Question For The Less Sensitive: How Far Do You Go?

[Tallforagirl]

I'm recently diagnosed, and was only tested because my sister is Celiac (well, plus a case of what I thought was gastro).

For those who are not sensitive in their reaction to gluten, how far do you go to protect yourself from ingesting it?

Do you worry about things made on production lines that process gluten-containing foods? Do you only worry about the "obvious" sources such as toasters, deep fat fryers and shared condiments, or not even those?

Does anyone think it is being overly cautious to avoid gluten-free pizza from a restaurant which is cooked in the same oven as the other pizza?

TFG

[mef]

I used to be far less sensitive and I wasn't as cautious about it. However, the longer I was gluten-free, the more severe my reactions to gluten have become. I used to think scraping the chicken out of the flour tortilla was okay...because I threw away the wheat part, right? (I know that probably made some of you wince) Well, there are so many particles of gluten on that chicken you are going to hurt yourself.

Now, I'm obnoxious about it. Even if you aren't sensitive, there is damage inside you may not feel now, but could have reprecussions in the future. As a woman, you have to think about your body being able to absorb the nutrients you need. If you become inflammed, you lose the opportunities to absorb vitamins. Think:osteoperosis. Additionally, you can get throat/stomach/colon cancer from years of constant irritation.

I have a label maker and any condiments that are specifically mine get a big "NO WHEATIES" label on it.

No, I don't think you are being overly cautious to avoid a gluten-free pizza. I wouldn't eat a gluten-free pizza made in a glutenous oven.

Good luck!

[LuvMoosic4life]

definitly can never be too cautious

I live in an APT. where i go to school. Since going gluten free, I havent used my oven. I've been using a toaster oven to make all my stuff.....anyways.....a couple weeks ago I decided to make some chicken drumsticks in the regular oven. I had them on a a clean tray covered in tinfoil. SOmehow a few hours later and all the next day i was experiencing the symptoms I have when being glutened. I hadn't ate anything differant, so it had to be the oven...it was the only differant thing I did....I couldnt believe it.

[GFinDC]

Question For The Less Sensitive: How Far Do You Go?

What, do you expect all the men on the board to respond?

Just kidding!

I didn't think I was very sensitive to gluten when I first started the diet. But after a few months it seemed to change. I got more sensitive to very small amounts of gluten. And I now find I am sensitive to other things as well, like yeast and dairy and sulfites. I can eat dairy without much in the way of gastro problems now, but I can't sleep well when I eat it. I don't think I would eat a gluten-free pizza from a gluteney oven. Sounds risky to me.

[Hummingbird4]

I do eat products made on shared lines. But I don't scrape the toppings off pizza or eat the cheesecake and leave the crust. I have a gluten-free kitchen at home, so thankfully my house is safe for me. I feel really uncomfortable eating out in restaurants, so I very rarely do. If I go to someone's house for a party or something, I usually don't eat or am very careful about the items I choose. At work, I put down a paper towel under my plate or bowl in the microwave, and on the break room tables and counters. I am mindful of what I touch and wash my hands frequently.

So far, I have not been glutened that I know of. However, I do know that a couple of months ago, I accidentally ate some peanut-topping that had wheat starch in the ingredients -- and I didn't react. So I don't really know if I'm accidentally ingesting some gluten here and there, but I'm trying extremely hard to be careful.

[ArtGirl]

The longer I am gluten-free, the less sensitive I seem to be. At first, any glutening would mean a several days of D and 2 weeks of fatigue. Now it's a few hours and three days respectively.

I am extremely careful about getting glutened. I, too, would not eat a g.f. pizza at a regular pizza place. I don't eat from buffets, either. It's just not worth either being sick (even mildly) or in possibly doing silent damage. That said, I will eat gluten-free foods that on the label they say they use good cleaning methods (whatever that phrase is?) on shared equipment. So far not a problem. I would prefer, however, to stay with those companies that have totally gluten-free facilities. Actually, I make most of my gluten-free baked goods and rarely buy processed foods.

I'm like Hummingbird. My house is a gluten-free zone. I eat out rarely but there are two restaurants that have proven to be fairly safe (one CC out of about 15 visits). I, too, wash my hands frequently. At church, after the greeting time where everyone shakes hands (some after having had donuts and pastries earlier) I quitely retreat to the restroom and wash my hands. I also wash my hands after ordering and handling a menu at a restaurant and then don't touch the table after that.

MSAU22 - could the contamination have come from the oven door handle? Getting on your hands? Or even cupboard and refrigerator door handles. I know those were places that were a real problem for me before we made the whole house gluten-free. Even supportive family members just aren't that careful when touching things after handling gluten foods.

[1morething]

I've been gluten free for 2 months now. I have a husband and a daughter that eat regular food. I have my own toaster, peanut butter jar and butter but other than that, I don't worry to much about C/C on production lines. I went out for supper Saturday and actually got glutened by the salad dressing. I was able to see the bottle to read the ingredients(after the fact) and it had malt vinegar and soy sauce. Who would have thought!! But thinking back, the steak I ordered without spices, was probably cooked on the grill that had other steaks with spices cooked on. That could have been a C/C experience that I'm not sure if that alone would have hurt me due to the salad dressing being so obvious.

Live and learn I guess.

[Green Eyes]

Okay, another question on the subject. For those of us who are less sensitive - do you go to extreme measures to see that you are indeed making progress with your diet?

I want to be retested for celiac just to see my numbers are where they should be. Would it be necessary to continue to get tested. That would be one way of seeing we are staying on track.

What do you think?

Jennifer

[happygirl]

See #7: Open Original Shared Link

And see: Open Original Shared Link

Follow up testing may be particularly important for those with less outward signs.

[Hummingbird4]

I am planning to have my antibodies retested at 6 months, which for me will be the end of Jan/beginning of Feb. I do not plan to have a repeat biopsy.

[misseditbythatmuch]

Hi TFG,

I am in the same position as you. I do not have any digestive reactions to gluten. So if I get glutened, I don't know it. This may not be that bad if it happens rarely. But I am wondering if I will come across cases where I am regularly eating something that is supposed to be gluten-free, but isn't. The main way I will know if this is having an effect on me is likely only if my main known symptom (iron-deficiency anemia) goes away. (I have other possibly symptoms, but it is not clear yet whether they are caused by celiac disease.)

Geoff

I'm recently diagnosed, and was only tested because my sister is Celiac (well, plus a case of what I thought was gastro).

For those who are not sensitive in their reaction to gluten, how far do you go to protect yourself from ingesting it?

Do you worry about things made on production lines that process gluten-containing foods? Do you only worry about the "obvious" sources such as toasters, deep fat fryers and shared condiments, or not even those?

Does anyone think it is being overly cautious to avoid gluten-free pizza from a restaurant which is cooked in the same oven as the other pizza?

TFG

[sbj]

I'm recently diagnosed, and was only tested because my sister is Celiac (well, plus a case of what I thought was gastro). For those who are not sensitive in their reaction to gluten, how far do you go to protect yourself from ingesting it? Do you worry about things made on production lines that process gluten-containing foods? Do you only worry about the "obvious" sources such as toasters, deep fat fryers and shared condiments, or not even those? Does anyone think it is being overly cautious to avoid gluten-free pizza from a restaurant which is cooked in the same oven as the other pizza?

Hi TFG:

I am a silent celiac - no symptoms other than osteopenia.

Regarding production lines that also process wheat-containing foods: I might eat some chips or whatnot on rare occasions from such lines as a treat. I think what is important is to not eat this sort of stuff regularly, as in daily or several times a week.

When I eat out, I gotta admit, I feel as if I am taking a chance. So, for one thing, I eat out rarely. I do try to ask questions about how the food is prepared. If the server is clueless then I won't go back. I try to eat at local small mom and pop shops.

A gluten-free pizza cooked in a regular oven would completely miss the point! How could anyone who offers a gluten-free pizza be so clueless? That would be like a chinese restaurant offering a gluten-free meal that was stir-fried in the same wok as gluten foods. Am I crazy to assume that when Pei-wei provides a gluten-free menu that they are preparing the food in a gluten-free manner? (BTW, I live in Long Beach, CA - a very large city near Los Angeles and I have yet to find a pizza joint that offers gluten-free pizza - where are they?)

For myself I figure that I will follow these rules until I find out that they aren't working. That is, I am already scheduled for a 6 month blood panel follow-up to gauge how I am doing. If I find that my levels are still too high then I will need to make further adjustments that might include avoiding restaurants, wheat lines, etc. Until then I am giving myself some latitude. If I can lower my celiac panel to acceptable levels and still eat at restaurants or snack on foods from wheat-processing lines then that is the way I want to go. I don't want to skip out on restaurants for the rest of my life if I don't have to!

[Tallforagirl]

sbj, sounds like a plan you have there! I think I'm with you on this one.

Where I live there are a number of local pizza joints that offer gluten free pizza. However, I have so far checked with two of them whether they cook the pizza in the same oven as the regular pizza, and both confirmed they do, and could not guarantee there would be no CC.

It seems unlikely that any pizza restaurant would have a totally seperate arrangement for preparation and cooking of gluten-free pizza, so it just seems like too big a risk to take.

Unfortunately, I am having trouble explaining to my BF why I don't want to eat at a restaurant that specialises in pizza, even if they do gluten-free pizza.

Besides, I have now perfected my own gluten-free pizza base (I used Orgran pizza crust mix, added a couple of handfuls of parmesan cheese to the dough, then brushed with olive oil and prebaked it for about 10 mins before adding topping and cooking for 15 mins. Yum.

[kbtoyssni]

I wouldn't necessarily be alarmed by a shared oven. Mazaratti's in NYC has a shared oven, but the gluten-free pizza was always placed on the top shelf with a clean pan underneath. It's a pizza place whose gluten-free pizza comes highly recommended by celiacs so people must not be getting sick.

[Yam Enthusiast]

The potentially insidious thing about being "less sensitive" is that you can do yourself intestinal damage without knowing it. I have celiac but do not go into total distress from tiny amounts of gluten. As a result I thought i could get away with small amounts.. especially at parties or social events when I didn't want to make an issue out of the food choices. But inevitably I'd cross a tipping point and then bite my tongue or inside-cheek a day or two later.... the result of inflammation of the entire digestive tract. From there, I would get really a brutal canker sore wound that would take 3 or 4 weeks to heal.

I spoke with a specialist about this... she scared me into being more vigilant. She said that with my diagnosis (actual full celiac with damaged villi when I was first diagnosed), here is the thing to remember: The threshold for intestinal damage is probably LOWER than the threshold for manifested symptoms such as mouth-biting and severe canker sores. In other words, if you have true celiac disease and you eat a small piece of bread and get away with no canker sores or blow-up symptoms in the following week, it's still probable (if not certain) that you did incur some damage to the intestinal villi.

[luvs2eat]

I wasn't as physically sensitive when I was first diagnosed... and thought I was eating gluten-free by picking croutons off salads and blowing crumbs away or taking a burger off a roll. The peeps here set me STRAIGHT!!!

The pizza place, Jules, in Doylestown, PA, offers a gluten-free pizza. I talked to them and they told me they send the pizza thru the conveyer oven on its own piece of alum. foil to avoid cross contamination.

I'm SO much more sensitive now that I used to be... and way more knowledgable than I used to be... again... thanks to the peeps HERE.

[SandyStPeteFL]

I too follow a lot of the same rules as most of the people above. I have a seperate toaster for my husband (he is NOT gluten free) and I use the toaster oven. I do not bake any items in my regular oven that has gluten in it. I have labeled all my jars of food with big "gluten-free" stickers on them.

I do not want to get sick from gluten ever again. Too much misery.

I will not give up eating at restaurants but have found that if you talk to the culinary managers at most places they can do their darndest to be sure you have a gluten free meal. I don't think any of the places we go to eat will ever guarantee they are gluten free because of legalities. We have eaten at Outback a couple of times now and I have not gotten ill. We are going to try Red Lobster next week. I called them and spoke with the night manager and the culinary manager. They told me they could work with me on a dinner that would be safe for me. No broiled food, etc because of CC but the scampi would be safe, the shrimp cocktail would be safe, they can use fresh oil for me...etc.

[SharonF]

I'm not sure how widespread of a chain they are, but Godfather's offers gluten free pizzas. You have to call and request them one day ahead of time, though, and then they make them the night before so they're not in the oven with the other pizzas.

[ArtGirl]

bite my tongue or inside-cheek a day or two later.... the result of inflammation of the entire digestive tract.

Oh my. Was that from gluten???? Now that I think about it, I haven't bitten my tongue or inside cheek in probably a year or more. And I was always doing that before. Gluten can cause the weirdest things to happen.