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allergiescooked

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greenbeanie Enthusiast

I would love to see more gluten-free products (especially breads, flour mixes, and pizza crusts) without xanthan gum. I bake at home with guar gum all the time and it comes out perfectly fine, but so many commercial gluten-free flour mixes and baked goods use xanthan gum instead. My daughter is fine with it, fortunately, but it makes my mouth burn and my tongue sting. From what I've read on here, this seems to be a fairly common intolerance, so it seems like there would be a market more more gluten-free products that were also free of xanthan gum - like brownie mixes made with guar gum instead, etc. Or just a plain gluten-free flour mix with no binder added!

Also, I second the point about very limited restaurant options for kids. We almost never eat at restaurants, but even the one local restaurant that we trust (which is GIG trained) has good safe options for adults but nothing that's likely to be appealing to kids. It would be so wonderful to eat out as a family just once or twice a year, with food that everyone likes and no worries about cc.


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  • Replies 61
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mbrookes Community Regular

I would love a good French Bread. Never again eating a shrimp Po'boy is a terrible thing. Against the Grain makes a baguette, but the diameter is too small and it is so full of holes that the sandwich fixings would fall through.

 

A phyllo-type dough would be wonderful. So many sweet and savory options with phyllo! 

 

I have found that the more up-scale restaurants are more knowledgeable and able to produce "safe" food. Last week on a trip to New Orleans I ate like a queen with no bad results. This included one restaurant that made a special appetizer for me (poached oysters over garlicky sauted spinach) and another that brought me three bowls for dessert: strawberries with thick heavy cream and powdered sugar for dipping.

 

Thanks for your interest and desire to make life better for us poor Celiacs.

LauraTX Rising Star

 

I have found that the more up-scale restaurants are more knowledgeable and able to produce "safe" food. Last week on a trip to New Orleans I ate like a queen with no bad results. This included one restaurant that made a special appetizer for me (poached oysters over garlicky sauted spinach) and another that brought me three bowls for dessert: strawberries with thick heavy cream and powdered sugar for dipping.

 

So, can you make a New Orleans eatin' post for us that may go there?  I want to go to those places!!! :)

SMRI Collaborator

We were going to go last time I was up to Mayo, but we had problems with our GPS taking us all over town before we even got to the clinic ( was my boyfriends first time in the area) and we were both very frustrated, decided to just come home. I told Jeremy we should go some day when it isn't the middle of the day since it is so close to the hub-bub that is the Mayo clinic, and things are crazy. It's about an hour and a half drive for us. There menu looks awesome, a little pricey, but I've only went out to eat once in the last nine months. Would be nice to have someone cook for me once in a while lol.

 

It's about 6 blocks or so from the clinic---easy walk if the weather works.  I thought the prices were very reasonable, especially for gluten-free food.  I think our dinner bills were in the $35 range (2 people).  I'll be eating there tonight, and probably tomorrow night too :D

SMRI Collaborator

Dinner for 2, gluten free bread to start (grilled and garlic and cheese I think).  They have a unique hot stone cooking stone and I had that with steak, daughter had pistachio crusted tuna.  She said it was the best thing ever.  Shared some gluten-free cheesecake for dessert...YUM!!!  $42 plus tip :D.

africanqueen99 Contributor

I agree about the "free bread" that they bring to the table.  We never get it since we have 2/5 of us with celiac.  We've only been to one place that had gluten-free rolls brought to us all warm and delicious - Maggiano's.  My kids *really* miss stuff like that.

 

We tend to eat family style while out and about.  The whole table gets gluten-free food and we mix and match our plates.  My kids would rather eat "real" food over the kid menu options; plus kid menu isn't enough food or safe for my kids.

 

In my perfect world I would seriously love to see more restaurants with dedicated fryers.  I've never worked in a restaurant so I'm unsure if it's a space or a money issue, but it makes a huge difference in my world.

 

And all restaurants should do little things to keep all staff/guests on the same page.  You know how some use different colored plates or different shaped pasta?  It's so basic, but it keeps my mind sharp knowing my kids are safe.

Nikki2777 Community Regular

Biggest thing for me is feeling confident that the kitchen and waitstaff truly understand cross-contamination and prevent it.  I don't mind ordering non-gluten containing items, but I'd like to not have fear with every meal.  Maybe this can be done with menu wording, or evidence of training (GIG?) posted in the window or on the menu.

 

Also, somehow call out any items or marinades that use soy sauce, since it's a MAJOR hidden source of gluten in the restaurants my family goes to.  Especially on steak.


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Nikki2777 Community Regular

Oh, and favorite breads are canyon bakehouse rye like bread and schar deli style.  The things I miss most are madeleines to dunk in my coffee and a really good, flaky croissant.  Well, those are the food items I miss most. 

 

What I really miss most is spontenaity (sp?) and feeling safe when I eat out.  And not having to explain myself to the waitstaff.

1desperateladysaved Proficient

My big concern is other allergies.  I don't have any bread like thing left.  I have been recently making some yummy wraps with coconut flour and eggs.  The hardest thing for me is having to call up companies and needing to opt our or take some risk.  I can't always decide if it is okay if the factory has some chocolate in it.

CK1901 Explorer

TBH, the waitstaff and shift-to-shift line cooks are generally my biggest frustration. I've been to some really great restaurants with awesome menus and still had a bad experience due to servers and the fact that there could be a different cook depending on the day.

 

For example, I was in Spain last June with my boyfriend. We found this great restaurant run by a guy who was very well-versed in celiac disease (due to his own child having it.) Everything was great quality-wise. The second time we went in, the owner wasn't around. The server was really rude and didn't seem to understand the concept all that well. Even though I made it known that I was gluten free, he still brought our mousse with a cookie stuck in it. It made me wonder if he even told the chef about my needs. When I told him no, he tried to pull the cookie stick out of the mousse with his hands. It really ruined the meal and it had nothing to do with the owner or the chef (other than maybe bad training.) I think enforcing consistency with ALL of the staff is the most important thing. In an ideal world, a server is knowledgeable but not overbearing about it and maintains a neutrel opinion on a customer's dietary needs.

 

Other than that, I really don't like going to restaurants that tout a gluten free menu, but don't have a dedicated space for preparation. Having worked in a restaurant when I was younger, I don't think it's fair to expect cooks to be really diligent about cross contamination when they aren't given the right tools to do so. When it gets busy, I don't expect that they can really keep up with it in a realistic way.

 

As far as food suggestions - it's never great going to some place with a gluten free menu that essentially tells you to omit all the sauces.  Gluten free sauces are a game changer. Also, I prefer not to see dip at all on the menu if gluten free bread or crackers aren't being served (veggies just don't cut it with crab dip.) Of course, gluten free doesn't equate to vegan, so I don't need a million vegan options just because I'm celiac.

I would  honestly just die if I could find a place that serves gluten free deep fried foods (chicken, french fries, calamari, etc.) I know it's not healthy or classy or whatever, but it's the thing I miss out on the most when eating in restaurants. Everyone else gets french fries with their sandwich and I get broccoli.

 

ALSO - just an edit here - I really would love to see more restaurants including a gluten free item on their daily/weekly specials. i get so bummed out going to the same places all the time and ordering the same thing. Meanwhile, the specials menu changes all the time.

sunny2012 Rookie

My biggest frustration is restaurants that have a caveat at the bottom of the menu, "We can not be held responsible for 'normal' cross contamination that occurs during the preparation of foods in the kitchen".

If raw chicken can be kept from contaminating everything else, so can gluten free. Also, there is no point in claiming that an item is gluten-free and then cross contaminating it with gluten.

 

Then there are places where I speak to the chef, talk to my wait staff, spending inordinate energy to ensure that they understand only to have some other person with whom I have not said a single word place something in front of me without any knowledge of the gluten-free status or my serious need.

 

Lastly, the limited number of items available to eat, I am one who wearies of the same foods OVER and OVER and OVER. There are restaurants we no longer choose because I have eaten the same thing there for 5 years or more, They simply refuse to even attempt to modify an entree by leaving off the breading or not putting on the croutons.

 

NOt sure if this is an issue you even want to discuss.... BUt what is with stores carrying gluten-free items and placing them smack dab in the middle of all the gluten items that leak? I mean corn meal in the middle shelf surrounded by flour. Bags of flour are NOT air tight. That coating of flour gets all over everything surrounding it. Generally, these places will have a seperate dedicated gluten-free item section - BUT they refuse to place the gluten-free corn meal there.

 

Thanks for asking about this. I have been dealing with these issues for many decades. I wish more people in the food industry cared about those of use for whom gluten is a life threatening ingredient. 

sunny2012 Rookie

Ravioli!!!! I'd die for a gluten-free ravioli. (Only kidding....I could actually make them myself except that I have serious muscle, bone and nerve damage from poor understanding of this disease decades ago when I was Finally diagnosed at the brink of death.

sunny2012 Rookie

The other thing is comfort foods when one has a cold or flu. Please explain why the gluten-free chicken soup in the can has to be filled with spices and hot sauces? (because when I am too sick I don't have strength to make it from scratch). I lose nearly 10 pounds anytime that I catch cold.

SMRI Collaborator

Ravioli!!!! I'd die for a gluten-free ravioli. (Only kidding....I could actually make them myself except that I have serious muscle, bone and nerve damage from poor understanding of this disease decades ago when I was Finally diagnosed at the brink of death.

 

I just ate at a restaurant that had gluten free ravioli!!  I really debated about that or the pasta dish I got.  I ended up with the other pasta dish though.  

  • 2 weeks later...
allergiescooked Rookie

Education of staff is critical. I could not agree more on this front.

There are simple things (low cost as well) that food service establishments can do to reduce the risk of cross contact. I know many establishments that have designated sauté pans, cutting boards, etc... The supplier/distributor industry (Ecolab, to name one) has started manufacturing colored coded equipment for major 8 allergen free use. These items are new to the food service industry and (hopefully) becoming as common place as the red/green/white labeling from days past. This is one piece of my bridging the disconnect quest; education. 

squirmingitch Veteran

Fantastic news allergiescooked!

mateo2099 Rookie

Just to second what everyone else has said - I think we all loathe hearing we have to omit sauces or bread or whatever makes the item that item.  I for one, don't believe a burger without bread is a burger.  It's a slab of meat.  Also, if there is a Mexican dish or Mexican styled dish, have options for corn tortillas.  Another big pet peeve is restaurants that advertise a gluten-free selection when in fact its just a salad or simple meat and rice combo or anything else that is naturally and normally gluten free.  Not only is it lazy, it almost seems like false advertisement.  This might be a point of contention for a lot of others with other allergies, but not all of us have egg, nut, dairy allergies, etc.  It would be nice to have a mixture of available ingredients, especially in baked goods.  Lastly, desert and breakfast are a large black hole for us gluten-free folks.  Desert options are almost always limited to cupcakes or some type of flourless fudge/Ice-cream combo (blech!), and that's if we are lucky.  And I would kill for gluten-free pancakes, biscuits and gravy, waffles like a regular person. 

squirmingitch Veteran

Dear allergiescooked, I tried the America's Test Kitchen biscuit recipe today. OMG! Freakingfantabulous!!!!!!!!!!!!!!!!!!!!!!!!!!!!! They nailed it! For the first time in over 3 years I had a biscuit that was a biscuit! Real, honest to goodness, walking, talking, living, breathing, home made biscuits! They are sheer perfection. If a gluten eater ate one of these biscuits I guarantee they would never know these didn't have any wheat flour in them. I simply can't believe it. I'm still in shock. My husband is still in shock. And they're easy too.

 

mateo2099, Get America's Test Kitchen "The How Can It Be Gluten Free Cookbook". You'll have to make them yourself but you can have REAL biscuits & gravy! And pancakes, and dinner rolls and bread, & pie crust and on & on. 

 

The cookbook is worth it's weight in gold!

GF Lover Rising Star

Dear allergiescooked, I tried the America's Test Kitchen biscuit recipe today. OMG! Freakingfantabulous!!!!!!!!!!!!!!!!!!!!!!!!!!!!! They nailed it! For the first time in over 3 years I had a biscuit that was a biscuit! Real, honest to goodness, walking, talking, living, breathing, home made biscuits! They are sheer perfection. If a gluten eater ate one of these biscuits I guarantee they would never know these didn't have any wheat flour in them. I simply can't believe it. I'm still in shock. My husband is still in shock. And they're easy too.

 

mateo2099, Get America's Test Kitchen "The How Can It Be Gluten Free Cookbook". You'll have to make them yourself but you can have REAL biscuits & gravy! And pancakes, and dinner rolls and bread, & pie crust and on & on. 

 

The cookbook is worth it's weight in gold!

Hey Squirmy,

 

Glad you got that cookbook.  Seriously awesome food !!!!!!   Wait till you make the coffee cake  :D .  And the Breads  :D  :D  :D .  And, and, and,....lol

 

Colleen

squirmingitch Veteran

I know Colleen! The list goes on & on!  :D  :D  :D Oh yeh, coffee cake ~~~ I used to make one that had dried apricots & raisins in it ~~ I'm going to throw some in this one. I'm really stoked now & can't wait to try SO many of the recipes. Cinnamon raisin bread, pie crust, cheese bread & more! Wooooooooooo Hoooooooooooo!!!!!!!!!! Let the baking continue! :lol:  :lol:  :lol:  :lol:  :lol:

mateo2099 Rookie

I'll have to get that cookbook.  I've actually just recently started baking my own biscuits and have finally gotten a really decent mix.  I use Pioneer brand country gravy instead of mixing it myself but its not bad at all.  As for pancakes and french toast and waffles and the like, I mastered those long ago lol.  But sometimes I am lazy and would love to just hit a local restaurant or gasp...God, forbid, a restaurant chain and have a real authentic gluten-free breakfast.  I'm looking at you Cracker Barrel!  

allergiescooked Rookie

Dear allergiescooked, I tried the America's Test Kitchen biscuit recipe today. OMG! Freakingfantabulous!!!!!!!!!!!!!!!!!!!!!!!!!!!!! They nailed it! For the first time in over 3 years I had a biscuit that was a biscuit! Real, honest to goodness, walking, talking, living, breathing, home made biscuits! They are sheer perfection. If a gluten eater ate one of these biscuits I guarantee they would never know these didn't have any wheat flour in them. I simply can't believe it. I'm still in shock. My husband is still in shock. And they're easy too.

 

mateo2099, Get America's Test Kitchen "The How Can It Be Gluten Free Cookbook". You'll have to make them yourself but you can have REAL biscuits & gravy! And pancakes, and dinner rolls and bread, & pie crust and on & on. 

 

The cookbook is worth it's weight in gold!

That's AWESOME! I'll have to check that out! I'm in the process of teaming up with my dietician buddy Dan. We're putting something together for testing...more to come.

squirmingitch Veteran

Super! We'll be waiting......

Googles Community Regular

Hi,

I just saw this thread. I have a number of issues. 

1) Trust: Being able to trust the restaurant that I want to eat at. That they aren't going to make me sick because they are doing stupid things. The one that blew me the way the most and has kept me from eating anything at their restaurant was when I went and they had their french fries on their gluten free menu (yay for me as I hadn't had french fries except ones I made in over 2 years) and when I was asking questions about them they said that while they had a dedicated gluten free fryer, when things got busy they would just throw everything in whatever fryer. But yet they had their french fries on their gluten free menu. 

 

2) Dessert. I want a yummy satisfying dessert that isn't ice cream. I love ice cream, but when everyone else can have cake and cookies and other nummy looking and smelling desserts and I'm left with ice cream, it makes me sad. 

 

3) Cinnamon rolls!!!! I have not had any good fluffy cinnamon rolls, I've tried Udi's and they just don't cut it though I love their muffins.. (I have cravings for Cinnabon cinnamon rolls). Everything is so dense across the board when it comes to baked goods. 

 

4) Being taken seriously.By wait staff and friends and the public in general. That we aren't asking questions to be obnoxious. That it isn't something to joke about. I want to be able to go out with my friends to eat and not have them feel uncomfortable because I can't eat with them. 

  • 2 weeks later...
allergiescooked Rookie

The samples are rolling in from some of the gluten-free vendors. I also reached out to America's Test Kitchen...more to come on that but all very exciting!

 

Has anyone checked out this website...they have many "warnings" in relation to their content but any thoughts on it...

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    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
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      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
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      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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