A Little Confused. Need Help

[GFreeMO]

If a product like Betty Crocker Brownies or Bisquick or Pamela's Cookies or whatever is gluten free, is it gluten free? I read so much on here about gluten free products adding up and causing someone to be glutened? Does this really happen? Lets say for example you have Rice Chex for breakfast and with lunch you have some Lays chips and some Udi's Bread. Then for dinner you have gluten free pasta and maybe a gluten free cookie later on and so on. Will these things add up and cause someone to be glutened?

I just feel like I don't know what to think anymore. The doctor says if it says gluten free, eat it. But I keep getting sick. I had some gluten free food at a restaurant yesterday and I am sick as a dog today. I have been buying tamales and pulled pork from costco- they are marked gluten free but are they?!

This is kind of driving me crazy - help.

Thanks!

[bartfull]

Good question! I would think that Udi's, because it is made in a gluten-free facility, should be OK. But a lot of stuff isn't. There might be a TINY bit of CC in some of it, and that might add up. I usually eat mostly whole foods with just a little bit of gluten-free processed food. I eat a couple of slices of Udi's every day and some Blue Bunny All Natural vanilla ice cream. All the rest is meat and cheese and sweet potatoes and veggies.

But today I had some gluten-free cookies. They are Pamela's and I know I don't have to worry about gluten CC, but there may be soy CC or corn CC. I'll let you know tomorrow how I made out. It usually takes 8 to 12 hours for a reaction for me. I hope everything is OK because these are GOOD!

[GFreeMO]

For example, I just read another post about checking cat littler and cat food for gluten. Seriously?!?

[Skysmom03]

Yep cat liter and cat and do food contain gluten . Wash your hands well!!

[GFreeMO]

How are you suppose to find out if cat litter has gluten? There is no ingredient label on my Tidy Cats. Also I use Friskies for my cats. There is no wheat listed on the label. So I can assume it's ok?!??

How are we suppose to live like a regular human being when we have to worry about all of this stuff all the time?

Also, my Dr. said if it says gluten free, eat it. He never said anything about cat litter or anything else like soy. How are we to tell if we have a soy problem? Like for example, I use Coffeemate creamers. They have soy in them. How do I know if they are making me sick or if I am getting glutened by my cat litter or something marked gluten free?

[kareng]

I eat products labelled gluten-free and products not labelled gluten-free with no gluten ingredients. There are a few companies that might not be as gluten-free as they say they are, but that is really rare. You can go to websites of Betty Crocker or Pamela's and see that they have procedures in place before they call something gluten-free.

Pet food will list the ingredients. You are an adult and wash your hands after you feed your pets. There is no danger you will put some pet food in your mouth like a 1 year old might. Some people like to eliminate as much gluten stuff from thier homes as possible, thus the grain free pet foods. I don't think every cat litter has wheat but I have heard of one that proudly puts that fact on it in big letters. I just use plain clay. You might not want a cat to track that wheat litter around.

To be honest, Mo, I think you need to stop....take a deep breath...and start again. Eliminate all the obvious gluten. Maybe dairy for a few months becasue its hard to digest. If a food seems to bother you, don't eat it for a few months or wait a few days and try it again. It can be hard to tell which of the 15 things I ate today disagreed with me sometimes. For example - It has nothing to do with gluten, but bananas can give me the same bloat and burping. You don't need to eliminate a bunch of foods that bother others. Soy, dairy, corn, etc don't bother me. Bananas might not bother you. Corn did bother me for the first 6 months or so. And still -If I eat a lot of it in one day - Corn Chex, then corn chips at lunch, popcorn for a snack and corn in my soup - I notice it.

Eating out is risky, even at "good" places. I always have a packet of nuts with me. Maybe a few pieces of candy, too.

I think at least 90% of the diagnosed Celiacs in the US feel pretty good and have clear blood tests & endos to prove it. They are not the ones that stay on here seeking help. Looking at this forum, it can seem like we never get better & we must have issues with other foods or that everything has deadly cc. That is the nature of these disease based forums. Those that are doing well, don't need the help and support and they aren't commenting.

I think most everyone on here wants to be helpful so they rush to tell you what helped them. Some have felt so awful for so long and have other intolerances. I thik its just natural to asume others might have the same intolerances.

I hope this helped you, MO. I may have made others angry, that isn't my intention.

[bartfull]

No offense taken, Karen. I was just thinking that if a person reacts to anything greater than 20 parts per million, and they eat a whole bunch of 5 parts per million foods in a short period of time, they might get glutened. I had never thought about it until GFreeMO brought it up.

[kareng]

No offense taken, Karen. I was just thinking that if a person reacts to anything greater than 20 parts per million, and they eat a whole bunch of 5 parts per million foods in a short period of time, they might get glutened. I had never thought about it until GFreeMO brought it up.

.

Just because my banana tests as less than 5 parts per million (because that is the test I bought) that does not mean it has any gluten. 0 is less than 5. Some companies choose a cheaper test that tests for 20 ppm. That does not mean the food has 19 parts per million (which is still an extremely tiny amount).

There are explanations about this 20 ppm thing all over this forum. I think there is one on Univ of Chicago's site, too. Of course less or 0 is preferable. What I am understanding from some of these is that 20 ppm is such a small amount that most healthy guts will not react to it. The same way that our immune sytems don't necessarily mount a full attack on 1 germ floating thru the system.

But in the beginning of a Celiac "LIfestyle ", the gut isn't healthy. This is one reasons why, in the beginning, it seems to be the best idea to eat naturally and unprocessed gluten-free stuff as much as possible.

[IrishHeart]

Exactly what Karen said.

Sorry, Mo, but methinks you need to start fresh with a whole foods diet rather than start speculating what "may be" the problem.

Dump dairy and go from there. Let your gut heal before eating out, trying various foods and worrying about it all. IMHO

FWIW, I choose certified gluten-free facilities for any packaged foods I may buy (Iike Enjoy Life, Pamela's, Bob's RM, Nutsonline, Crunchmasters, Country Life Vitamins, Cobani yogurt, for example)

but I also know that most foods that are inherently gluten-free are safe (meat, poultry, fish, cheese).

Some, designated as "gluten free" (but not certified with the big black GIG symbol) ---which is voluntary, not mandatory by law, BTW----could for "iffy" for me.

I never choose anything from a shared facility--that processes wheat, but that's JUST MY personal preference. Many celiacs do fine with them.

[shadowicewolf]

I agree with the whole foods diet. Serioiusly.

In my first few months i couldn't handle many processed foods (rice chex was like the only one).

Now, i can happily say that betty crockers mixes work for me.

[shayre]

Hi. I was in your shoes, and it took me a long time to figure out my issues. Everyone is different. I happen to fall into the "super sensitive" category. Which means that I can't eat any gluten-free premade food that doesn't test down to 5 ppm, and that's rare. I can't eat gluten-free products that even test down to 10 ppm. For example, I can eat a few enjoy life cookies (10ppm testing), but if I eat the whole box...then brain fog and bloating sets in. I find that if my ppm adds up, then I'm glutened. For me...it's not just what I eat in a day...it's over all days. For example, I find out that something has really low grade contamination because over time...I just go down hill. At first I'm fine, and I think that the product is safe. Then 2-3 weeks later, I'm getting worse by the day. This has happened to me with rice milk, almond milk, peanut butter...even though the facility may be gluten free. Sometimes the ingredients that the manufacturers order into their facility have low grade contamination...flours, oils, etc. They may even test the ingredients as they come in, but if they don't test the final product AFTER it's made (as it adds up)...then I always pay for it. I doubt that you are this sensitive, but if you are...then there is help to be found under the super senstive forum. And yes, cat litter and pet food. The cat tracks residue all over the house fromt the litter. The cats and dog lick themselves after eating getting food residue on their fur before you pet them...and they lick you. They must be gluten-free. Just look for "grain free" foods for them. There is plenty to be found. The other examples on this post...I can't eat rice chex even one time without reacting. Anything that is 20ppm is an immediate reaction. It might be helpful if you also got a blood allergy test. I was still having problems, and it turns out that I'm allergic to soooo many foods...meats, veggies, fruits, caffeine, chocolate, yeast. Your immune system can just be whacked out. I have eliminated other foods, and rotate my existing foods on a 4 day rotation. It has helped tremendously with bloating and how I feel otherwise. So, there can be other foods causing you problems as well...most likely...and you will have your own set of intolerances. Not everyone will have other issues, but a common thread seems to be the soy, dairy and corn. A food journal could help, but I needed the test because it became to hard to figure out. My immediate problems were soy, dairy, corn and nightshade foods like potatoes, tomatoes and peppers. That last one took a while to figure out. Mine have also not changed after a few years, and if I continue to not rotate my foods then I can become allergic to new foods that I eat all of the time...which was the trend in my blood test results too. Just take a deep breath, and start over from scratch. I know it's hard if you are busy, but eat only whole foods for a while. Add in only one new food every couple of weeks to see how you do. I get tired of calling manufacturers to get information about their processing, but welcome to our world...has to be done. I will have you a few warnings that I wish that I knew sooner...watch out for rice milk (can be processed with barley), oils (some are made on equipment with wheat germ oil or other...Bertolli good), Amy's products mostly bad for me and others too, Food for life (use barley in their processing, and I reacted very badly). Some celiac disease patients are so lucky to be able to eat the common gluten-free cereals and betty crocker cookies...and Amy's! Unfortunately, there is a group of us who cannot touch them! I hope that you are one of the lucky ones:) Even if you are, I'd do whole foods only for now!!!

[Juliebove]

How are you suppose to find out if cat litter has gluten? There is no ingredient label on my Tidy Cats. Also I use Friskies for my cats. There is no wheat listed on the label. So I can assume it's ok?!??

How are we suppose to live like a regular human being when we have to worry about all of this stuff all the time?

Also, my Dr. said if it says gluten free, eat it. He never said anything about cat litter or anything else like soy. How are we to tell if we have a soy problem? Like for example, I use Coffeemate creamers. They have soy in them. How do I know if they are making me sick or if I am getting glutened by my cat litter or something marked gluten free?

I think the only cat litter that isn't safe is the Swheat Scoop because it is made with wheat.

As for things that *say* they are gluten-free, you still have to read the label and not just the ingredients. Look for things like "made on shared lines with wheat". Or "processed on the same lines with..." You might also see something like, "packaged in the same facility with..." This last one can be iffy. If you are super sensitive, you may want to avoid those things too. For for us, we generally only concern ourself with the shared lines and processed on the same lines with.

The best words to see of course would be "made in a dedicated facility". Then you know for sure. But there will be countless times when you *don't* know. Some things are made on shared lines and they clean the lines between runs. Would these things work for you? Only you would know. Unless of course you are a person who doesn't get obvious symptoms.

I have also had questions about things like corn tortillas when the maker also makes flour ones. Or gluten-free breads when the company also makes wheat containing breads. And then there is the whole Food For Life thing which is controversial. Sometimes you just have to call the company and hope they give you a straight answer. Because from what I have seen on these boards, they don't always do that.

But bottom line is... If you react to something, don't eat it!

[GFreeMO]

Thank you all so much for the help! I really appreciate it. I suppose the best thing to do is to start cooking from scratch more. I am going to keep the Betty Crocker, Chex and Bisquick and avoid the rest of the stuff. The boxes say they are from a dedicated facility so i'm going to trust them.

I had a blood test come back that showed that my liver enzymes were elevated so I am trying to be super careful with gluten to avoid more damage to my liver.

I think like some of you said that my immune system and gut are really out of sorts right now and it's hard to tell what is making me sick. Maybe the fact that I am just unhealed and have only been doing this for a little less than 2 weeks. Hopefully in time, I will feel better. Like they say - Rome wasn't built in a day. I am just not a patient person. I like when I go to the Dr and he says here take these pills and in a few days whatever I had is gone for good. - This has just all been really really hard for me. Thanks for this forum and the kind people here, it is getting a bit easier.

- MO