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A Few Unrelated Questions About celiac disease/ncgs

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Hi All,

 

I am a teenager who, due to symptoms both gradual and immediate in onset, suspects celiac disease or NCGS (unfortunately, I didn't get the blood test before cutting gluten). I've been gluten free for 2 months, and I have seen a significant improvement in my symptoms, primarily energy (which has skyrocketed) and digestion (which has improved, but is still subpar). My most alarming symptom pre-elimination was shortness of breath, and that too has alleviated over the past months, yet is still a concern.

 

I have a few questions I've developed over the past few months:

 

1. Is recovery from celiac disease or NCGS usually steady, or are there ups and downs? My experience has been one characterized by periods of significant improvement (almost back to normal), which only days later give way to a relapse back into my prior symptoms. The best example of this is my breathing, which varies significantly day to day. I'm very compulsive about managing CC, so I don't think that it a major factor, but it's certainly possible. (My diet is currently only fresh fruits, roasted veggies, and a variety of animal protein sources).

 

2. Regarding CC, I'm wondering about my family's convection oven. I'm the only gluten free member of the family, so my gluten free dishes (e.g. roasted vegetables) are often in the oven with gluten dishes (e.g. garlic bread). How concerned should I be about this? 

 

3. Also, what is the deal with inhalation of gluten? If I'm talking with somebody who recently ingested gluten, should I worry if they breathe right onto my face? 

 

I would be so appreciative of your thoughts on any or all of the above. Thank you so much!

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Welcome to the forum!  It seems you have read up and familiarized yourself a bit so that is really good.  You may want to get a formal diagnosis some day, just keep it in mind for the future when you have means to.  As for your questions...

 

1. The recovery from celiac intestinal damage can take a while.   Everyone is different, but usually there are a few good months of ups and downs before you start to feel way better, it is a gradual thing.  Being very strict in the first few months helps a lot.  NCGS people can be a little different, but it too can vary.

 

2. With the convection oven, the fan doesn't blow extremely hard, so as long as there aren't a lot of fine loose crumbs or flour particles that can come off the food, I wouldn't worry too much.  Just maybe keep your item on the top shelf, and if there is something that may blow around, you can cover one of the items with foil.  Also, if you ever need to cook something gluten-free on the oven rack itself, put foil down first.

 

3.  When it comes to how you get gluten into your digestive tract, it has to go into your mouth.  The breath of someone who recently ate it is not a problem at all.  If you have a significant other and kiss them right after they ate gluten, then that can be a problem.  The only time where you may want to be careful is if you are cooking, or in the kitchen when people are cooking with flour or a baking mix that can go into the air.  If you think about what happens when you handle flour too rough and it coats everything in the immediate vicinity, that is how it can potentially get into your mouth when it is being handled near you.

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There was someone who posted on this site I believe, and I've read this elsewhere, that being in a bakery, without eating anything makes them sick. I'm not sure how that works, but it happens.

 

If it were me, I would have my own convection/toaster oven that only you can use. I think I've read that there are others who do it that way. Maybe it's not necessary but I always say better safe than sorry. Especially if it's older and has had lots of use. That's just my opinion.

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The only time I worry about breathing in gluten is when there is noticeable dust in the air. That means bakeries. I also left a restaurant when they sat us at the bar where they were making pizzas right on the other side of a low counter. If I had been seated further away, the dust in the air probably wouldn't have been a problem, but I'd still have to think that any food and maybe even the beverages from that kitchen would have had a high likelihood of contamination.

I had major problems in the last few months of my cat's life when I had switched to wheat cat litter but before I knew gluten was a problem for me. I basically had a sinus infection for six months but had no idea why. It was a few months after she died and after I had gone gluten free that I was doing some extensive cleaning in the area where her litter box used to be and put two and two together after getting glutened with no apparent cause. 

So yes, if gluten is in the air, my sinuses will go insane. But my reaction to any sort of glutening has lots of sinus symptoms.

But I don't worry about walking past the bakery counter when I'm at the grocery store. Granted, I wouldn't walk right up to the counter and start touching everything, but in such a large space with so much air movement, dust in the air is not a problem.

I probably wouldn't cook gluten-free dishes in the convection oven at the same time as gluten items unless the dish was covered primarily because of the fan, but I don't have a shared kitchen so I don't really pay attention to these issues. 

I wouldn't worry about anyone breathing on you but I wouldn't kiss them after they just ate gluten. I still love the smell of gluten-filled baked goods. If a plate of cookies were sitting on the table in front of you - not a problem. But if a cookie food fight broke out, I'd run for cover.

I don't know anything about breathing problems so I'll leave that for someone else to answer.

My best advice would be to be cautious but not paranoid and employ common sense whenever possible so that you don't start making your life more difficult by taking unnecessary precautions.
 

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I walked into a Panera Bread after being Gluten Free for about 6 months, I was only planning to have a coke and meet a friend there, I had to leave and we had to make a quick change in plans.  We ended up at a PI Wi near by.  My eyes watered, I felt almost like I could not breath.  It was awful.  I could not understand feeling that way just breathing it, but I did.  I got out of there fast.  I have not gone back since.  I have been in other restaurants where I know they are baking, but not a bakery.  Do not like the bakery in a grocery either, I avoid it.  I did not realise a problem before going gluten free.  Only that my eyes watered a lot and I had terrible allergies.  Well, I do not have terrible allergies anymore and my eyes do not water a lot.  There has to be some connection. 

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if there is flour in the air and you breathe it in, it goes into your mouth.  at some point, you will swallow some (ingestion) and that's how you will get cc'd by flying flour.  

 

i use my (shared) oven for baking gluten-free dishes and non gluten-free dished at the same time.  it is also convection.  like laura said, if you're baking something that needs to be uncovered, then put the gluten-free stuff on the top rack.  i bake (wheat) pizzas for my grandkids directly on the oven rack, so if i put my uncovered stuff on the lower rack, there's a chance some stuck on gluten will end up in my stuff.  if you don't have a choice of racks, just cover it with tinfoil.  i also bake gluten-free pizza on upper rack but cover it with tinfoil first.  i use a shared toaster oven but i cover the rack with foil first.  if all you have is a regular toaster, you might want to get one just for you or use toaster bags.  

 

two months isn't very long to see consistent results from the diet, so have patience, young grasshopper :)

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