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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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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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