Getting glutened from neighbor's cooking

[musichillpark]

I have celiac disease. People recently moved into the apartment next to mine and I've started having more symptoms. Yesterday and today were especially bad - major brain fog, pinching, neurological symptoms, frenzied state. The smell is coming from the lower cabinets. Strong odor when I open the cabinet doors. Tried applying sealant to areas on wall behind cabinets, but it's still coming in. Will have to seal off the base of the pipe to see if that works. Has anyone had a similar problem? I know that it's nothing I ate, the symptoms start shortly after I stand at the kitchen sink. I've had problems with airborne gluten before and suffered mold contamination last year. There's no mold in this apartment though. The lease is not up until December, so hoping to find a solution to this. Thanks.

[kareng]

You can't be glutened by smells.  Airborne gluten is usually something like flour that can be in the air for a short time when mixing it.  

I know that smelling things like bread baking can make people feel sick to thier stomach or anxious.  It's an understandable " mind trick" .  You know it's bad for you so you feel bad.  

 

Edit it to add:

 

Q

 

Can I get glutened from the smell of baked bread?

Even if some infinitesimal amounts of gluten are inhaled it’s inconsequential for persons with celiac disease because the amount will never reach the minimal threshold of 10 mg per day needed to cause harm. In addition, inhaling is not ingesting. Gluten needs to reach the small intestine to be toxic for persons with celiac disease. Inhaling gluten is only an issue if one spends a significant amount of time in an environment where gluten-containing flour is airborne, such as a bakery. June, 2013

 

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[SLLRunner]

Welcome, musichillpark!

If it's nothing you ate, perhaps it is an odor from a cleaning agent or something else coming from your neighbor's kitchen area.  Or, could you have a pipe leaking or refrigerator leak that has caused some mold?

Flour/gluten is not going to come through the walls of your apartment, and even if it did you would have to ingest it for it to cause damage. 

[musichillpark]

Thanks, but there is no question that it's from the neighbor's cooking. It's in the hallway as well.  Just had the spaces on the wall under the sink filled with expanding foam sealant tonight, so will see if that helps. Some celiacs are that sensitive as you'll read here:

 

[Midwitch]

I know its completely different, but my child with anaphylaxis to fish and seafood reacts to the smell of tuna. I was told this was impossible by a doctor at the hospital.  His next exposure caused full anaphylaxis and thank God I had his epi pen handy and the ambulance arrived quickly. I told the same doctor "I f%@king told you he reacted to tuna smell. A more senior doctor agreed he had as strong smelling foods like tuna or peanuts actually carry particles of the allergen  in the air, hence the strong smell.  He has since reacted when walking past the fresh fish area of a local supermarket (but thankfully that was projectile vomitting and immediate rash). 

 

So maybe, just maybe musichillpark is that sensitive. Alternatively it could be an allergy to something.

[RebekahLynn]

Does it smell like gluten foods or baked bread? Does it smell pleasant? 

[kareng]

8 hours ago, Midwitch said:

I know its completely different, but my child with anaphylaxis to fish and seafood reacts to the smell of tuna. I was told this was impossible by a doctor at the hospital.  His next exposure caused full anaphylaxis and thank God I had his epi pen handy and the ambulance arrived quickly. I told the same doctor "I f%@king told you he reacted to tuna smell. A more senior doctor agreed he had as strong smelling foods like tuna or peanuts actually carry particles of the allergen  in the air, hence the strong smell.  He has since reacted when walking past the fresh fish area of a local supermarket (but thankfully that was projectile vomitting and immediate rash). 

 

So maybe, just maybe musichillpark is that sensitive. Alternatively it could be an allergy to something.

But that is an allergy and Celiac isn't an allergy.  

I would think that the previous neighbors, and any other neighbors on the other side or upstairs or downstairs, probably cook with gluten.  If Celiacs react to the smell of bread, we would never be able to go to the grocery or walk down a street or eat at a restauruant or be near people eating a sandwich, or go to a baseball game, etc..   

[cyclinglady]

I do not think this is a celiac-related issue.  You have to ingest enough gluten to trigger a celiac response.   It could be that is either an allergy or something like Mast Cell Activation Disorder (allergy like symptoms triggered by medication, foods, smells, chemicals, etc.) 

What to try to exclude celiac disease?  Then go back to your GI and ask for a celiac disease follow-up blood test.   They are finding that even though people think they are gluten free (and they are experiencing symptoms), they are actually not due to being either non-compliant on their diets or they are getting cross contamination somewhere.   

How well did you actually clean your apartment before you moved in?

I can emphasize with the smells.  My cousin and I once rented an apartment.  New neighbors below cooked/fried with garlic daily.  The smell literally came up through the floor, I kid you not.  It was awful.  Luckily, they moved.  The managers told us they had never seen or smelled grease/garlic like that before and it took hours to clean.  They had to re-carpet and paint too.

 

[musichillpark]

My post might have given some people the impression that I was looking for confirmation that feeling sick from a neighbor's cooking with gluten is possible, but that's not the case. I already know it's possible. It's something I have had to avoid on a regular basis. This is true not only of me, but of a number of celiacs. I was just wondering if anyone had success sealing up their apartment in a similar situation.  I don't get sick eating at a table where someone is eating a sandwich or other gluten item, it has to involve heat - cooking, baking, frying... it triggers the auto-immune response.  I think sometimes people dismiss the notion because that level of sensitivity to gluten is a scary thought. Read below for more info:

 

 

[SLLRunner]

Nobody is saying you aren't feeling sick. Some people might be more sensitive to the smells of baking bread (you would be surprised if you found out your neighbors have a gluten free home. ) and other things and chemicals. Personally, I feel pretty ill if onion and liver are cooking, or other types of foods.

I'd like to suggest that it's smells and not the actual gluten causing you to feel ill. There is no way gluten (wheat, barley, rye) permeates walls and gets into your system and travels down to your intestines to cause damage. Thanks goodness, because if gluten lived airborne people who have celiac would not be able to go in the store, into bakeries, or anywhere else gluten is a norm (which is most everywhere). 

Just some thoughts. 

[Gemini]

I think everyone clearly understood your post.  The problem is that you seem to not understand how a Celiac reaction works.  I do know what you are talking about because smells that involve cooking and heat bother me also but it is a psychosomatic reaction.....and please do not become offended by that.  It does not bother me that it happens to me.  I view it as my body responding to foods that will make me extremely ill when ingested.  So, although you feel ill when you smell extreme gluten smells, you are not having a Celiac reaction.  It's either psychosomatic or you have an added wheat allergy which is causing you grief.  It could very well be an allergy problem.

It may be really hard to seal off routes where the cooking smells penetrate.  You just have to keep trying to find the way in and seal them off and hope it works at some point.  Odors can be really hard to contain, as you probably already know. If you all share a heating/cooling ventilation system, it will be almost impossible. I hope you can find a solution, other than moving.  Good luck!

[cyclinglady]

3 hours ago, musichillpark said:

My post might have given some people the impression that I was looking for confirmation that feeling sick from a neighbor's cooking with gluten is possible, but that's not the case. I already know it's possible. It's something I have had to avoid on a regular basis. This is true not only of me, but of a number of celiacs. I was just wondering if anyone had success sealing up their apartment in a similar situation.  I don't get sick eating at a table where someone is eating a sandwich or other gluten item, it has to involve heat - cooking, baking, frying... it triggers the auto-immune response.  I think sometimes people dismiss the notion because that level of sensitivity to gluten is a scary thought. Read below for more info:

 

 

Almost every celiac can tell if they have been glutened (some are "silent" celiacs and never have symptoms), but they are just making assumptions.  The only way to know for sure, would be to get tested.  I did this last summer.  I got glutened.  At least I thought I did.  I am really good about not consuming gluten.  I do NOT know what glutened me.  My symptoms were so different from when I was diagnosed.   The only way for me to know for sure or to at least rule out a glutening was to go back to my GI and get tested. So I did.  Results showed elevated antibodies that were even higher when I had been diagnosed 2-1/2 years earlier.  

You can assume all you want, but published science at this point, says that to cause intestinal damage you must swallow gluten.  

No offense, but how long have you had celiac disease?  When did you last get follow-up testing?

[Midwitch]

16 hours ago, kareng said:

But that is an allergy and Celiac isn't an allergy.  

I would think that the previous neighbors, and any other neighbors on the other side or upstairs or downstairs, probably cook with gluten.  If Celiacs react to the smell of bread, we would never be able to go to the grocery or walk down a street or eat at a restauruant or be near people eating a sandwich, or go to a baseball game, etc..   

I know. Thats why I said "its completely different". However we also were told it was impossible to have anaphylaxis from smells. The doctors are often wrong.  And yes, (again, although different), my poor kid reacts to people eating tuna sandwiches - (which I think should be outlawed in public like cigarette smoking)(, fish in markets etc. Often we don't realise there will be fish until he starts puking.  

 

Maybe OP has developed an allergy to something the neighbours are cooking - as it seems gluten would unlikely be the cause.  

[Mimi42988]

Gluten cannot be passed through skin, pores, or nostrils. It must be ingested to cause a reaction. A celiac has symptoms because of the antibodies produced once the gluten hits a certain part of your digestive tract. If no physical food passes that point it is impossible to have a reaction. I have been in the nursing field (most of them mental health nursing) almost 10 years as well as see a nutritionist since I am celiac. I recommend everyone see a nutritionist (One with celiac like mine is best)  at least 1 time after diagnosis because many of the things we fear are in our minds. 

[musichillpark]

Gluten CAN be ingested through inhalation, if it ends up in the back of the throat and as a result, ingested. I am quite surprised by the fixation on the word "glutened" here. If one regards glutening as only happening when you ingest a food containing gluten, fine. The bottom line is I and others become ill from people cooking with wheat flour and other items and it feels pretty darn close to how I've felt when I've been glutened from eating food, hence why I used the work "glutened". As far as "in your mind" goes, there doesn't even have to be an detectable odor to have a reaction. For instance I was in a shopping center once and there was no detectable odor of any kind. Starting having pinching, feeling off-kilter sensation...etc., then found out there was a bakery near by. I've also been in restaurants where I had no problem at all, simply because they had a good ventilation system and no particles entered the dining area.  Some misinformation going on here. No more posts from me!!

[AristotlesCat]

On April 11, 2016 at 5:06 PM, SLLRunner said:

Nobody is saying you aren't feeling sick. Some people might be more sensitive to the smells of baking bread (you would be surprised if you found out your neighbors have a gluten free home. ) and other things and chemicals. Personally, I feel pretty ill if onion and liver are cooking, or other types of foods.

I'd like to suggest that it's smells and not the actual gluten causing you to feel ill. There is no way gluten (wheat, barley, rye) permeates walls and gets into your system and travels down to your intestines to cause damage. Thanks goodness, because if gluten lived airborne people who have celiac would not be able to go in the store, into bakeries, or anywhere else gluten is a norm (which is most everywhere). 

Just some thoughts. 

I am no doctor, and definitely there is a lot of bad information on gluten out there, where people overemphasize its effects…but having celiac for years now and been following the literature my doctor gives me, my understanding is airborne gluten can impact celiac patients, it is just somewhat difficult and unlikely. Smells won’t do it, but particles of gluten in the air can (and that can happen with stuff like flour at a bakery for example). From what I was told, flour particles can linger in the air for a few hours, and if you inhale them, they can work their way down to your stomach. Again, probably not as bad as eating a contaminated food item, but I would not dismiss the notion entirely (though I certainly welcome expert opinions on the subject). I know there are case studies for instance of people who work with wheat as farmers and just being around it, breathing it in, is enough to trigger celiac symptoms.

 

I have to say though, this case seems somewhat unlikely. Unless there are huge gaps connecting your apartments and they are cooking a lot with flour and it is migrating into your apartment that way, the smell alone should not be enough to trigger a response. Maybe we are missing some details though. It isn’t the smells, it can only happen if there are particles of gluten in the air itself (so you need something like flour where it can become airborne).