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Hidden Dangers?

concernedmamma

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concernedmamma Explorer
concernedmamma
Posted

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
Roda
Posted

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
mommida
Posted

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
viviendoparajesus
Posted

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
Skylark
Posted

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
climbmtwhitney
Posted

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

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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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