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Fritzer

Newbie From New Jersey

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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?

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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.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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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.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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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

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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.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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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. http://www.glutenfreeindy.com/foodlists/in...donothidegluten

Wheat is required by law to be listed.

Let us know what else we can do to help.

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(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!

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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.

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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.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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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.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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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.

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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.


Lee

I never liked bread anyway.....

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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 http://www.gfnfoods.com/where_to_find.asp 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

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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 http://www.gfnfoods.com/where_to_find.asp 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).


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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