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I'm So Confused!


shacon-bacon

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shacon-bacon Apprentice

Hello everyone, I am new to this! I was just diagnosed w/ celiac and I'm sooo confused! I keep reading conflicting things about whats safe vs. unsafe. Things like mayo, vinegar, pickles, mustard, french fries, tortilla chips?

I just don't know...Also, it looks like this cross contamination thing is a pretty big deal I guess huh? I hadn't really considered all that. It's just me and a 5 year old girl who doesn't eat anything (just about!) except chicken nuggets, grilled cheese sandwiches, pb&j's and fruit. I guess I need to be pretty careful about the cross contamination huh?

Everyone has been coming at me with conflicting info. Some people say its ok to sneak a chip here and there, and then others say you shouldn't eat a salad that has even touched a roll? I just don't know...

Any and all advice would be welcome and very much appreciated. Thank you!


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happygirl Collaborator

Welcome to the board!

The best way to know if something is safe is to learn how to effectively read labels.

Here are not safe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Here are safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

Here is a list of companies that will clearly list all gluten sources. If you don't see wheat/rye/barley/barley malt/oats, then it isn't "hidden." Open Original Shared Link

Take these lists with you when shopping :)

Vinegar is safe unless its malt vinegar, or occasionally, flavored vinegars. But "vinegar" "apple cider vinegar" "distilled vinegar" etc. are gluten free. https://www.celiac.com/articles/184/1/Ameri...Diet/Page1.html

Wheat must clearly be listed due to new food allergen labeling laws: Open Original Shared Link

If you were diagnosed with Celiac, you need to be 100% gluten free, which includes knowing what is in the ingredients and food preparation (i.e., cross contamination). No sneaking, cheating, etc.

"There is currently no treatment for celiac disease apart from a strict, lifelong gluten-free diet." and "However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis. " Open Original Shared Link

Best of luck, and I hope this helps get you started.

YoloGx Rookie
Welcome to the board!

The best way to know if something is safe is to learn how to effectively read labels.

Here are not safe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Here are safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

Here is a list of companies that will clearly list all gluten sources. If you don't see wheat/rye/barley/barley malt/oats, then it isn't "hidden." Open Original Shared Link

Take these lists with you when shopping :)

Vinegar is safe unless its malt vinegar, or occasionally, flavored vinegars. But "vinegar" "apple cider vinegar" "distilled vinegar" etc. are gluten free. https://www.celiac.com/articles/184/1/Ameri...Diet/Page1.html

Wheat must clearly be listed due to new food allergen labeling laws: Open Original Shared Link

If you were diagnosed with Celiac, you need to be 100% gluten free, which includes knowing what is in the ingredients and food preparation (i.e., cross contamination). No sneaking, cheating, etc.

"There is currently no treatment for celiac disease apart from a strict, lifelong gluten-free diet." and "However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis. " Open Original Shared Link

Best of luck, and I hope this helps get you started.

Now I am confused. I thought distilled white vinegar was made from wheat. I have found I don't tolerate it but can tolerate pure apple cider vinegar. Same with whiskey--I got CC'd just from kissing my boyfriend who had been drinking whiskey. I also understand that the grain alcohol used in tinctures makes herbal tinctures unwise to use.

So what is really what here?

kbtoyssni Contributor
Now I am confused. I thought distilled white vinegar was made from wheat. I have found I don't tolerate it but can tolerate pure apple cider vinegar. Same with whiskey--I got CC'd just from kissing my boyfriend who had been drinking whiskey. I also understand that the grain alcohol used in tinctures makes herbal tinctures unwise to use.

Most whiskeys have malt added in at the end, so they're definitely not gluten-free. Vinegar - even that made from gluten grains - is generally considered safe since the gluten is removed in the distilling process. Seems that some very sensitive celiacs may react to it, though.

OP - yes CC is a huge issue. One crumb of gluten is enough to make a celiac sick which is why you can't eat a salad that's had a roll on top. As for sneaking a chip here and there - some celiacs do, usually those who don't get very sick or have noticeable symptoms. That doesn't mean you're not doing damage, though! And the occasional cheat will set you up for life long health problems.

As for your safe vs unsafe list of mayo, pickles, french fries, etc, it depends on the brand. Most Ore Ida fries are gluten-free except the seasoned ones. Most restaurant fries are cooked in the same oil as breaded products so they're a no. Heniz ketchup is ok, French's mustard, Vlasic (and Milwaukee's - they're owns by Vlasic) pickles. Kraft labels gluten in their products so if it doesn't say gluten on the label it's safe.

shacon-bacon Apprentice

Thank you so much for the good info! So, another thing I was wondering, you say Kraft labels theirs w/ gluten, so are most salad dressings ok??

I appreciate all the help I can get.

Ivanna44 Apprentice
Hello everyone, I am new to this! I was just diagnosed w/ celiac and I'm sooo confused! I keep reading conflicting things about whats safe vs. unsafe. Things like mayo, vinegar, pickles, mustard, french fries, tortilla chips?

I just don't know...Also, it looks like this cross contamination thing is a pretty big deal I guess huh? I hadn't really considered all that. It's just me and a 5 year old girl who doesn't eat anything (just about!) except chicken nuggets, grilled cheese sandwiches, pb&j's and fruit. I guess I need to be pretty careful about the cross contamination huh?

Everyone has been coming at me with conflicting info. Some people say its ok to sneak a chip here and there, and then others say you shouldn't eat a salad that has even touched a roll? I just don't know...

Any and all advice would be welcome and very much appreciated. Thank you!

Hi shacon_bacon,

Welcome to the forums. :) You are at the right place.

Is you daughter also exhibiting signs of gluten sensitivities. It can be really hard, which I'm sure some members will agree, when you are the only one in the house with it. Just make sure you do little things like "wash" your hands, if you prepared something for your daughter (gluten lurks in a lot of places) so to speak :)

Use the web links the others recommended, I also recommend this book at this link, it's written by a dietician has tons for what is safe/not, as well as recipes and who sells what under what label as " gluten-free " Open Original Shared Link

Yes it is confusing and very overhelming. But, you will get there. You've been eating gluten a long time. Its going to take a month or so, before you know you are completely gluten free. Usually feeling better is the first step.

hugs (you'll make it through :) it just takes practice)

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    • trents
      @cristiana, I'm thinking the intensity of our response to the same amount of gluten can vary from time to time. Our bodies are a dynamic entity. 
    • Scott Adams
      I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!
    • cristiana
      Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  
    • trents
      It might be wise to start him on small amounts and work up to 10g. Monitor how he reacts. Some people simply cannot complete the gluten challenge because it makes them too ill. By the way, you can buy powdered gluten in health food stores, at least here in the states you can. With a food scale, it would be easy to measure the amount being consumed in a day. I'm not sure what the intensity of reaction to gluten tells you about what's actually going on with regard to celiac disease. I mean there are some celiacs like me who don't seem to react to minor exposure amounts but who get violently ill with larger exposures. Then there are celiacs who get some kind of reaction to even the tiniest amount of exposure but don't necessarily get violently ill. And how the reaction manifests itself is very different for different people. Some, like me, experience emesis and diarrhea. Others just get brain fog. Others get joint pain. It's all over the map.
    • melthebell
      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
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