Airborne Gluten...

[Peaceflower]

hi all-

just checking back in for an update- went to an allergist and I'm not allergic to anything.. ugh. I think this is just going to be my life!

I can mostly just tolerate whole foods- and the entire family does fine as long as we are all just eating fruit, veggies, and meat. (and those Enjoy Life Chocolate chips!)

I start feeling crappy (headache and Gi probs) if I'm in the grocery store too long- they do have a bakery - I've considered asking when they bake, so I can plan to be there when nothing's cooking, but haven't done that yet.

I really hate how all social functions are around food.)

Whenever I go to social functions involving food I suffer for days afterwards... Because I was in the vicinity of gluten. I have found that being in places with good ventilation can be ok. I was at a dinner function in a hotel with really high ceilings and I didn't react. On another occasion, someone next to me ate a cracker biscuit and I lost my speech and couldn't walk. It is real, not imagined, for me. I cannot go into a supermarket without reacting, or drive the car if my husband has eaten bread in it in the last day or so. I get numbness, weakness, brain fog, memory problems, what I call sensory overload, speech difficulty, dizziness, co-ordination problems. I am not coeliac and standard testing does not identify this kind of allergy, so the tests have not revealed it. The allergy specialist told me to expect them not to show anything. She thinks my reaction is anaphylactic in that it sounds like immediate drop in blood pressure. I also get nausea and blotchy itchy skin, pins and needles and tingling. I had leg throbbing and neck itching and facial numbness, difficulty speaking after driving my husband's car to later discover that there were wheat coated peanuts in the driver's door, open. I do not have nut allergies.

[Peaceflower]

Allergies are different than Celiac. People do seem to have allergic reactions to airborne allergens. But that is different than Celiac Disease. Genetic testing for Celiac Disease won't tell you if you have an allergy. Nor will it tell you if you have celiac for certain. About 30% of the population has a gene for Celiac but only 1% of the population have celiac.

Yes, exactly my point. Doctors know about coeliac disease, but gluten allergy is less widely talked about. Is the genetic testing Mark talked about for coeliac disease? I didn't think it was. I was referring to testing for gluten allergy, which doesn't show up in standard blood and endoscopy testing for coeliac disease, or skin prick testing. Coeliac disease is too widely used to refer to any kind of gluten allergy or intolerance so that people don't even know what allergy means. I said I do not have Coeliac disease. I have had that confirmed. I do however have a debilitating gluten allergy.

[kareng]

Yes, exactly my point. Doctors know about coeliac disease, but gluten allergy is less widely talked about. Is the genetic testing Mark talked about for coeliac disease? I didn't think it was. I was referring to testing for gluten allergy, which doesn't show up in standard blood and endoscopy testing for coeliac disease, or skin prick testing. Coeliac disease is too widely used to refer to any kind of gluten allergy or intolerance so that people don't even know what allergy means. I said I do not have Coeliac disease. I have had that confirmed. I do however have a debilitating gluten allergy.

There really isn't a " gluten allergy". You might have a wheat allergy? I don't know much about what it takes to diagnose a wheat allergy. I understand that it can be hard to diagnoses food allergies. If you are seeing an allergist and the/ she thinks it is an anaphylactic allergy, then they have prescribed epi pens, I would think?

[Robin Campbell]

I totally understand!! I know I am very late over a year late! but I came across this article doing a google search for airborne gluten..

I have celiac disease plus a wheat allergy, I hope you have been able to see an allergist recently. I have been having reactions to wheat like this for many years including... headache, ithcing, rash,  tight chest, foggy brain, exhaustion, even to the point my body hurts when im around it for a long period of time. I do not go to restuarants I actually have to quite the nursery at my church because I have been having reactions there. Wheat is in everything! and if you have a wheat allergy you will def. get very sick. Shampoos, lotions, baby wipes, so many things! I actually got so sick on sun and pretty much was exhausted all day yesterday starting to feel better today. I really pray that you got help! I am finally getting insurance and hoping to be able to see someone about a possible gluten ataxia reactions. 

Hope this helps someone out!!! <3 

[Pame]

I always have issues of tight chest and itchy mouth  and throat in the bread isle.  I just did today, in their wisdom the store has the gluten-free crackers right next to the bread.  I have had issues before I ever turn the corner to the bread isle in a store I have never shopped in so I can't anticipate the bread isle and chaulk it up to anticipation on my part.  I was tested to see if I had a wheat allergy and it came back negative.  Not sure what it is but it seems some other folks have it as well and that somehow gives me comfort that at least I am not crazy.  I asked the manager if it was possible to put the gluten-free items at the end of the cracker isle so I didn't have to be right next to the bread.  They looked at me like I was a crazy woman but oh well I am getting used to that since msg is also a huge problem for me in it's many forms.

[BirdNest654]

haha, Pame, I was just at our local grocery store yesterday and bought some gluten-free bread- from the freezer section in the BREAD aisle. I was so irate that I was thinking of finding the store manager, too! Wonder who is organizing their food aisles?  

[1desperateladysaved]

I complained about airborne gluten from the beginning.  I just discovered that I am dealing with more than celiac.  I have some super-sensitive allergies and I would guess that gluten grains are among them.  The body is so complicated that it sure is hard sometimes to figure out what sort of response is going on.  Best wishes to all of you in discovery and healing.

 

 

Dee

[rbparshan]

Hi when I was in high school before I heard about celeac and wheat allergy whenever I had a lesson before lunch I would start not to feel well. I would start feeling gassy depressed extremely tired and nervous and start sneezing very loudly for about 10 to 15 minutes. When I was 18 I decided to lose some weight because I felt soo bloated althetime and would sneeze all day so I cut out bread for a week. When I got back on bread I started not to feel well and got all the above symptoms again So I went off it again and felt better but I would still react to something at home. I realised that it was the smell of hot bread or anything that contained wheat in it. And only would react to hot or warm bread not cold or room temperature.I also go out whenever things are cooking or baked or just simply in microwave or griller. This is very stressful for me and my family. Any suggestions? Thanks

[julissa]

I have been reading through all these super sensitive posts, and I definitely live this life also. I am wondering if anyone has found any way to help them have less reaction when they are out and about.  Has anything helped at all? I was looking into seeing a Naturopathic Doctor, but don't want to go down that possibly expensive road without opinions of whether it could help. I am thinking digestive support, I really don't know. I am at my wits end here. 

100% gluten, dairy and soy free for almost 3 years. I saw an allergist and am confirmed allergic to dairy and soy, and reacted to the wheat as well in the testing.  it would be so much easier to navigate life if all I had to do was not eat this stuff, but reacting to it on the outside has brought a new level of difficulty to my life. 

for example, I was babysitting 2 weeks ago at my daughter's house, something i do all the time.. I got glutened. the effects lasted almost 2 weeks. couldn't for the life of me figure it out, as I am careful and my grandkids have been brought up with me and my way of life. found out later on my daughter had been baking that afternoon. 

help!