How Precise?

[murphy203]

I was dxd with celiac disease. But how precise do I need to be? I am almost asymptomatic,, dxd from anemia (I do have all of those symptoms). Can I have pizza made at a local pizza place that predominately serves regular pizzas? Can I have a potato salad from Whole Food deli area doesn't contain gluten (the guy serving me didnt know what gluten is)?

[bartfull]

Even if you have no symptoms, every exposure to gluten is doing damage to your body. No pizza from a pizza joint unless they make their pizzas in different pans and a different room, and even the toppings can't come out of the same bins as the regular pizza toppings. Flour dust gets in the air and settles on everything. There is a pizza place near me owned by people with celiac family members. I can eat their pizza safely but even so, I eat outside at the picnic tables or get it to go so I don't have to breathe the dust.

 

I would never eat anything from a deli either. One wrong spoon dipped into whatever you're getting and it's contaminated. And if any server of any type doesn't know what gluten is, it's best to pass.

 

Go to the Newbie 101 thread in the coping section and even if you've read it before, it's a good idea to brush up on it.

[cyclinglady]

We RARELY eat out! It is just too risky. When we do, it is at a totally gluten-free restaurant or we find one that has been reviewed by a celiac. Even then, I drill the manager and chef. Very nice restaurants seem to do a great job.

If I get weird vibes, I resort to my emergency food and just order a drink.

Our fast food is typically a Costco chicken! Yum, we had that for lunch!

[cyclinglady]

Oh, I was anemic too. That resolved within six months after going gluten-free. But two months in, I fractured a few vertabrae DOING NOTHING!

Get your bones checked.

[murphy203]

I just heaved a huge sigh of dismay, which I know you can't hear, but it happened. :-P Its hard to gage how to procede knowing I have celiac disease but not having huge and immediate symptoms like some. I have been as perfectly clean as I know how to be so far. One niight, after having an Udi's gluten-free bun, I had some acid reflux. For the most part, I avoid gluten-free substitutes.

CL, I had a bone scan because of decades of synthoid about a decade ago and my bones were better than average -- lets hope that advantage then works in my favor now.

[vickiguerra]

Did you have an endoscopy to verify damage?

[cyclinglady]

I just heaved a huge sigh of dismay, which I know you can't hear, but it happened. :-P Its hard to gage how to procede knowing I have celiac disease but not having huge and immediate symptoms like some. I have been as perfectly clean as I know how to be so far. One niight, after having an Udi's gluten-free bun, I had some acid reflux. For the most part, I avoid gluten-free substitutes.

CL, I had a bone scan because of decades of synthoid about a decade ago and my bones were better than average -- lets hope that advantage then works in my favor now.

For the first year, I had issues with Xanthan Gum which is added to many gluten-free products. i switched to guar gum instead when baking. In defense of Xanthan Gum, it never bothers my gluten-free hubby. He is my canary!

[RMJ]

I am also almost asymptomatic. For two years I've done "no gluten ingredients". Some of my antibodies are back into the normal range, but not all. So that level of gluten free isn't enough for me (I'm now trying the Fasano gluten contamination elimination diet).

[murphy203]

RMJ, I am starting to think that it may actually be worse for us without immediate physical symptoms to clue us in when we consume accidental gluten, in terms of maintaining commitment and strict adherence.

Vicki, i do have villi damage, and my GI is going to recheck in another month or so to see how I am responding gluten-free because I need another endoscopy to check on a bile duct.

CL, interesting comment about Xatham Gum. No doubt I have had it before -- not that I knew it. I will have tomrecheck my reaction next week.

[RMJ]

Oh, I agree. I'm okay with the commitment, but it would be easier to find the source of gluten contamination if I had symptoms. But on the other hand, I'm lucky that I don't have to suffer through symptoms.

[vickiguerra]

Villi damage is what I have too along with inflammation.  My brain is tired from thinking about all of this. More research tomorrow.

 

Have a good night

[Gemini]

I was dxd with celiac disease. But how precise do I need to be? I am almost asymptomatic,, dxd from anemia (I do have all of those symptoms). Can I have pizza made at a local pizza place that predominately serves regular pizzas? Can I have a potato salad from Whole Food deli area doesn't contain gluten (the guy serving me didnt know what gluten is)?

Whole Foods in my area does a fabulous job with their deli stuff so don't be scared off because not all deli's are alike. I have eaten their potato salad numerous times with no issues and I am a very sensitive celiac who WILL become sick from minuscule amounts.

The one I go to does not keep their potato salad or cole slaw next to gluteny stuff. I ask them to change their gloves and use a clean spoon to dish it into a container. If the displayed food is near to gluten dishes, they will go out back to the fresh container of potato salad and take it out of there. If you are not getting the help from a certain employee that you should, ask to speak to someone who has more experience with allergy related problems.

Don't despair........you can eat successfully out once you learn the ropes and know what to ask for. I find the Whole Foods in my area really do a great job and I have never gotten sick from their prepared food area. However, some weeks they do more gluten containing stuff so I pass getting anything there if it looks dodgy!

[Gemini]

I forgot to add that recently I had my blood work done for a re-check and it was all really good.......all numbers close to zero. That would not happen if I were ingesting gluten on a regular basis. Their potato salad and cole sale are gluten free but they do not test so cannot mark it as such.

[Nikki2777]

I eat out a lot, but I won't go to a pizzeria that has regular pizza unless I can see clearly that the areas are kept very separate, gloves are changed, etc.  There's just too much flour floating around.

 

I usually just have a canned soda when I'm with people in these places, and eat at home.