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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
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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