What Do You Do About Feeling Paranoid Over Gluten?

[T.H.]

I'm on a trip right now, the first one since I've been diagnosed AND actually been glutened so I know how awful it feels. I'm amazed how nervous I've been feeling just being in a hotel room and out of my gluten free house. I know they clean it, but I feel like everything I touch in here is a potential gluten hazard, and I hate that. Anyone else get this? Worried about gluten this much?

I'm very, very sensitive to gluten, but still, I feel like it must be ridiculous to be this worried. I had NO idea I'd have this problem. I've been very comfortable with the level of safety in my own house, so this is just...bizarre.

I'm washing my hands before I touch my food, and after i touch the microwave, and after I touch anything that doesn't belong to me. I don't feel comfortable this entire trip, trying to be aware to never touch my mouth, watch what everything I own touches and what I touch and just...dang it. I was hoping I would enjoy this trip! I made all my own food and everything (I haven't managed to eat at a restaurant yet without getting glutened, even ones that are highly recommended by other celiacs and were very careful.)

And the worst thing is, as careful and nervous as I've been...I still got glutened anyway today. Vertigo and nausea, the usual. It's just so frustrating. I feel like being this paranoid is too much, but even BEING this paranoid, I still got sick. I'm worried that next time I travel I'll be even MORE nervous because I know this trip I couldn't keep myself safe. I don't want to live like that.

Not that I mind being careful. I don't mean that. If it means feeling better, I'm willing to do whatever I need to short of murder, at this point. But I don't want to feel so worried about what I need to do to stay safe, I guess is the problem.

How do you deal with this? Anyone feeling this nervous about being away from a gluten free safe zone? Especially anyone who's very sensitive as well? Does planning very well help you feel any better? Setting up a gluten free spot in the hotel room/host house? More practice? Does it get better with time? I've only been gluten-free for about a year now, myself.

Any ideas would be MOST welcome.

[ravenwoodglass]

I am going to be facing this myself soon. I am just as nervous about it as you are. I am getting a room that has a kitchen but I am going to bring my own toaster, cutlery and a baking pan and foil. The area I am going does have a lot of restaurants that have gluten free menus but I am to concerned about the 6 hour drive home to want to chance it. As far as the room itself goes I will likely be rinsing off my hands as much as you are but I do that at home also as force of habit. Since I know I am likely to be really paranoid I am going to make very sure I take my anxiety meds with me to prevent having any panic attacks. While I am nervous about the trip I want to make sure I enjoy the time, my DD's wedding, and the people that are there. Hopefully with all the planning all will go well. I think the planning is the key to being safe.

Hopefully others who have done some traveling will chime in with what worked for them. I could use the advice and reassurance myself.

[sahm-i-am]

I remember going on an anniversary trip with my husband 2 months after being diagnosed. I was a nervous wreck. In fact, the hotel kitchenette freaked me out so much I couldn't use it! It was fine and clean, nothing wrong with it from a non-Celiac point of view, it was all in my head. But I ended up eating at great restaurants that helped me navigate their menus and we had a great time. My cooler of snacks and bread helped tremendously. I had a list of places and foods that were safe and I never had any problems.

I hope you both have a great time on your trips. I know how you feel. I am getting ready to go to a beach house rental for a week with family. There is more anxiety having others in the kitchen and possible CC than when I am on my own, in control myself. But, I will be hyper vigilant and be alert constantly. And I'll just have to keep my dad and grandmother out of the kitchen!

[sandsurfgirl]

You have to find a way to control your fear or this disease will ruin your life and it shouldn't. You got sick from eating something that had gluten in it, not from touching doorknobs and the hotel room.

Frequent hand washing. Wash hands before you eat. Don't touch your mouth (it will give you colds anyway.)

If you can't control the fear then maybe get counseling. Celiacs can lead a full and active life just like anyone else.

I get sick from trace amounts of gluten. I eat out LOTS, maybe 4 or 5 times per week some busy weeks and I've only been glutened a few times from it. It sucks being glutened but I'll take the risk in order to have a life. I've only been glutened badly once. The other ones were minor trace CC and symptoms went away after a few hours or so.

I've stayed on hotel rooms a few times since being celiac and used their kitchen and microwave with no problem.

Enjoy yourself! Life is meant to be lived. Don't let celiac put you in a bubble. It's not life threatening like a fatal peanut allergy where you would have to use an epipen.

[polarbearscooby]

This is becoming my life. I'm starting to be paranoid. It's been a year and I can't believe how good I feel when I'm off gluten that I'm afraid of gluten. I'm afraid of getting sick. Looking for a bathroom, always having to know where the closest one is. I hate that. And I seem to be becoming MORE sensitive than I was last year! And I was already very sensitive.

I got sick after Applebee's the other day, and that's left my feeling awful. Now my dad says I can't eat out anymore. And I can't do that.

[anabananakins]

I'm currently on a 4 week trip, about 10 days in. It is hard but I won't let it spoil my enjoyment. I wasn't worried in my hotel room because I figured they clean and the hotel staff aren't eating on the job. The first 5 days in a hotel were fine. I had a lot more trouble on the train, I was in a sleeper and meals were included and I didn't want to go 2 days just eating snack foods so I did my best to eat in the dining car. I think the steak + baked potato was fine but I got glutened the next day with omelette and then the salad for lunch made me feel worse. It's just impossible to avoid cross contamination. So that was disheartening. All up I felt pretty awful for about 2 days and not great since but

I'm lucky that for the most part my reactions are relatively sudden and shortlived (though the return of the ataxia was pretty rough, I felt like a drunk trying to navigate the narrow aisles in the drug store. Still, it was also quite validating since I'm not diagnosed and I do sometimes wonder.

I'm now at a friend's place and she and her husband are being great but I do feel like a pain in the neck having to point possible problems all the time. But I have my own food and she's not the cooking type so I don't have to worry about not being able to eat her food.

Eating out has been pretty good. Thank god for Chipotle burrito bowls. Ben Pao in Chicago were fantastic. I ate at a mexican place and that was fine too. Unfortunately I got glutened by In n out burger the second time so I'll ask for no sauce next time. But I've had way more success than problems.

Sometimes I wish for the ease of being in my own gluten free home, but I refuse to miss out on travelling and seeing friends far from home. I could stay home and be safe but that would be dull and lonely. I'm gluten free so I feel better. Not travelling would make me unhappy so what's the point? I don't want to go to the other extreme and be sick and careless but I think there is a happy medium. Good luck to you and I hope you feel better soon.

[SaraKat]

Touching stuff doesn't bother me since you can't get sick from that. Going out to dinner is just a pain, but just order everything plain and you should be OK. I was at a brunch all yesterday afternoon around all non celiacs and it was fine. The hostess made my plate totally separate and it worked out wonderfully.

[heatherjane]

Being paranoid is understandable given that all we have to watch out for, but try not to let this disease dominate your life. I've dealt with the paranoia by remembering these points (which I'm reminding myself of right this minute, after cooking my lunch in a gluteny microwave):

1) We live in a world where gluten is everywhere, so you're bound to get it unless you live in a bubble.

2) Be aware and prepared for situations where gluten may be present, but don't let the fear of it rob you of a wonderful experience, such as visiting somewhere you wouldn't usually go. Check your food, bring snacks/meals, and wash your hands.

3) Take a deep breath; this disease is for a lifetime. Even though at times you may not feel it, you're further down the right track than you were at first diagnosis, and you're going to get better at dealing with the tricky situations. Sometimes it just takes trial and error. Accidents are going to happen, and others are going to make mistakes while trying to "assist" you. This is not saying that we should be non-chalant about everything, but don't let fear steal your joy.

[T.H.]

I hope your trip gores very well for you - I'm in the same boat almost exactly! 7 hour drive for this trip, where I'm the only driver. I think the extra planning sounds like a good idea. I spent lot of time planning out the MENU - cooked like a madwoman for me and the kids both, since we're all gluten-free and my daughter and I are very sensitive. But I didn't really think too much about having a space for our stuff that would be gluten-free, or planning for foods that would be easy to keep separate and gluten-free in the hotel room.

I think planning will definitely need to be more thorough next time! But at least it's over, I'm back home, and in a week or two I'll have recovered pretty much, phew!

Thanks for the reply, so much! Nice to not feel alone some times, you know?

I am going to be facing this myself soon. I am just as nervous about it as you are. I am getting a room that has a kitchen but I am going to bring my own toaster, cutlery and a baking pan and foil. The area I am going does have a lot of restaurants that have gluten free menus but I am to concerned about the 6 hour drive home to want to chance it. As far as the room itself goes I will likely be rinsing off my hands as much as you are but I do that at home also as force of habit. Since I know I am likely to be really paranoid I am going to make very sure I take my anxiety meds with me to prevent having any panic attacks. While I am nervous about the trip I want to make sure I enjoy the time, my DD's wedding, and the people that are there. Hopefully with all the planning all will go well. I think the planning is the key to being safe.

Hopefully others who have done some traveling will chime in with what worked for them. I could use the advice and reassurance myself.

[T.H.]

Oh goodness, that would stress you really didn't need, goodness! I'm so glad though that you had some safe places to eat that turned out well.

Ha, I know what you mean on the relatives - I have to keep my Mother in law away to keep the food gluten-free and safe, LOL. Good luck at the beach house!

[T.H.]

>>You have to find a way to control your fear or this disease will ruin your life and it shouldn't.

You know, that was the weird thing about all of this. I really wasn't expecting to be this nervous at all. I don't feel that way in my house, or normally when I go out. I suppose I never thought very much about how often I simply don't eat when I'm out of my house these days. It really caught me off guard, to feel this way. Very unsettling.

>>You got sick from eating something that had gluten in it, not from touching doorknobs and the hotel room.

Sadly, that's pretty much true and not. I'm sure I got gluten, but the only way for me to get the gluten was from something I touched in the hotel room that then touched my food and got ingested (or my mouth). Or somewhere my fork touched that then touched my food, like a table top or nightstand. I thought I washed every time, but I must have missed a moment. We only had gluten-free food in the hotel room, because we're all gluten-free. The only foods I ate were ones I made before we left home, in our gluten-free kitchen, from the same foods I've been eating for months now. Not even a new package of something: I buy my ingredients in bulk, so it's all the same batch I've had all along. Only ate in the room, washed our hands thoroughly every time we came in from somewhere - that washing I at least know positively happened. So...I got gluten, definitely, but I had to get it off of something touched in the hotel room. Or I suppose maybe if something got on my clothes, but that seems even more difficult to get glutened that way, ya know?

>>I get sick from trace amounts of gluten. I eat out LOTS, maybe 4 or 5 times per week some busy weeks and I've only been glutened a few times from it. It sucks being glutened but I'll take the risk in order to have a life. I've only been glutened badly once. The other ones were minor trace CC and symptoms went away after a few hours or so.

That's really lovely that you can eat out so often! I must admit, I'm probably a little jealous. I can't at all. I tried a few times, but the consequences when I get glutened are so bad, the risk just doesn't feel worth it. It feels like the opposite for me. If I get glutened at all, I don't really HAVE a life. Even trace amounts, like eating a gluten free product that has 20 ppm, can have enough gluten to get me, badly, and I have vertigo, vomiting and nausea, headaches, ugh. The worst of it only lasts a few hours, 6 at the most, but the vertigo and dizziness don't go away for a week or two. Can't drive or go on a boat without pretty nasty motion sickness, at that point. It's extremely motivating to stay gluten free, though!

>>Enjoy yourself! Life is meant to be lived. Don't let celiac put you in a bubble. It's not life threatening like a fatal peanut allergy where you would have to use an epipen.

Okay, I laugh a little. I have an epipen, too! But still, it's always a good reminder to make sure not to feel trapped by the disease. The fear is definitely there. I'm trying to find the best way to be safe, but I'm so incapacitated when I get glutened that it's hard not to feel hyper about it sometimes. For example, I took some kids out hiking, up in the mountains, a few weeks ago. Ate a gluten-free bar that had too much gluten for me to tolerate and got hit with all the vertigo and such. But the cell phone had no reception, there were no other adults, and the kids had hiked ahead. I had to stumble after them, falling into trees, until they heard me calling, and then we had to wait about 2 hours before I could control myself enough to drive a car safely (unpleasant to drive, but doable).

Being on a trip in a strange city without any support and potentially debilitating consequences if I screw up...I'm still struggling with that. I think it will slowly improve, because honestly, I haven't gone out much for a while anyway so this is still a bit new. But...dang.

But your mention of epipens...now I'm wondering if people who have to be hyper vigilant about that might have some helpful hints at mellowing out while still being careful. Have to go check out a couple allergy sites, maybe!

Thanks for the comment and the encouragement.

shauna

[T.H.]

Oh, I'm about a year in, too! congrats on making it this far.

Yeah, I'm definitely more sensitive than I was. Very frustrating. The paranoia is really frustrating, but not as much as the glutening. I just wish I could be vigilant AND relaxed at the same time. Not sure that's possible, but that's my goal, I think!

Are there any celiac groups in your town? The few restaurants that we found that my celiac daughter can eat at we found through the local group - they recommended restaurants that were safer, and managers who took more care and such. Maybe that would help you?

This is becoming my life. I'm starting to be paranoid. It's been a year and I can't believe how good I feel when I'm off gluten that I'm afraid of gluten. I'm afraid of getting sick. Looking for a bathroom, always having to know where the closest one is. I hate that. And I seem to be becoming MORE sensitive than I was last year! And I was already very sensitive.

I got sick after Applebee's the other day, and that's left my feeling awful. Now my dad says I can't eat out anymore. And I can't do that.

[T.H.]

Oh, congrats on the trip!

>>I'm now at a friend's place and she and her husband are being great but I do feel like a pain in the neck having to point possible problems all the time. But I have my own food and she's not the cooking type so I don't have to worry about not being able to eat her food.

It is so very hard when someone is trying to be kind and thoughtful and you have to speak up about more things, isn't it? I feel so bad when that happens!

How long do your symptoms last?

>>Sometimes I wish for the ease of being in my own gluten free home, but I refuse to miss out on travelling and seeing friends far from home.

I'm slowing heading that way, I hope. I had about a year where I couldn't breathe when I came into contact with tons of foods, and things in the air, and we didn't know the heck would set me off, so I was stuck in one town for nearly a year, some weeks barely able to leave the house without reacting and having breathing trouble. Docs couldn't figure out what it was until a little over a month ago, but at least they figured it out! But it's made me very much want to go out and travel now! Another reason why the nervousness was such a surprise.

I'm very much hoping that I can relax the more often I do it, ya know? Hoping the rest of your trip goes very well and you can stay safe and healthy for it!

[T.H.]

Touching stuff doesn't bother me since you can't get sick from that. Going out to dinner is just a pain, but just order everything plain and you should be OK. I was at a brunch all yesterday afternoon around all non celiacs and it was fine. The hostess made my plate totally separate and it worked out wonderfully.

That is wonderful for you! My dad and brother are like that. They go out to eat and just eat carefully or get plain food, and they usually do quite well.

Wish I could say that same, but sadly...I very much do get sick from touching stuff that might have a few specks of gluten, if I screw up and touch my food, my plate, my fork, my mouth right afterward. We've actually stopped allowing gluten into the house, period, because when we've had friends bring gluten in, even when they are very careful, it still gets on their hands and their hands touch enough places that myself or my daughter get sick unless I scour everything down after they leave. Too much of a pain in the butt. I swear, it feels like having a peanut allergy with how little I can react to.

The dinner thing, I've tried, but so far, no luck. The last time I ordered, for example, the manager came to talk with me, found out everything I couldn't eat, got ribs that were just a frozen hunk of meat with not even seasonings on them, cooked it himself on a grill he scoured clean (no seasonings at all, as I react to corn which was in their salt), but there must have been enough gluten left on the grill, or someone touched something with gluten, because with nothing on the plate but the ribs, I was sick as a dog within minutes. My husband, who loves to eat out, has been pretty adamant about my not going out any more because it's been such a disaster every time.

He was the one who in the beginning was urging me to try it because surely we could find some good gluten-free places in town. But hopefully I'll get it all figured out eventually and find a place that I can eat safely. Which would be awesome, I'll admit!

[T.H.]

#1 - very good point. I think kind of like that Buddhist philosophy: life is pain. If we spend all our time trying to avoid the pain, we avoid a lot of life. So accepting that getting glutened is gonna happen...thank you. I think that might actually help my brain think about it.

in a bubble.

#2 - I'm definitely working on that one. I think the biggest pain in the butt is just making all the food. A lot of working cooking a week's worth of food for 4 people to take on a trip, LOL. But most of the time, we can find a store that sells food we can buy, so it can happen.

#3 - don't let fear steal your joy. I like that way of putting it.

thanks for the thoughtful ideas.

[Marz]

Woah, sounds like you're extremely sensitive I wonder how gluten got into the hotel room - think people throw flour parties in there?? I guess I'm not surprised, previous inhabitants could have gone through a packet of biscuits and left crumbs and sticky fingers everywhere :/

Thanks for explaining your symptoms - does medication help at all? I'm thinking maybe you could get a good anti-nausea/motion sickness medication for trips away from home where trace gluten cc might occur.

Of course you've probably thought of that already, but worth a try

I've had nasty motion sickness on a cruise before (And it continued for a week *after* the cruise, on dry land, I have no idea why...), and I was very much not a happy person So sorry to hear you have such bad side effects...

I'm also pretty sensitive - I react violently to trace amounts of gluten, and I react to "gluten-free" flours that are not so much gluten free I'm afraid. I got badly smacked a week ago while away on holiday, spent a few hours in the loo in the middle of the night. I was nervous about the trip, but I planned for a cottage with a kitchenette so I could cook my own food. CC from utensils was a concern - I just washed everything and didn't use non-stick pans. Unfortunately my gluten side effects are delayed, so I had obviously been glutened just before the trip - oh well, live and learn...

[anabananakins]

Oh, congrats on the trip!

Well, I used to think I was ok after a few hours in the bathroom and a good nights sleep, but I'm feeling the results of cumulative glutenings and my balance has been all wonky for a week now. I'm finding it hard to tell since I don't think I've been glutened ever day, but pretty consistently. Oh well, it's a learning experience anyway.

Oh yikes, you poor thing. No wonder you're anxious. I'm so glad they figured it out at last! But yeah, it'll take a little while to let go of that nervousness.

Thank you, and for you too!

[Marz]

Hi TH,

I really don't know if this is relevant to you, feel free to ignore if I've completely misread your post. This is for the reactions you feel away from home, at restaurants etc. I have no doubt that you are very sensitive to gluten, but maybe this explains some of the restaurant/on holiday/hiking reactions you've had?

Was just mulling last night over something you posted earlier in this thread - you said something like you reacted within a few minutes to a not-so-gluten-free meal that the cook made for you at a restaurant. Do you usually react that quickly to a glutening? Just wondering, because gluten (As far as I know) is only absorbed in the small intestine, and it would take more than a few minutes for the food to be digested, move into the SI and be absorbed, get into the blood stream, and head to your balance centres to wreak havoc.

I'm just speaking from personal experience, as I suffer from panic attacks (which are in turn usually gluten-triggered). The fear in my case is over food poisoning, or GI symptoms from getting glutened. So it's something like : I feel slightly sick, I start worrying if I've been glutened (or ate something dodgy) -> brain takes over and makes me feel worse -> start feeling real nausea, getting d and shaking -> feel more fearful about getting sick -> vicious cycle. At this point I can tell myself I'm having a panic attack, and the nausea/GI symptoms starts abating as my brain calms down.

** So it's very much a case of my panic attacks actually mimicking the very symptoms I'm afraid of!

So just wondering in your case, since the symptoms come on so quickly, if your brain isn't causing what you're fearing - the nausea, disorientation, maybe shakiness - specifically when you're away from home and feeling nervous already about what you're eating?

Feel free to ignore this, but it might be worth investigating if you feel you're reacting to food that perhaps your daughter didn't react to, or if the symptoms come on so quickly?

And feel free to shout at me if I completely misread what you posted

[T.H.]

Heya,

Thanks very much for such a detailed post. Really appreciate the thought you put into this.

The quick reaction to gluten has been, sadly, consistent whether it's happened at home or out and about. It's never taken longer than 15 minutes to react, but it's usually 5 minutes or so. It's one of the reasons at first that my doctors and I were thinking I was having allergic reactions rather than gluten ones.

After lots of research, and some very useful links from other celiacs here who have neurological problems with the gluten as well, the best I can tell is that neurological issues tend to be a bit weird. Researchers have done tests on gluten being introduced to mucus membranes, but not ingested, and within minutes a celiac will have an auto-immune response to it. Non-celiacs don't. That doesn't translate into gut damage, however, simply a heightened auto-immune reaction. My understanding is that this is interesting, but researchers don't know what to make of it yet. (I can look up the links to the couple of abstracts that mentioned this, if you're interested. Just have to hunt through my bookmarks. )

From what a few of the other celiacs with neurological problems have said, some seem to have had a neurological reaction with gluten coming into contact with the mucus membranes very quickly, even without ingestion. This really seemed to track with what I've noticed in my own body. I don't get the big D, bloating, none of that (except with a few foods allergies, we think). Never have, even before going gluten free. Makes me wonder if all my vomiting and nausea with getting glutened are related to the vertigo rather than any gut trouble.

I had wondered for a while if it MIGHT be panic attacks, but looking over how it developed, I eventually decided not. It just didn't quite fit. At first, I was actually really happy about the diagnosis. I was really strict with myself over the diet, but I hadn't had any symptoms (that I associated with gluten) before going gluten free. Our whole house went gluten free, we had new cookware and such, and I was really feeling comfortable and like I knew what I was doing and so could be safe, ya know? Hadn't even thought of having a 'bad' reaction at first.

Later, I started having trouble with all sorts of foods, so I had to be really vigilant and felt a bit paranoid about that, but got that figured out and was still feeling good. So when the vertigo and all that hit, it was actually the nasty reactions out of nowhere hitting first, and after it happened a few times, that's when the paranoia started rearing its ugly head. Right now, after I get the vertigo, it just lingers on for forever, too, long after I would expect a panic reaction, you know? Although I'll admit that I'm not familiar with how long those last - do your panic attacks tend to last for days, or hours, or minutes? For me, it's now, hmmm, 4 days? 5? since I got glutened and I still have trouble moving or turning my head too quickly, and nausea associated with that comes whenever the dizziness hits. Grr. Frustrating.

That's really interesting that the panic attacks mimic the same symptoms. I tend to have an emotional reaction from gluten the following day too, but I'm usually irrationally angry. Like the PMS queen, LOL. It's very motivating for everyone ELSE to make sure I stay gluten free too.

>>>Feel free to ignore this, but it might be worth investigating if you feel you're reacting to food that perhaps your daughter didn't react to, or if the symptoms come on so quickly?

The one thing I think I want to really remember re: your post is that I want to make sure that this DOESN'T happen, you know? Because with how nervous I'm starting to feel, it would not surprise me if I started freaking myself out into thinking I have symptoms. I could completely see myself doing that, honestly.

The thing with my daughter has been interesting. There have been times we've eaten the same food and we've both reacted. I can remember one time where I was sitting down and my daughter started calling for me (her stomach had started hurting, although I didn't know it at the time) and I fell down as soon as I tried to stand because the vertigo was hitting me, too, only I hadn't moved so I hadn't noticed it yet.

The reaction I get when my daughter doesn't react is like a slightly less nasty version of the one I get when we both get glutened with the same food. It was actually this that started me realizing that this was actually gluten doing this. I couldn't eat the foods she was eating for allergy reasons, at first, so I never had that chance to see us both react. Once my diet improved, then that changed and I realized that this dizziness thing always coincided with her having gluten issues, if we were eating together.

It's been freaky, but in some ways, it's really helped me out. Before this, I had amaranth and an oil that were supposed to be gluten-free, but I started wondering if maybe they had enough gluten to bother me, if I was more sensitive than my daughter. I dropped them both and actually saw an improvement, so that's been a very positive aspect of all of this.

>>And feel free to shout at me if I completely misread what you posted

Oh goodness no! I think you read it just about right. Heh...my body is just weird, is all, LOL. Again, thank you for such a thoughtful post. Really appreciate it!

shauna

[T.H.]

>>> think people throw flour parties in there?? I guess I'm not surprised, previous inhabitants could have gone through a packet of biscuits and left crumbs and sticky fingers everywhere :/

Snicker - I'm imagining people dusting everywhere with flour now, LOL. Aw, man, I think that might help me lighten up a little. Just imagine the flour parties across the world and just remember that careful doesn't mean frightened.

>> does medication help at all?

You know, I hadn't even considered that, but I have a feeling I'd have trouble with it. Corn seems to be a big issue for me, and so many medications have corn in them that I have great difficulty finding any I can take. Trying to find ones that are corn AND gluten free? Ugh. Feels impossible sometimes.

>>I've had nasty motion sickness on a cruise before (And it continued for a week *after* the cruise, on dry land, I have no idea why...).

Oh goodness, I've had that before, too, yes! Awful way to feel. That's pretty much how the vertigo goes for me. I get motion sick really easily while it's going on, even when it's almost gone, the motion sickness still persists for a while. When the car stops OR starts - whenever there's a change in motion, my body can't adjust to it at all. Very similar!

>>I'm also pretty sensitive - I react violently to trace amounts of gluten, and I react to "gluten-free" flours that are not so much gluten free I'm afraid. I got badly smacked a week ago while away on holiday, spent a few hours in the loo in the middle of the night. I was nervous about the trip, but I planned for a cottage with a kitchenette so I could cook my own food.

Sorry to hear you got glutened, but that cottage idea is one I've been seriously thinking about. Nice to know that it seems to work for other people, too! Since you're sensitive, I'm curious: do you have any brand of flours that seem to work for you and haven't ever glutened you? Ancient Harvest Quinoa has done well for me, but I'm still searching for any others, and the motivation to try one that might zap me makes me rather lax on hunting them down, you know?

Thanks for the reply.

[ravenwoodglass]

Hi TH,

Do you usually react that quickly to a glutening? Just wondering, because gluten (As far as I know) is only absorbed in the small intestine, and it would take more than a few minutes for the food to be digested, move into the SI and be absorbed, get into the blood stream, and head to your balance centres to wreak havoc.

It is not unheard of for people to react that quickly especially if they have neuro effects. Gluten can enter the bloodstream through any mucous membrane and does not have to get all the way to the gut for the antibody reaction to start. In some places buccosal and rectal challenges are done. A suppository or gluten infused swab is used and then the tissue is biopsied 2 hour later to find the antibodies. A much more humane way of testing than a 2 month gluten challenge but not commonly used here in the States.

[Marz]

Thanks for the detailed reply

Yes I would love to see those abstract links regarding neurological damage if you can find them.

My symptoms are mainly GI, but I do get depressed a few days after a big accidental glutening (uncontrollable crying, go figure). Occasionally I get a weak-feeling muscle or just general exhaustion. I also get the PMS attacks where I feel I should lock myself away for everyone else's safety

Right now, after I get the vertigo, it just lingers on for forever, too, long after I would expect a panic reaction, you know? Although I'll admit that I'm not familiar with how long those last - do your panic attacks tend to last for days, or hours, or minutes?

The panic attacks in my case last for like half an hour to an hour at most. It really hits like a ton of bricks, and it's usually something that sets it off - some trigger. Though if I'm very stressed out at work I can start having one at work for no reason. It's like a wave of heat flowing over me - I sometimes feel disorientated during the waves. It's usually accompanied by shaking, nausea and butterfly stomach. As soon as I realise I'm not dying, it's another attack, I can distract myself and calm down. Then I usually feel weak afterwards from the adrenaline hit, but I usually recover within 10 minutes or so.

The GI symptoms from gluten do last days :/ So I guess it's very much a gluten reaction in your case.

Medication wise - it's going to be tricky getting gluten and corn free meds. Might be worth phoning up a few pharmacies and seeing if they can help you. I know for problems like inner ear infections they work really well, not sure if it's as effective for gluten-induced damage.

Have you looked into natural remedies? I know ginger for one thing is good for motion sickness nausea, if you can tolerate it. Chamomile tea is good for calming, just make sure the baggies are gluten-free.

[Marz]

Since you're sensitive, I'm curious: do you have any brand of flours that seem to work for you and haven't ever glutened you? Ancient Harvest Quinoa has done well for me, but I'm still searching for any others, and the motivation to try one that might zap me makes me rather lax on hunting them down, you know?

I'm using the Orgran brand flour at the moment, which is an Australian company, that seems to react the least with me. "Gluten-free" flours don't give me super gluten reactions fortunately, I just have some mild nausea after eating them, so I just try to go with the safest mix I can get and don't eat too much of it. "Naturally gluten-free" flours (not certified gluten-free etc) usually affect me badly though, like sorghum meal/flour - seems to generally be fairly badly contaminated.

I love quinoa, but it doesn't seem to like me very much :/ Then again I'm still trying to figure out all my food intolerances, so maybe it was something else I ate. Have your food allergies/intolerances receded over time, or are you just getting a better idea of what you can tolerate or not?

[Marz]

Before this, I had amaranth and an oil that were supposed to be gluten-free, but I started wondering if maybe they had enough gluten to bother me, if I was more sensitive than my daughter. I dropped them both and actually saw an improvement, so that's been a very positive aspect of all of this.

I've had a few aha moments like this. Like realising my work cappacino machine might contain traces of gluten or cc that's affecting me. I was feeling so much better during my dairy free days - otherwise I usually have 1 or 2 cups a day of this stuff. Cut out the coffee, and I'm feeling a tiny bit better. Baby steps, baby steps...