Reactions From Breathing In Gluten?

[LEO27]

Hello

I am severely allergic to gluten in any form; meaning that I can't eat any gluten or even be around it. If someone is baking around me I will get extremely sick. I have been this way for over 18 years. It's actually gotten worse with each time that I am exposed to gluten in the air, such as when I last came back from Salzburg. I had to work outdoors photographing the tourists etc and there happened to be many stalls that were making pretzels and other baked good that I found myself reacting very badly to.

 

I have never and would never eat gluten because of the severe adverse health effects that happen.

I'm wondering if anyone else has this or knows of someone who does?

I feel very alone because usually I only hear about people who are eliminating gluten by choice and not for medical reason or even Celiac people who sit eat gluten-free pizzas in a gluten filled place or can sit in a bakery eating a gluten-free muffin that was made in a gluten filled kitchen and I'm wondering how this is? 

 

 Please only answer if you are serious and don't take this gluten-free thing lightly.

 

I feel like the states (marketing, and advertising for restaurants) has made gluten free items for people who don't have to be Gluten free and the people with medical issues are being alienated by all this misinformation about what is safe and what isn't to eat and how to properly prepare the food we eat. I now can't just ask for gluten-free , but have to go through a long and in-depth explanation that I DO in fact react if they touch my food with contaminated gloves, utensils, and they do need to change the water that had gluten in it - and that It's not gluten free if the french fries are fried in the same fryer as the breaded items. Back when I was diagonosed in the early 90's I felt like this condition was taken serious, altho with les food options, but,still MUCH safer with the only peole talking about, being those who were similar to me or at least understood to some extent.

 

Anyone else or just me?

[1desperateladysaved]

Yes, this happens to me.  I walk through grocery stores staying as far as possible from the bakery and bread aisles.  I swell up if I walk too near a mini donut wagon.  I got sick while sitting in a kitchen to have my daughter's hair done.  Someone was cooking fish and I swelled up. You mentioned out that you have allergies. I just found out that for me it is because of super-sensitive allergies.  That isn't celiac (which I also have) but I can't tell the difference, because of having both.  I no longer eat out or in other people's kitchens.  I just take my own food and eat it in my own car or outside in the summer.  I have been told to try NAET desensitization for allergies.  I am planning to read a book on it and talk to more people about it.  Allergy desensitization shots are the medical option that I know of.  I have heard these are both ineffective and dangerous.  Some people say they were helped by them.  I would just like to be able to sit around other people eating without having issues.  I do know of a few others that must be this cautious.  I recently tried to ask my physician if I possibly made up these reactions, but she could see the extreme swelling of body tissues and rashes.  She felt that what I said and what she saw matched up.  I really was hoping that I wasn't seeing what I thought I saw!  It is amazing I think that my brain knows some things that I am not aware of.  I mean I can react to barley flour being in the room even if it is just sitting there in an open container.  WEIRD stuff.  I had heard peanut allergies were that way, but previously did not believe it.

 

One thing you may want to look into is a MAST cell problem.  Food allergies to things I was eating complicated my recovery.  Are your reactions getting stronger or remaining the same?  I am not sure of MAST cell and allergy connections, since I know little about them.  So, here I am 2 + years into gluten free and still have more studying and discovering to do.

 

You are not alone, but many people with celiac state that they do not react to gluten unless they eat it!  I need to say this so as newly diagnosed people with celiac do not get confused or upset about this.  Some of us do and you are the people I want to help, as I know what it is like!

[kareng]

Allergies are different than Celiac.  Celiacs shouldn't be eating foods that are likely contaminated with wheat -for example,  fries from a shared fryer.  However, Celiacs should be able to smell gluten bread baking or get some gluten on their skin and be fine.  For a Celiac, if there is a lot of flour in the air, then you may ingest some by breathing it  - it goes down your throat into your stomach, etc.

[LEO27]

thank you  1desperateladysaved. I will look into the MAST cell problem. Any information is great, and I really appricate it.

[LEO27]

What do people do when they are cross contaminated with Gluten?

[GF Lover]

Gluten will make you sick if ingested.  If food has contact with gluten it is the same as if you ate it knowingly.  The autoimmune system ramps up just the same.  Most glutenings come from cross contamination as we don't intentionaly eat gluten.  Recovering from gluten ingestion is different for everyone.  Some have a few days of issues, some of us need a month or so to recover.  Drink lots of water, rest and eat whole foods.  That's about all any of us can do.

[Robin Campbell]

You are not alone!! I have celiac disease  plus a wheat allergy.. I cannot be around any gluten at all either, I cannot go to resturants my home is 100% gluten free. I miss al ot of friend and family functions because of it.  If I am at a  store I hurry in  especially if there is a bakery there because i always react. It is def, hard to deal with and can be lonely. Sounds like to me you have a bad wheat allergy too? I cannot eat anything that has shared equiptment with wheat either. Good to know you are not alone!! have you seen a dr for this?

Its hard explaining to people how sensitive we are to it. If you dont mind what are your symptoms?

I wonder if there the same as mine? Some are fatigue, brain fog, body aches, breathing, light headed dizziness.

Hope you are doing better, hope to hear from you soon  ! 

[sunny2012]

I was diagnosed long before the blood test was developed. I react this way too!

Frankly, I don't really believe any CEliac should trust a reaction to decide that they were glutened. There are Celiac's who have little to no symptoms. And depending on where the damage occurs, it can take many months to years for symptoms to show up outside the intestines.