking at obvious gluten products....breads, pastas, pastries, etc.)

Here is a list of companies that won't hide any gluten in the ingredients. If you don't see wheat, rye, barley, malt, or oats clearly listed, then you don't have to worry that its in there "somewhere." It helps so that you don't have to worry about food starches, colorings, flavorings, etc. Open Original Shared Link

Wheat is required by law to be listed.

Let us know what else we can do to help.

Fritzer Newbie

(Oh, rest assured I WILL be paying 6 bucks for brownies once a month!)

Thank you so much for posting these links! This is all very troubling to me. I meet with my doc Tues and will discuss further with her on testing, etc. What is confusing to me is I never had any problems until I was 39. I was told I had an allergy to gluten in 2004. After a while, my symptoms went away, I figured the allergy went away as suddenly as it came and I enjoyed eating what I was formerly banned from. Now this is back and I read that it's not an allergy after all. Why didn't I have the symptoms for nearly three years after being "diagnosed"?

Thanks again for posting. I'll be studying and printing tomorrow morning!


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Having Celiac doesn't mean having symptoms necessarily. It used to be thought that Celiac presented with very clear symptoms. They know think that many people with Celiac are "silent" meaning that damage is still occurring abut symptoms are mild or non-existent. The site I posted earlier from Columbia talks about it some, also.

Ask your doctor how it was determined you had Celiac. If it was blood tests, get a copy of the tests. Some tests are more specific than others. Its important to have a copy of your records, esp important ones like this. Did you have an endoscopy and biopsy?

If you have Celiac, you have it for good, regardless of symptoms. Celiac can be triggered at any time....from a tiny baby to an elderly person.

blueeyedmanda Community Regular

For me it was triggered when I was about 20. I was officially diagnosed when I was 22.

It gets easier though, even if it seems like you will never get a grasp on it. This board has been a lifesaver for me, the members on here have so much to share, we have some very talented bakers who can change normal recipes to gluten-free ones. We have members who travel and comment back on their dining experiences. It is just amazing.

debmidge Rising Star
Hi Robin,

I am not in NJ, so I wont be so much help, sorry. I shop at Shop Rite when we come down to Wildwood in the summer, at that store the gluten-free items are mixed right in with regular products, but there is a small yellow or orange sign underneath the shelf where the price tag was.

I know $6 is nuts for a mix! I have to tell you I do buy a mix that price, but I love it! Its called the Gluten Free Pantry Truffle Brownie mix. I am having a hard time locating it so I usually buy it online, but it is very good and tastes like regular brownies, my coworkers love it.

In our section of NJ, the supermarkets are not quite up to the task of supplying us with gluten-free products. They claim to have an aisle of gluten-free products but it's not the entire aisle and the items are usually past their expiration date. I had this happen in a Shop Rite by the way. The further into the west and southern parts of the state is where you'll find better stores and for us and that could be a hour's drive away. I rely on Whole Foods and internet purchasing of staples. Wegman's is about a 40 min. drive for me and the next Wegman's is over an hour away. Land is so expensive up here that stores aren't about to build new unless they can be guaranteed large sales (feasibility studies)..I guess those studies are showing that it's not a good business decision for them. The Whole Foods in West Orange is supposed to be a good store (better than Millburn I hear). This is where you should shop Fritzer (West Orange Whole Foods). We go to the Millburn store as again, the West Orange store is a 40 minute trip for us. My feeling is that the closer to the inner city you are, the less choices you have here in NJ. It's probably that the demographics show that the suburbs are where the celiacs are at.

Fritzer Newbie
Having Celiac doesn't mean having symptoms necessarily. It used to be thought that Celiac presented with very clear symptoms. They know think that many people with Celiac are "silent" meaning that damage is still occurring abut symptoms are mild or non-existent. The site I posted earlier from Columbia talks about it some, also.

Ask your doctor how it was determined you had Celiac. If it was blood tests, get a copy of the tests. Some tests are more specific than others. Its important to have a copy of your records, esp important ones like this. Did you have an endoscopy and biopsy?

If you have Celiac, you have it for good, regardless of symptoms. Celiac can be triggered at any time....from a tiny baby to an elderly person.

It was by blood test and I don't have the records. I did have a colonoscopy, a polyp removed, and he eventually told me that the earlier blood tests indicated a gluten allergy. I have my regular doc tomorrow and will take it from there and perhaps she can request the records. I think I'll be going through the process all over again.

I have to say that I'm not in pain and painful bloating, I'm still experiencing the waterworks, though.

  • 2 weeks later...
edgeyveggie Newbie

Hang in there, it's important for you health.

  • 1 month later...
lpellegr Collaborator

You can get along without expensive gluten-free specialty foods if you stop trying to substitute gluten-free products for similar "normal" ones. Instead of replacing your normal sandwich bread, just eat the sandwich filling without any bread. Roll up the ham and cheese with a piece of lettuce. Scoop the tuna salad up with carrot sticks or celery. Spread the peanut butter on apples. Instead of pasta, put your tomato sauce on spaghetti squash or zucchini, or rice or polenta. Instead of breakfast cereal or toast or bagel have eggs or a bowl of plain yogurt with nuts and fruit or even leftovers from last night's dinner. I have made mini pizzas from hash-brown patties topped with sauce and cheese and my kids begged to share it. You can find fruit, veggies, meat, cheese, and eggs at any store. It takes a while to make the change, but some day you'll look back and not even have any interest in things you used to eat, and it will cost less. Yes, make the $6 brownies, but eat a few and put the rest in the freezer for later. Keep a box of Nut Thins crackers on hand, but don't eat them every day. In the long run you will eat healthier and safer and cheaper. Sorry to sound preachy, but man, that stuff is expensive and low in nutrition anyway.

  • 3 weeks later...
BuggysMommy Newbie

Hi! I am new to this whole gluten-free thing too, but I did find something you were talking about... The Gluten Free Market you mentioned I found on this website Open Original Shared Link and it says it's in Fairlawn (not super close to Nutley but doable). I am in Essex County too, by the way, about 5 minutes from Willowbrook Mall. That list of gluten-free stores is okay, but it leaves off any Trader Joe's or Whole Foods I'm sure you know about anyway.

And I am right there with you about Shoprite, mine has a dedicated 4 feet of shelving for gluten-free foods, none of which I've been brave enough to try yet... Anyway, If I find anything in our area that you might find interesting, I'll be sure to let you know!

Buggy's Mommy

debmidge Rising Star
Hi! I am new to this whole gluten-free thing too, but I did find something you were talking about... The Gluten Free Market you mentioned I found on this website Open Original Shared Link and it says it's in Fairlawn (not super close to Nutley but doable). I am in Essex County too, by the way, about 5 minutes from Willowbrook Mall. That list of gluten-free stores is okay, but it leaves off any Trader Joe's or Whole Foods I'm sure you know about anyway.

And I am right there with you about Shoprite, mine has a dedicated 4 feet of shelving for gluten-free foods, none of which I've been brave enough to try yet... Anyway, If I find anything in our area that you might find interesting, I'll be sure to let you know!

Buggy's Mommy

The Trader Joe's in Westfield is a waste of time. It is not stocked with the same gluten free foods as the other Trader Joe's in other areas of state/country. Even the Whole Foods in Millburn doesn't stock the same gluten free foods as their store in West Orange. You might want to try the Whole Foods West Orange store then.

Our local A&P was starting to carry gluten free in 2006 but then some stupid-head (and I don't use this term lightly) re-designed the store's layout (the idiot put low illumination track lighting - like you'd have a a bar/restaurant -- over the Produce area and it's not enough lighting to examine what you are buying!) and decided to get rid of the foods which are predominately gluten free (Like Gorilla Munch cereal, Gluten Free Pantry, etc.). This annoyed me because in late 2005 I wrote A&P a letter to thank them for bringing in these specialty gluten free foods (got no response).

Archived

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

  • 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. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    3. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,340
    • Most Online (within 30 mins)
      7,748

    Abbyyoung417
    Newest Member
    Abbyyoung417
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
×
×
  • 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.