14 replies to this topic

[nostalgic]

Hi everyone! I just got diagnosed with gluten insensitivity (I guess?) based on results from Cyrex Labs. I tried to read up a bit on that here, but got mixed results. Basically, I was a suspected Celiac for a long time but had countless negatives and even a negative biopsy. At my acupuncturist's suggestion, I had the blood test done by Cyrex and apparently I am highly reactive to it. Anyway, I have not yet gone gluten-free (kind of enjoying a few last foods before I say goodbye to them forever) but I am getting really nervous reading a lot of the posts about glutening. I have a huge phobia of vomiting (emetophobia) and right now gluten never makes me vomit and as far as I know is never even responsible for diarrhea. I'm pretty terrified of getting glutened though after I go gluten-free because it seems inevitable and pretty horrific imo. I was at a really good place with my phobia, and now I am concerned it will regress tremendously because I will be constantly living in a state of paranoia wondering if I got "glutened". Help?

[Celiac Mindwarp]

I can only answer for myself - I am non celiac gluten intolerant, and my glutening symptoms are pretty much as before, if a bit stronger. I don't think I have any new symptoms, so maybe that is how it will be for you. So I get tiredness, migraine, brain fog, gastro problems.

Everyone is different. Not everyone gets symptoms from glutening. Whatever it was that were the symptoms that made you suspect celiac, and now intolerance or sensitivity may well be what you get if you get glutened.

Maybe you can get some support with the phobia side? You seem to have done really well to get this far keeping it under control.

Good luck

[mushroom]

Being glutened since I went gluten free has never made me vomit. I agree with MW that your reaction if you accidentally get glutened is likely to be the same as before. People who refer to vomiting are normally the people who also vomited before No need to add fear of gluten to your phobia.

[nostalgic]

Thanks for the help I have tried to get a lot of help with my phobia in the past and honestly most methods were pretty useless. I later found out I had a tachycardia issue and since I got put on medicine for that it has helped tremendously and my panic attacks are non-existent now. I just don't want to regress. This is what I wanted to hear though I was just concerned that I would develop crazy insensitivity to gluten once I'm off it for a while. Right now I would say I'm pretty asymptomatic. I have IBS, but it tends to be more related to fried, acidic foods and chocolate. D: I have racked up a bunch of autoimmune diseases though, that's why I'm incredibly in favor of going gluten free, because it is my understanding that it decreases the risk of developing more. Also apparently my gut does not like it, even though it doesn't really let me know (as of right now).

It'll probably be a while before I go to restaurants again though.

[Pegleg84]

I also have a "fear" of vomiting, in that i hate it and avoid doing it at all costs. Thankfully, for someone who gets nauseous on a regular basis, I've got a pretty strong stomach.
So, if you've never vomited because of gluten, then unless your stomach really does a bad flip, you'll probably be fine in that department. Nauseous, maybe (ginger is your best friend in these moments) but nothing you can't ride out.
Also, after you've been gluten free for a while, you might find your anxiety receeding even more. Panic attacks was a huge part of my symptoms pre-gluten-free, and still pops up if I get glutened now.
You may become more sensitive over time, but if you're doing ok now, then likely it won't get that bad.

Enjoy your last gluteny treats, and good luck with the diet.

[Sarahsmile416]

I, too have an intense phobia of vomiting - and I'm so glad you brought it up, because every time I have been glutened or react to dairy, my phobia rears its ugly head. It's bad enough having panic attacks being near people I am afraid will throw up or have a virus, it's that much worse constantly being afraid when I am glutened that it will happen. Thank goodness it hasn't happened yet and I hope it never does! Of course, I am only a month into it, but so far vomiting has not been a part of my cavalcade of symptoms!

[Celiac Mindwarp]

Just to add, my anxiety and panic attacks have also gone since I was gluten-free. Anxiety is one of the ways I know I have been glutened.

So - you may find gluten-free helps with all that side of things too. It is worth being aware that if you do get anxious, it may be that you have been glutened. If so, hold on.to the fact that it will pass.

[nostalgic]

I also have a "fear" of vomiting, in that i hate it and avoid doing it at all costs. Thankfully, for someone who gets nauseous on a regular basis, I've got a pretty strong stomach.
So, if you've never vomited because of gluten, then unless your stomach really does a bad flip, you'll probably be fine in that department. Nauseous, maybe (ginger is your best friend in these moments) but nothing you can't ride out.
Also, after you've been gluten free for a while, you might find your anxiety receeding even more. Panic attacks was a huge part of my symptoms pre-gluten-free, and still pops up if I get glutened now.
You may become more sensitive over time, but if you're doing ok now, then likely it won't get that bad.

Enjoy your last gluteny treats, and good luck with the diet.

Nope, never vomited from gluten (except with a stomach bug, but that was any kind of food :/) and just talked to my acupuncturist/natural doctor today and he seems pretty confident that I shouldn't react too strongly to any cc since I don't have a very strong reaction now. I don't consistently have any gastrointestinal symptoms with gluten, just occasional IBS and icky nausea (that's more due to other AI diseases though). I'm the same though, I get so nauseous any sane human being, including me sometimes, would give up and just vomit but I just seem to stay nauseous :/ Yes, I love ginger and even have Zofran which I love dearly It's amazing how much panic attacks are related to underlying medical issues isn't it? When I got my heart issue solved it was like night and day. I'm glad this should help even more.

Yep, I plan to go gluten-free in about a week, I need to stock up and clean up a bit (I'm in college, my kitchen needs help). I am savoring every last gluteny treat

I, too have an intense phobia of vomiting - and I'm so glad you brought it up, because every time I have been glutened or react to dairy, my phobia rears its ugly head. It's bad enough having panic attacks being near people I am afraid will throw up or have a virus, it's that much worse constantly being afraid when I am glutened that it will happen. Thank goodness it hasn't happened yet and I hope it never does! Of course, I am only a month into it, but so far vomiting has not been a part of my cavalcade of symptoms!

It's always nice to find another emetophobe who truly gets it Sorry you have such problems. Hopefully it gets better as you are off gluten longer. Fingers crossed vomiting stays away from you, you'll probably be fine, emets tend to have strong stomachs. Good luck!

Also forgot to multi quote Celiac Mindwarp--- thanks for the info! I will definitely look out for that. My anxiety is pretty well-controlled now, but I'll always take improvement! I can relate to what you said a bit. Sometimes I will have a panic attack and later realize I somehow missed by beta blocker that morning.

[Madagascar]

anxiety seems to be strongly connected to celiac disease . . . wouldn't it be nice if yours went away as well? here's an interesting link, a powerpoint about the links to neurological effects of gluten in a sensitive person: http://www.mybrainhe..._Feb_8_2011.pdf

kinda nice to know there's a reason for how you feel. the link above includes links to the medical studies behind their information.

[Sarahsmile416]

anxiety seems to be strongly connected to celiac disease . . . wouldn't it be nice if yours went away as well? here's an interesting link, a powerpoint about the links to neurological effects of gluten in a sensitive person: http://www.mybrainhe..._Feb_8_2011.pdf

kinda nice to know there's a reason for how you feel. the link above includes links to the medical studies behind their information.

That is very interesting - thanks for putting it up there. Even though it specifically links anxiety and celiac, I would assume the same could be found, maybe to a lesser extent with NCGI?

I have had anxiety almost all my life, from my phobia of throwing up to your more garden variety social phobia, I will be interested to see how staying away from gluten affects it .

[JNBunnie1]

Generally speaking, it's not possible to rule out Celiac. The testing process is too
unreliable. So don't assume that just because your tests were negative, means you
don't have it. The other AI diseases you speak of argue strongly for the idea that
you probably do.

Also, one of my symptoms was violent, persistent, unremitting nausea- hard to
describe exactly horrible that was, it lasted for six months straight. I do not have an
actual fear of vomiting, but I will sure go to some lengths to avoid it..... I have been
gluten free for eight years, and on the rare occasion that I am glutened not only have
I never thrown up, but the nausea rarely returns, as well. So you have that to look
forward to!

[Celiac Mindwarp]

I have NCGI and my anxiety was bad before, much better now. Fingers crossed for you

[Sarahsmile416]

Generally speaking, it's not possible to rule out Celiac. The testing process is too
unreliable. So don't assume that just because your tests were negative, means you
don't have it. The other AI diseases you speak of argue strongly for the idea that
you probably do.

Also, one of my symptoms was violent, persistent, unremitting nausea- hard to
describe exactly horrible that was, it lasted for six months straight. I do not have an
actual fear of vomiting, but I will sure go to some lengths to avoid it..... I have been
gluten free for eight years, and on the rare occasion that I am glutened not only have
I never thrown up, but the nausea rarely returns, as well. So you have that to look
forward to!

I am confused - can you clarify why you can't rule out celiac with a negative biopsy? Mine were negative as well, so I assumed that was the last word on the situation. I, too, have other AI issues so for that reason, I do not count out Celiac later on (I was pre-diabetic for years and then at 27, I developed Type 1 diabetes). I understand why after a blood test you cannot rule it out, but I always thought biopsies were pretty definitive.

And CeliacMindwarp- thank you!! That gives me hope that perhaps mine will get better too - particularly the social anxiety!

[mushroom]

Your small intestine is more than 22 feet long; I am not sure of the size of your duodenum. Your GI doctor can see your duodenum, but celiac disease is normally not visible to the naked eye; he cannot see more than the very beginning of your 22 feet that follows the duodenum. Best practice is to take six biopsy samples (some doctors think only one is necessary). Celiac disease is known to be not evenly distributed -- it occurs in patches here and there. Chances of it (a) not being visible and (b ) being missed are very high.

[nostalgic]

Generally speaking, it's not possible to rule out Celiac. The testing process is too
unreliable. So don't assume that just because your tests were negative, means you
don't have it. The other AI diseases you speak of argue strongly for the idea that
you probably do.

Also, one of my symptoms was violent, persistent, unremitting nausea- hard to
describe exactly horrible that was, it lasted for six months straight. I do not have an
actual fear of vomiting, but I will sure go to some lengths to avoid it..... I have been
gluten free for eight years, and on the rare occasion that I am glutened not only have
I never thrown up, but the nausea rarely returns, as well. So you have that to look
forward to!

I'm so sorry you had unrelenting nausea, I can completely relate, and honestly I prefer pain (no matter how severe) over horrific nausea which I too have suffered from pretty consistently. Between that, IBS (or what they decided to call it) and GERD as well as hopefully alleviating symptoms of other AI's and preventing more from springing up, I am excited to see what going gluten-free will do for me in the long-term.