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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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    • trents
      Bob red mill gluten free oats

      By trents · Posted

      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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      By trents · Posted

      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
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      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
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      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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