Has Anyone Ever Been Glutened But Had No Idea How?

[angel42]

Hi,

I am hoping someone can help. I am generally extremely careful about what I eat. I am probably a little overly cautious about being glutened. I never go out to eat anymore unless it's a gluten free restaurant or a restaurant with a gluten free menu. (I have had too many bad experiences with too many clueless waiters) I either prepare my own food or get lunch at whole foods.

In spite of all of this I seem to be getting sick again. I have not changed my diet at all or eaten anything new but it's unmistakeable, the brain fog, running to the bathroom every ten minutes etc. I have been so careful it really doesn't feel fair. It's not like I went out and had a big plate of pasta. I really don't know what to do. I have such a limited diet to begin with I really don't want to restrict it any more.

Has this happened to anyone? Can anyone help?

[missy'smom]

When you say that you get lunch at Whole Foods, I'm assuming you get salads from the food bar? There is always the possibility of cross-contamination or even though they list ingredients, is it possible that one of the ingredients has hidden gluten in it? Maybe it didn't before but now it does? I used to get salads there but always feel like I'm taking a risk. They use good ingredients but don't promise that they're free of allergens. Also I've noticed that some of the salads are made from leftover veggies from the glass case the day before, like roasted sqashes. This would add to the possibility of cross-contamination because those ingredients are next to breaded items.

[angel42]

  missy said:

When you say that you get lunch at Whole Foods, I'm assuming you get salads from the food bar? There is always the possibility of cross-contamination or even though they list ingredients, is it possible that one of the ingredients has hidden gluten in it? Maybe it didn't before but now it does? I used to get salads there but always feel like I'm taking a risk. They use good ingredients but don't promise that they're free of allergens. Also I've noticed that some of the salads are made from leftover veggies from the glass case the day before, like roasted sqashes. This would add to the possibility of cross-contamination because those ingredients are next to breaded items.

I guess it could be cross contamination and I could stop buying lunch entirely and always bring my lunch. I am already at the point where I virtually never go out to eat I don't want to get to the point where I never eat food prepared by anyone else for fear of cross contamination. I honestly don't know what to do.

[TinkerbellSwt]

It has happened to me a few times. I have to say one of the better places always was for me Whole Foods, but you cant be totally sure of no cross contaimination there. They do list all ingredients and hide no wheat or any type of gluten, but you cant trust people. I would go to bringing my own lunch for a while and see if you feel better.

If not, could something else be bothering you? Maybe dairy?? I have heard it happens. It is not uncommon for a celiac to grow a sensitivity to dairy. I am sure someone else with more info on that can chime in on that.

You can also keep a food diary, to help you look back at what your day consisted of. I realized after a while! that I was getting cc from my computer keyboard! Innocently my b/f was using the keyboard and eating Nacho cheese Doritos (yes he loves the only ones we cant have!)

Those are the only suggestions I can come up with, I know others will help.

I hope you feel better soon!!

Stephanie

[alamaz]

Just in my experience, I can't eat at the Whole Foods hot bar or salad bar. Everytime I've been majorally glutened it was coincidentally right after eating there. It might depend on which Whole Foods you go to also.......

Amy

[missy'smom]

" They use good ingredients but don't promise that they're free of allergens. "

I should add the words "that I'm aware of" to the above statement. I don't know what their policy is on deli food.

Maybe just re-evaluate the choices your making with reguards to WF salads. Maybe go in on a day when you're not buying lunch and not feeling emotional or frustrated.

Sorry you're not feeing well. It's frustating and overwhelming sometimes. The lack of convenience is one of the hardest things for me on this diet. If one wants more convienience it is possible if one eats the same thing all the time but to have both convenience and variety I something I've yet to figure out. I need a bigger freezer!

I buy those white corning ware freezer to oven individual dishes with lids and fill when I have leftovers from dinner(like meatloaf, mashed pot.and veg. or mixed variety rices pilaf with some kind of protein) and freeze and take to work when I was working or now that I'm home eat at home. I bought small plastic disposable containers from the restaurant supply store to put my salad dressing in and put them in a larger tupperware container and added the bagged mixed salad greens. Minimal effort.

Hope you are feeling better soon.

[happygirl]

I would try a two-tiered approach:

1. Stop eating out entirely. (I know, no fun). Only eat food prepared by you. See if this "solves" the problem. (I no longer eat out at all, as the only times I were being glutened were then....I finally had to put my foot down and stop it, because I have severe reactions.)

2. If Step 1 does not eliminate your symptoms, then I would recommend trying something else. Either eliminating other foods, or a doctor's appointment to rule in/out other conditions. Also, have your full Celiac panel run at this time, to see if gluten is still part of the problem.

Best of luck, and I sincerely hope that you find answers to your mystery!!!

Laura

[kbtoyssni]

For a while last summer I was getting symptoms of glutening and couldn't figure out where they were coming from. I soon realized that peanuts give me the same symptoms. I didn't figure this out until 10 months of being gluten-free and 6 months after feeling completely better from going gluten-free. I'd consider other foods. Has your diet changed *at all* in the past few months? The reason why the peanut thing showed up for me when it did was because I moved out of my parents house and started eating peanut butter sandwiches for lunch. I rarely at PB at my parents'.

[oceangirl]

  kbtoyssni said:

For a while last summer I was getting symptoms of glutening and couldn't figure out where they were coming from. I soon realized that peanuts give me the same symptoms. I didn't figure this out until 10 months of being gluten-free and 6 months after feeling completely better from going gluten-free. I'd consider other foods. Has your diet changed *at all* in the past few months? The reason why the peanut thing showed up for me when it did was because I moved out of my parents house and started eating peanut butter sandwiches for lunch. I rarely at PB at my parents'.

Hi.

I'm sorry you're not feeling well and hope you get to the bottom of it soon. I get glutened OFTEN and OFTEN have no idea where the heck it came from! I NEVER eat out, make almost every scrap of my own food and bring my own meal to every event I go to. I concur with others who recommend making ALL your own food for a bit. If that doesn't work, you should try elimination diet to discern what other foods are bothering you. It is a long and often discouraging process- I am in the middle of going back to this now after 9 relatively positive months. If you are extremely sensitive this may take some time. My heart goes out to you as I know the feeling of wanting to throw your hands up. But, after taking every processed and questionable food out of my diet I have just had a fairly decent three days and nights.

Best of luck!

lisa