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Hidden Dangers?


concernedmamma

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concernedmamma Explorer

I hope it is ok that I have cross posted this from the Parent's of Kids with Celiac forum. Wondering if you have any more input? Thanks so much!

Hi Everyone! I think that we are learning exactly HOW sensitive our son is to the smallest traces of Gluten...... seems whenever we eat outside our home (even at other houses) he has a reaction. I honestly think that now that we are over a year into this diet, he is MORE sensitive than ever before. I am fine with this, but am having a hard time figuring out where the traces are coming from.

I KNOW that the best thing would be to eliminate all pre-packaged foods, etc. However, the thought is so overwhelming!

SO, what I am 'really' looking for, is what 'gluten free' foods have you found to be not-so-gluten free. I mean either foods that are labeled as gluten free, or ones you would expect to be gluten free from reading ingredient lists.....

One I thought of before, but just recently saw it on here was Cheetos. Pretty sure he can't stand Gluten free oats. I tried the Schneider's Country Naturals' Hotdogs, but not so sure!

He 'seems' ok with most Glutino products, Kinnickinnick, Rice thinks crackers. Pretty sure Milk products aren't a problem........... Looking for the sneeky ones.

Any experiences? I know everyone is different, but maybe something will help!

Kim, Mommy to 4 fantastic kids!!!


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Roda Rising Star

If he is sensitive to gluten free oats, be causious with Bob's Red Mill gluten free products. I found to be very intolerent to gluten free oats after I tried them when I was 7 months gluten free. However, I almost exclusively used BRM products from day one. I started having symptoms last Jan. and didn't make the connection until August, when I was facing having to be on steriods. I dumped any processed gluten free things and that's when the connection hit. I never thought about the potential oat contamination that whole time. I also had to give up some main stream products also. I ate some baked goods this Jan. with BRM ingredients and bam, my symptoms I had for those 8 months came back and it took about 1.5 weeks to get back to normal. I used to tolerate cool ranch doritos and other lays products, but I can not eat those any longer either. I do alright with the stax though.

mommida Enthusiast

Keep a food journal. One year into the diet there can be a cross-contaminated ingredient causing problems. (bottle of vanilla was a problem for us) There is gut damage that needs to heal. Certain things are just harder for the body to digest. (egg protin, and corn ~ not that there is any allergy or intolerance going on with the individual just some things are harder on a damaged gut.

Follow up with the ped gastro. My daughter started having the same Celiac symptoms start up after being gluten free about 5 years. She was diagnosed with Eosinophilic Esophagitus when she was 6 years old. There is quite an extensive list of disorders of Celiac symptoms, some of which are more likely a connection to Celiac.

viviendoparajesus Apprentice

Could be other foods. My doctor said not to have soy, but I do not know why just that gluten intolerance = no soy. My doctor and some internet sources say careful with other grains and corn because there is not enough information to know if they are safe for gluten intolerant folks. There is also cross reactivity. Cyrex Labs does a test for it. I react to yeast and buckwheat. Casein intolerance often occurs with gluten intolerance. Maybe just temporarily go off processed pre-packaged foods and try one food at a time every few days and see what happens. Can also have tests done to see what intolerances he has? Can also look at allergy testing? I have lots of allergies probably because food is still leaking out and not fully digested since I am still in the healing process. not to be offensive but sometimes the cross contamination warnings are small and hidden on the package so not sure if that is an issue for you all. sometimes ingredients change so we gotta keep checking labels and calling companies. i love enjoy life products they are free of many common allergens and i like the taste. i am not a fan of bob's red mills product. they are processed in a facility that has soy. i thought they did some gluten products too, so i was afraid of cross contamination. best wishes!

Skylark Collaborator

Amy's has been a problem brand for some, especially their pizza. I don't trust Food For Life either, as they have had undeclared gluten in their foods a couple times.

climbmtwhitney Apprentice

Amy's & Rice Dream rice milk got us. :(

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    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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