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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

"gluten Free" Items That "got You"
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103 posts in this topic

I KNOW I've been glutened by so called gluten-free items. I am a pretty sensitive celiac and a very careful one. When I am at home and get sick I can usually pinpoint exactly what got me, mostly because my diet doesn't vary too much.

Off the top of my head, I know Kettle chips affect me, despite their gluten free label. I've eaten in 4 restaurants with gluten free menus and been glutened twice. 50/50 odds aren't very appealing to me !

So, I was wondering about other people's experiences - have you been glutened by so called gluten-free items ? I came across an article the other day that questioned the quality control of gluten-free items, esp. from big manufacturers, and just how gluten-free they were (I wish I could remember where it was). Rice Chex comes to mind since that seems to have affected some people.

Anyone ???

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Utz Chips come to mind--they made me very sick. :angry:

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just the honey nut and chocolate chex, as I recall. but I am *not* an uber sensitive one.

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Lay's potato chips and Fritos. Sure, the ingredients are gluten-free, but the cross contamination must be significant.

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I never can pinpoint it exactly for sure but suspect the following:

Cinnamon Flavored Chex (almost certain) - do fine with the corn and rice and honey nut.

Van's Waffles (almost certain because reaction is consistent every time I eat them)

gluten-free Menu items at Uno's (Cheesburger item - just a cheeseburger w/o bun - suspect cross contamination in kitchen)

Outback Restaurant - unknown which item eaten. But that was once out of about 50 times I've eaten there - They are the SAFEST gluten-free restaurant I've ever been to.

I seem to have better luck with the European brands (Glutano, Scharr, etc) made in Europe and imported. So far also ok with Glutino pretzels.

The more mainstream Celiac becomes, the more companies are jumping on the bandwagon - and rushing to the market with stuff - hence the cross contamination issues and the unintentional hidden ingredients. They get bad info, and 3rd party suppliers don't comply and they don't know it.

It IS a significant problem. Right now I'm suffering from repeated glutenings from having to travel unexpectedly for a funeral and not being able to take food or choose restaurant. Did the best I could, but I'm suffering!

I'm guessing this problem will never go away completely. I'm hoping for the "morning after" pill someday or the "in preparation for" pill someday (they are doing clinical trials on some now)........

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I am allergic to MSG along with my gluten intolerance. I was eating cape cods chips for a while because there website declared them to be gluten free. some flavors would give me horrid stomach pains while others were perfectly fine. then i read on this forum that autolyzed yeast was another word for MSG...so now i have another word to look out for during reading labels...

ive also been gotten by Carrabas chicken caesar salad.. off the gluten free nenu...

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I never can pinpoint it exactly for sure but suspect the following:

Cinnamon Flavored Chex (almost certain) - do fine with the corn and rice and honey nut.

There is soy lecithin in the Cinnamon Flavored chex but not the corn or rice chex. It maybe the soy that is bothering you. I can not have soy, I have a bad reaction from soy in addition to the gluten issue.

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Utz Chips come to mind--they made me very sick

This surprises me Patty, I eat the regular UTZ all the time, and never have a reaction. Did you eat reg or flavored?

I can't eat any "gluten free" labeled foods. The cereals make me ill, as do any of the bars, cookies, crackers, anything with other grains in them. I feel the CC issue is my problem. All the other grains are CC'd by gluten to begin with. Along with the fact that most "gluten free" foods still contain at least 5ppm of gluten and up to 20ppm.

Meds are an issue too. Azo Standard is considered gluten free, yet it glutened me and I was sick for 3 months. Many vitamins are listed as gluten free, yet make so many ill, and many have barley or wheat grasses in them....I just do not believe they are safe.

In my opinion, this isn't good for any of us, even if you do not react to the product.

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We are a sensitive bunch here too. I have had to become super vigilant in the processed foods we decide to eat, b/c my dd has not grown at all in a year. I suspect (no one shoot me down who loves their Chex) it was the small amount of gluten she was getting in Chex and other gluten free products.

All Chex

Van's waffles

Lays

Amy's frozen meals (we both react to these, badly)

Hershey's syrup (it took a few days before a reaction happened)

That's all I can think of, but I know there's more. We really don't do much processed food at all anymore, except for a few Kraft items. I do trust Kraft and the small gluten free companies, but that's about it!

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Interesting - I can't do Lay's stacks chips even though they should be safe - but then I think I'm developing a more sensitive dairy issue. Tostitos are hit & miss.

It is SO hard to travel. I'm with family right now and we made sushi 2 days ago & I am still recovering. No obvious gluten that I can figure out unless it's in smoked salmon (!)...maybe it's just CC in the knives, etc. Argh !

One just gets to the point where one wants to NOT be sick and eat safely darn it - and not have to only stick with rice & potatoes...

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This surprises me Patty, I eat the regular UTZ all the time, and never have a reaction. Did you eat reg or flavored?

They were the plain ones--marked gluten-free. Lays always affected me the same way, actually other than Stax plain, I never did find a chip that would work for me.

I see Van's waffles listed by a couple people--I reacted to those early on, too.

I've gotten to the point that I eat almost no processed food at all--but at the same time, I eat very well. :)

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Ancient Harvest quinoa flakes. The company told me if I wanted no chance of CC, stick with the whole grain quinoa which is processed in a different facility.

Trader Joes almond meal/flour. Didn't contact them but when I switched to a different brand that is processed in a gluten-free facility, my symptoms went away and didn't come back.

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Lays potato chips Classics got me a couple of times. But it was a couple of times out of hundreds of servings. When I have the choice I buy Better Made instead now because they are "Made in Michigan" with Michigan (and several other states) grown potatoes and have stopped using soy oil. A company representative assured me that the only source of gluten in the factory is the BBQ flavoring used on some of the chips. The lines are steam cleaned between batches. I believe Lays uses the same steam cleaning process but they have more products that do contain gluten so the chances for CC are higher.

Maybe I should write letters to both companies asking them the use a dedicated line for gluten free items.

Love my chips!

RA

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I can name quite a few too! Pretty much anything made on shared lines gets me. Lay's potato chips (oh, how I do miss those!), canned tomatoes, and a gluten-free brand of coconut are a few items that seriously got me.

It doesn't happen as much these days. I don't know if it's because I just don't take chances with processed foods any more or if the 20ppm concept is making companies focus more when determing if a product is gluten-free. I think it's a little of both.

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Oil of Olay soap got me :( I only use Dove now.

I called the company before using it and was told that it did not contain gluten. I used it twice and became very sick, it took a few days to get over the reaction.

I find that for me, lately, gluten sneaks up in the products that I use (shampoo, conditioner, soap, etc...)

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The mention of coconut reminded me...SoDelicious Coconut Milk got me...definitely CC. When I notified the company, they first told me it wasn't possible, yet when they sent me a refund, they thanked me for letting them know there was a CC issue, and they would be looking into it.

I just found the SoDelicious Coconut Yogurt in our local Stop-n-Shop yesterday, but now, I will not try it, I don't trust easily after being bitten once. Besides, who could afford to eat it, $2.29 for the tiny container.

Just when I was going to try Pacific Almond Milk, someone mentioned being glutened by it...so, I gave up.

I experimented this weekend...if I add lactose free milk to my coffee anytime after lunch, I have insomnia, if I use it first thing in the morning, I can get away with it. One good cup of coffee a day!!!! :D

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The Honey Nut Chex, the strawberry and chocolate chex...I am extremely sensitive and have gotten sick every time with the flavored chex. :(

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Lays and Ruffles have been hit or miss so we don't eat those now. The Lays Stax make me and one of my gluten-free daughters very sick even though they said they are on dedicated lines. All of the flavored gluten-free Chex cereals have made us sick, except the Rice Chex. We're disappointed about that, because my girls loved the chocolate and strawberry flavors.

I got VERY sick from Clarinex and also from a new prescription of Synthroid. Abbott told me they couldn't verify if Synthroid was gluten-free and I'm knowing the .137 blue tablets are not so I have stopped taking them. Don't know what to do about that though.

The trial and error stuff is very hard and we always feel like Sherlock Holmes trying to decide what made us sick that was supposed to be safe. Journaling our food is very helpful.

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I am very sensitive. The question is more what gluten free foods don't get me! There aren't very many left.

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Kettle Brand Thai Spice chips... that was not a fun next morning...

Also, "gluten free" mostacolli and red sauce from a local restaurant. I was sick for 2 weeks!

Then of course my own airhead moments like dressing (I figured it couldn't be gluten free... boy was I wrong!) and Amy's corn crust pizza (not technically my fault... and I noticed before I ate it).

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I've spent all weekend blaming my favorite restaurant for screwing up my salad.

Well....last night, my daughter starting screaming at her brother, I know, nothing unusual right?

But, she's screaming, "Mom these have wheat!" I asked her what had wheat--nothing in my house has wheat.

They were the Baked Lay's. My son had a party over the weekend and a girl had brought chips with her. It clearly states wheat as an ingredient.

That explains my bathroom trips, extreme irritability, lethargy and my son's stomach aches and bathroom breaks/temper, etc...

Sad thing was--they didn't even taste good. I only had a few to "get rid of them" Aargh!@!*

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I *can* have whiskey and scotch without a reaction, and that's because of the distilling process. So I thought I'd try soy sauce. 'Cause that's distilled, right? I got glutened.

Early in this process of me finding out I was gluten intolerant, I had McDonald's fries. Everyone here probably already knows that's a good way to gluten yourself... and it most certainly is.

Taco Bell's corn tortillas have wheat in them, and that was another early wake up call for me. So no more fast food for me... can't kill me... with 2 exceptions.

Taco Time (not Taco Bell!) has great tortillas, pure corn, and I never had cross-contamination from them. Burgerville only cooks their fries in dedicated oil -- fries-only oil -- and they are safe. Burgerville and Taco Time are only in Washington and Oregon though, I think.

I didn't test positive for celiac disease (from a blood sample), but I did test gluten-intolerant from a saliva test I got from a very good naturopath.

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Lays and Ruffles have been hit or miss so we don't eat those now. The Lays Stax make me and one of my gluten-free daughters very sick even though they said they are on dedicated lines. All of the flavored gluten-free Chex cereals have made us sick, except the Rice Chex. We're disappointed about that, because my girls loved the chocolate and strawberry flavors.

I got VERY sick from Clarinex and also from a new prescription of Synthroid. Abbott told me they couldn't verify if Synthroid was gluten-free and I'm knowing the .137 blue tablets are not so I have stopped taking them. Don't know what to do about that though.

The trial and error stuff is very hard and we always feel like Sherlock Holmes trying to decide what made us sick that was supposed to be safe. Journaling our food is very helpful.

I just switched from unithroid to synhroid 25 mcg. I haven't been feeling that well lately, and it didn't even cross my mind it could be from that. I know armour is gluten free...but that is pretty hard to get a script for, and I hear it's on backorder. I would love to know what you come up with :)

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My son is our resident celiac, and he is fairly sensitive. He has reacted to Midel animal crackers & chocolate chip cookies and to Van's waffles. He eats Lay's chips regularly without any issues. His gastro does follow-up blood work every 6 mos., and he has tested negative (i.e., no indications of gluten ingestion) for the last 2 1/2 years.

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Wellshire Kids Dinosaur shaped chicken nuggets and Wellshire corn dogs were glutening my son. He had sporadic D and I could never figure out why, and his tTG entered the upper limit of the normal reference range. It was not until there was a Chicago Tribune article about this company posted here, that I figured out that it was the chicken nuggets and corn dogs that were making him sick. Their products are labeled gluten free, yet they were being manufactured on equipment shared with wheat. They also told me that since they are meat products, that they chose to follow the USDA "safe" levels, which is <200 ppm. Needless to say that I will NEVER buy another one of their products again! :angry: Now that I have removed Wellshire products from his diet, his tTG went back down to very low levels.

Someone mentioned something about BurgerVille having dedicated fryers. I wanted to add that my local BV fries walla walla onion rings and other seasonal foods in the french fry frier, so I do not to take my son there. It might be a good idea to call ahead to BV before eating there. :)

...and I won't even get started on the McDonalds french fry debate. :o

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