Anyone Highly Air Sensitive To Wheat Here? Lifestyle/adjustment Questions

[Wheatless32]

Hey guys, 1rst post,

 

I've got Type 1 Diabetes(10 years), Sleep Apnea(2ish years), and Wheat and Soy Allergies(blood test positive for celiacs 5 years ago), and early in 2014 I felt I was reacting REALLY strongly to wheat in the air, which I know gets people sick from, but I feel like I am extremely sensitive. So I got a skin-poke-test for allergies, and while I wasn't positive for much (usual mild dogs/cats/ and a few trees/grasses), I did test positive for wheat and soy on my skin. As of about 6 months ago I had to stop going to grocery stores during the day(I would come home after and be non-functional sick for hours+days after), and now I must order my groceries (almost 2x the price! ouch) from safeway delivery, and avoid grocery stores and any restaurants completely.

Does anyone else feel strong social isolation? It used to not bother me, but now I avoid parties/large gatherings that used to give my social life meaning, unless I profit in a non-fun($, networking) way from it. Now it's stressful to go over to someone's house unless they are one of those awesome people that gets how difficult it is. I have no way to go to Holiday parties, I can barely share meals with my family, staying anywhere but my own home is tiring, and finding work has become difficult. I'm tired of explaining it to people and that having to be my identity, but if people forget, I get sick.

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I'm struggling to replace the social function of bonding over food/indoor spaces with people in my life. I do hang out with people who like cars, which is a fun outdoor activity, but an expensive hobby, and they regularly cruise to restaurants. I used to play music (10 years in/out of bands), but practice rooms and people drinking beer around me is no longer something I can tolerate, and going to bars/restaurants to play wouldn't be much fun for me.

 

I do have a very thick dust mask I wear occasionally, which has allowed me to do some photography work in restaurants with a massive (near zero, but definitely not perfection) reduction in reaction, but it's exhausting to breathe through. Conversations are difficult with people as they can't see most of my face, and I am hard to hear with it on. Also it's tiring to get judging and frightful looks when I wear it, and makes me want to be even less social.

I'm currently pursuing disability assistance from the government and this will likely help fund more fun/creative projects, and free up some funds so I don't feel like I'm in a downward financial spiral struggling to eat. Better food will probably mean more energy, and I'm hoping will catalyze my life a bit. I am also working on getting a sleep apnea surgery, which should give me some more energy, and possibly eliminate the need for me to use a mask(which is really sexy to explain on a one of the first few dates).

I should add that I am 27, so as I grow older and my friends have less and less time, it's becoming pretty clear how much convenience plays a role in the strength of friendships, as most people don't want to give up or alter their fun group activities (parties, group events, etc.) to include me, and I can't blame them, that makes life more difficult for them with very little gain. That, and my lifestyle is becoming less and less like that of my successful friends from previous years, as they move forward in careers, relationships, I am struggling relate to them as I try to survive and function with my health issues.

 

I am considering moving farther away from my current living situation which is near a crowded area and restaurants, but feel I would only isolate myself further and spiral into a dark place, however rationally it makes sense for my overall health.

 

For the time being at least I am pursuing freelance photography and having some mild success despite meeting so few new people.

Just looking to see if anyone has been down a similar road and has advice/tips for someone who has to avoid any sort of food/group gatherings at all costs.

[LauraTX]

Welcome to the forum!

 

So, I read all of your posts, so you have Celiac disease and a wheat/soy allergy?  That is definitely a lot to deal with.  Having the actual wheat allergy on top of Celiac disease definitely complicates things.  While there are some people with Celiac disease who feel they get ill from just walking past the bakery at the store (you can converse with those people exclusively by using our super sensitive section, which I recommend for any other airborne conversations), the majority of Celiacs do not have symptoms to that degree, since gluten has to get into their mouth to cause a problem.  So while a person with Celiac disease can handle, say,  a piece of gluteny bread, and wash their hands and be fine... someone with a topical wheat allergy obviously can't.   Do you live in the US?  If you don't, go ahead and put that on your signature line (along with something saying you have an actual wheat allergy) so we can tailor our answers to you.  Most product info here on the board is for the US, although we have a good number of Canadian and other international members who give great information.

 

Not being able to participate in the societal norm of having food-based gatherings can be a huge drag on your life.  My family is the "Omg you need to eat something!" type and even though they mean well, I know they feel a little slighted when I leave the gathering early to go home and eat.  A lot of us will bring our own food to things, but given how severe your allergy is, that may not be the best option if you can't even go somewhere.  But if there is a place you do feel safe going, bring your own food and don't apologize.  I actually keep a doctor's note for when I go to places where outside food isn't allowed in case they give me trouble.  

 

You just have to create your new normal, invite others in, and sadly, leave behind those who don't feel the need to do simple things to not make you sick.  If they aren't willing to do something so simple to avoid hurting their friend, then they aren't a real friend after all.  Leaving behind old hobbies and having your life flipped upside down by illness can be a very bumpy ride in life.  Some of us here have talked with counselors to help cope, especially when friends and family are extra isolating, other illnesses are involved, and depression sets in.

 

I actually understand the mask wearing thing.  I have a Primary Immunodeficiency disease, which means I naturally lack part of my immune system.  If there is a flu going around or I am someplace with huge crowds, and when I fly on airplanes, I keep a mask in my purse and sometimes wear it to protect myself because those germs get to me much easier than the average person.  People will freak out and be so rude, so I only wear it if I feel it is absolutely necessary.  Luckily I work from home,  keep my distance from strangers, and don't do it very often.  Especially when the ebola thing was big news, so many ignorant people out there I wouldn't dare wear it even though it was flu season.  LOL  I don't get out much, either.  Haha.

 

Moving away from your current area may be something to put off for a while so you can maybe work on trying to increase your level of happiness so you don't end up isolating yourself and increasing levels of depression.  However, if you feel that your immediate area is a source of stress and illness, then definitely get out of there.  I am around the same age as you, and I also understand the difficulty of avoiding comparing yourself to other people, having to give up a successful, lucrative career in the medical field that I worked so hard for.  Remember that their relationships, jobs, and families that look perfect from the outside are causing them to probably be stressed out, that there is a 50% chance they will be divorcing, and their kids are not the perfect angels they make them out to be on social media.  Try your best to learn to love yourself and your imperfect life, and be grateful for what you have and what you can do.  That, of course, is a struggle on a daily basis, but if you can increase the number of good days and decrease the number of bad days, then that is winning

[Wheatless32]

Hey, thanks for the amazingly detailed response - The multiple illness thing's a pain! If I had to choose, I'd get rid of my food allergies, from 2005->2012ish despite having Type I Diabetes nothing really slowed me down, and I didn't really feel any different until I had to start avoiding airborne wheat/soy.

 

I used to see a counselor, until I realized the bagel place across the street was making me sick - although I felt like I was just going in and saying the same stuff the past few weeks I went, and don't really miss it much. Hence why I joined this forum, I can talk to people that also have those really specific weird experiences like dealing with having to wear a mask, and get better perspective .

 

It's great to hear from someone else dealing with the mask thing, I'm getting to the point where I almost don't care if I have to wear it, but I also notice that those feelings don't go one way, and makes me apathetic to what other people think in many ways, which is kind of tough and makes it really hard to connect with others.

 

 

I think a large part of my social isolation feeling comes from struggling to have any sort of dating prospects - I don't miss partying tons. At this stage in my illnesses it doesn't make sense to bother at all with anyone who isn't already gluten and soy free, which massively shrinks my dating pool. That coupled with being tired so much and struggling with income, makes me on paper a pretty bottom-of-the-list find unfortunately, despite being somewhat attractive and not having any trouble getting dates the first year I was diagnosed, before it greatly impacted my life. I had 2 girls over last year (seperate events), one after several dates, and when they saw the sleep apnea mask (which I don't wear if someone stays over), it looked like their attraction to me dropped like a rock - I think the less visible an illness is the easier it is to not see someone as sick, and then seeing the apparatus made it real. So it's another case of, well I guess I just have to find a REALLY good one that's understanding, and it will automatically filter out crappy people, but now I feel like, how do I possibly meet anyone? I guess it's just luck and patience, but rationally thinking it not exactly an optimistic situation. Fortunately I do get out and shoot photos/videos occasionally, at least I have that as a possible connection to new people/things.

 

I should add I am USA based, and have learned almost every available food option there is in the local area for me for 75 miles, so making/finding food isn't an issue, but being able to go to new places or share things with people is.

[ravenwoodglass]

Welcome to the board. It sounds like you are having a real rough time. Having an actual allergy to both wheat and soy on top of celiac is tough. Did your allergist have any advice on how to handle the allergy part of it so you are no so restricted? Perhaps a med you could take before an event where you might be exposed that could stop the histamine reaction? If the doctor hasn't brought it up perhaps ask as the doc may not realize how much this is impacting your life. I had multiple allergies when I was first diagnosed and some of them resolved after my system calmed down as I healed with the celiac. I hope your reactions calm down a bit more so life is a little easier for you. 

[Wheatless32]

Welcome to the board. It sounds like you are having a real rough time. Having an actual allergy to both wheat and soy on top of celiac is tough. Did your allergist have any advice on how to handle the allergy part of it so you are no so restricted? Perhaps a med you could take before an event where you might be exposed that could stop the histamine reaction? If the doctor hasn't brought it up perhaps ask as the doc may not realize how much this is impacting your life. I had multiple allergies when I was first diagnosed and some of them resolved after my system calmed down as I healed with the celiac. I hope your reactions calm down a bit more so life is a little easier for you. 

Unfortunately with the Allergist I saw, I had to press her to put wheat and soy on the test. She's basically a crappy doctor, she might be good on paper but I need to find one that actually listens to patients. She was only interested in treating my grass/pet allergies, which really don't affect my life.

The more and more I look though, I find people that go through similar experiences as me, and find evidence about people ingesting gluten through the air and getting sick, so I don't really think I am that different, the symptoms are all celiac based, I just have comorbid conditions that magnify the experience of the symptoms.

[bartfull]

Keep in mind that flour dust in the air is a problem for celiacs, but just smelling cooked gluten (such as a cake someone near you is eating) cannot gluten a person as long as they don't spill crumbs into something YOU are eating. So if you are reacting just by going to the grocery store or being in a room where people are drinking beer, it is the ALLERGY that is causing the reaction, not the celiac.

[Wheatless32]

Keep in mind that flour dust in the air is a problem for celiacs, but just smelling cooked gluten (such as a cake someone near you is eating) cannot gluten a person as long as they don't spill crumbs into something YOU are eating. So if you are reacting just by going to the grocery store or being in a room where people are drinking beer, it is the ALLERGY that is causing the reaction, not the celiac.

It's a spectrum, I get celiac symptoms, not allergen symptoms.

How is food being cooked not a problem? Does wheat magically become non- airborne even thought it's a crumbly substance that's been heated? (No) I don't think that's the case, cooked wheat is just as bad as uncooked wheat as far as I have learned. I am having difficulty seeing how cooked food solves the airborne problem. Smash a cracker over a carpet and you'll get a good idea of how cooked wheat travels so easily.

It says in your profile your intolerances are gone, so you're not currently celiacs or ever truly were? Could have possibly just had a vitamin deficiency like my friend who was temporarily upset by gluten, as celiacs as far as I know is uncurable. Also it took 5 years of avoidance to get to the place I am today, so I don't really expect you to have dealt with extreme sensitivity at this level, the first 2-3 years were much,much easier than the past 2.

 

Also if you take a look in my profile, it makes sense that my system is highly sensitive due to comorbid conditions with sleep issues and Type I Diabetes, and the symptoms would be amplified in my case.

There are lots of cases of non-flour sources of airborne celiac issues, go check out some of the other threads like the one about Horse Feed if you want to see some more examples of airborne issues.

 

Here's a good one : Open Original Shared Link

[LauraTX]

Wheatless, while I understand your condition is real for you, you cannot apply your experience to everyone with Celiac disease. The link you post says there is anecdotal evidence.... anecdotal evidence is the lowest on the totem pole of the scale of reliable scientific information.   Also, the most specific example they give is of someone who is a farmer and is dealing with wheat in an enclosed space all day.  Of course it was getting into their mouth in that situation. As in the case of odors, those molecules that are entering your nose are not large enough to contain gluten. Smelling the odor of someones beer is very different than walking into a bakery where they are dealing with flour all day and it is settling all over everything and in the air right after they did some flour mixing.

 

So, overall, while you have these symptoms, please do not go around lecturing everyone else that they just haven't figured it out yet that they are as sensitive as you.  Your case is unique, so please treat others with respect when they do not have the same issues you do.

[cyclinglady]

Have you been tested for refractory celiac disease? The gold standard for a celiac disease diagnosis is an endoscopy with six or so biopsies after positive celiac blood tests. That is not always possible for various reasons for many folks. Those folks often find healing with the gluten-free diet. But if you are still struggling after being gluten free for five years, then I would recommend a GI consult.

Perhaps it is time to find out what is really happening inside your gut.

[LauraTX]

Have you been tested for refractory celiac disease? The gold standard for a celiac disease diagnosis is an endoscopy with six or so biopsies after positive celiac blood tests. That is not always possible for various reasons for many folks. Those folks often find healing with the gluten-free diet. But if you are still struggling after being gluten free for five years, then I would recommend a GI consult.

Perhaps it is time to find out what is really happening inside your gut.

 

This is actually a very good recommendation.  I second this.

[Lisa]

You said you were USA based.  What is your county of origin?

[bartfull]

No Wheatless, look at my profile again. It says my intolerances to everythingelse EXCEPT gluten are gone. I DO have caliac. And A piece of cake does NOT become airborn the way flour (or dust from animal feed) would.

 

Now YOU said that you DID test positive on a scratch test for wheat ALLERGY.

[weluvgators]

Hi, I just want to lend my support and understanding for airborne wheat issues.  We are a celiac family dealing with wheat/gluten allergy.  It has been a long journey for us, and we moved to Australia in part to enjoy the benefits of fantastic gluten free labeling.  The impact of the superior gluten free labeling here is astonishing.  Other people find it easier to accommodate us because they can easily walk into any store and buy gluten free labeled food with confidence and ease.  It has increased the social support that we receive immensely.

 

As for the wheat allergy aspect, I also have issues with social settings.  My theory is that it is the aerosolization of the gluten foods that others eat when they talk / breathe.  I find beer to be one of the worst, but it is also when I would tend to speak closely with others in a social setting (you are further from people when sitting at a table versus trying to lean in and hear people better in the midst of a noisy crowd of drinkers).  One of the ones that caught me off-guard one day was steaming of wontons at a food court.  It took me a bit to figure it out!  Unfortunately/fortunately for me, these types of exposures affect me quickly in a more traditional allergy sense in that my respiratory system becomes impaired.  Fortunately for me, allergy action plans have worked well for managing/reducing/minimizing these issues - I use Ventolin and Zyrtec for managing complications from exposures.

 

We have a lot of examples in our family of airborne impacts from seemingly innocuous exposures for a celiac that have created systemic issues in our health.  We are very cautious now and vigilant about eliminating these types of exposures.  We also try to keep up with a super sensitive celiac that does a lot of scientific research to help in her own healing.  While she doesn't have the airborne issues that our allergy induces, I have found her experiences invaluable in improving our own journey.  She has been increasing inulin in her diet to increase the prebiotic content and help the good intestinal bacteria colonies flourish.  She has been happy with the improvements in her tolerance utilizing this approach.

 

I know it is a struggle.  If you haven't tried any allergy medications, you can try to see if it helps you cope when it gets bad . . . or when you just want to enjoy yourself in a hazardous situation.  I also try to pick activities that are low risk - some restaurants are naturally lower in gluten than others.  And some friends are more understanding than others (we have certainly had instances where we have requested our whole table to be gluten free).  Have you tried any gluten free support groups in your area?  They might coordinate social activities there that would be gluten free!  One other benefit of living in Australia has been that ciders are quite popular and readily available, and many/most of them here are gluten free.  And I have been out with people where the entire table was drinking gluten free cider (not by my request either)!

[weluvgators]

I also wanted to add that I have used Allergic Girl coaching services to help us in our journey.  She offers food allergy counseling, and we have always  utilized her services via phone/video tools.  It is really nice to be able to speak with a counselor that understands the social implications that allergies can create.  She has a book that you can read as well that addresses social issues in managing food allergies (Allergic Girl by Sloane Miller).  You can probably find it in your library even.  She offers many ideas and strategies for living well with food allergies.

[Imarmole]

Hi, I would just like to say that I am having similar issues with social situations due to experiencing reactions from simply being around gluten-containing foods. Unfortunately, I went gluten free before any tests were done so as far as I know, from doing an elimination diet, I have a gluten intolerance. Shortly after going gluten free I felt like I didn't think it was possible for me to ever feel again: like myself and experienced renewed vitality, energy, happiness, and restorative, restful sleep. All that changed after about a year of going gluten free, and eventually soy and dairy free due to similar symptoms. I find myself becoming increasingly sensitive to gluten from just being around it but my symptoms are the same that I get from ingesting gluten, which I am also very sensitive to. I used to work at an after-school program where they had us in the cafeteria giving kids wheat based snacks and that was a nightmare, I ended up losing that job. I experienced brainfog, fatigue, muscle stiffness, insomnia, GI distress, headache, joint pain, depression, and anxiety daily. From reading posts on the super sensitive section of celiac.com I am now thinking that I might have an allergy even though the symptoms I experience after being in a restaurant, Grocery store, or social gathering for too long are the same as the sensitivity symptoms. In other words I am not experiencing traditional allergy symptoms. I would also add that it takes about 6 hours for the reaction to fully manifest but I will start to feel the beginnings of a headache instantly. That may be a sign that it is an allergy after all as well as an intolerance. Anyway, I don't know what I was getting at besides sharing my experience because it is very frustraiting going to social events, especially around the holidays. I realize that some people try to be accommodating but it is hardly ever to the degree to prevent me from getting sick since I am so sensitive now. Not just that but also work and in my case half the time not really knowing whether it was something I ate or spending time in places/homes where gluten is prevalent. I guess the only thing that I'm thankful for is that my symptoms, when glutened, seem not as severe as other Celiac's but I find that my quality of life is still greatly impacted.