Setback From Gluten

[labrisbin]

Good Morning Everyone,

I have been gluten free for just over 6 months and recently had an appointment with my doctor who explained that any amount of inadvertent gluten can cause a "setback" for me. He offered a lot of information during this visit and at the time I didn't ask him to clarify what he meant by this particular statement. I had been telling him about having eaten out and not receiving the gluten free meal I had requested which led to subsequent celiac disease symptoms.

I don't want to become afraid to occasionally eat outside my home, so I'm wondering what your thoughts might be or if anyone has heard the same thing.

Thanks for your input.

[bluebonnet]

well its a gamble, really. you may be perfectly fine eating out and trusting the restaurant took every precaution but then again you really won't know until after you eat. one way of inadvertently ingesting gluten may come to you via cross contamination or even beauty/health products like hand lotions,etc. it could be residue from yourself or someone who prepared your food. we just can't throw caution to the wind.

[Skylark]

It's great you have a doctor who took some time with you.

I think he was probably talking about the possibility of damaging your villi and triggering autoimmune reactions again if you eat gluten. You can postpone your healing by eating gluten while your immune system is settling down, which can take up to a year. I'm sure you're being careful; he just probably wanted to be sure.

[labrisbin]

Thank you for taking the time to answer. There is so much to learn and constantly be aware of. I'm assuming that even after our immune systems settle down, ingesting gluten would lead to some kind of an autoimmune chain reaction? Or after a certain amount of healing has occurred, perhaps an accidental glutening wouldn't be so hazardous? I suppose though, since everyone is different, it would all be subjective. I guess I'm just trying to decide if it's worth having the occasional meal out. Perhaps there isn't an answer - ha! Thanks again!

[ravenwoodglass]

You may be able to eat out on occasion but perhaps you might want to wait until you have healed fully. Then pick a place that has an actual gluten free menu as they are more likely to be aware of CC issues. It is getting easier for us as more and more people are getting diagnosed and places are getting more aware of what they need to do to feed us safely.

[lucia]

Your doctor is correct that even a small amount of gluten can cause an autoimmune reaction in your small intestine. According to Dr. Peter Green's book, research shows that just 10 mg (or .01 grams) is the limit that most celiacs can tolerate without a reaction. To put that into perspective, a slice of bread has on average 4.8 grams of gluten. So, 10 mg is a trace amount.

Knowing that, I think it's up to each of us individually to decide what we are willing to risk. You're obviously responsible with your diet, since you were accidentally glutened just once at a restaurant. The issue for you then becomes: What level of precautions do you take to avoid gluten?

I haven't answered that for myself yet. I know some people on the forum simply don't eat out. They may take gluten-free items to a restaurant to meet with friends or family, but they don't eat the food. I like to eat so much, it's hard for me to even imagine that ... but it's one day at a time with this for me now, and I give those people props for taking care of their health.

[Skylark]

Sorry, but there isn't an answer. Doctors have not been able to decide how much gluten is safe for celiacs. There are gluten tolerance studies where biopsy-confirmed celiacs have eaten trace amounts of gluten daily and their intestines were OK on biopsy. They didn't always feel good during the study, though!

Just be sensible and careful. There are more and more chains that offer gluten-free food. I eat at Outback, Chipotle, In-N-Out burger, P.F. Chang, BJ's Restaurant, and Claim Jumper, all of which have gluten-free food available and procedures to minimize cross-contamination. I eat at sushi joints all the time, sticking to simple things like edamame, tuna rolls, or sashimi and rice. I also hang out in a local restaurant and pub that will make me completely plain salmon on salad greens with oil and vinegar that has never given me trouble.

Also, high-end restaurants where the chefs are trained at a culinary school and are making everything from scratch can usually make you something safe. I've gotten wonderful gluten-free food that gave me no trouble at a local expensive restaurant/concert venue where the chef happens to like to do vegetable puree based sauces. Indian is one that can work too, as long as you make sure there is no flour used to thicken the curry.

I've given up on "ethnic" restaurants, and most small "Mom and Pop" style places. Ethnic restaurants like Thai or Korean present too much of a language barrier and I keep getting glutened no matter how carefully I try to explain. Small "Mom and Pop" places may have great intentions, but they tend to rely on commercial seasonings and broths and the kitchen staff usually lack the training to know about hidden gluten. I avoid eating anything but plain salad with oil and vinegar at places like that.