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My Age Old Dilemma

jasonD2

By jasonD2
in Coping with Celiac Disease

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jasonD2 Experienced
jasonD2
Posted

of not knowing if I have celiac is once again making me absolutely paranoid. I seem to forget about it for a few months but then my mind starts wandering and I begin to obsess about it. I dine out on average of maybe 2-3 times per week depending on work, travel & other factors. I ALWAYS do my very best to pick restaurants that have a gluten free menu or can at the very least cater to folks with gluten problems. I really do my best but i'm sure I'm still getting gluten in my system (its unavoidable). I dont seem to have the type of symptoms that a lot of you have - in fact aside from some occasional leg/arm tingling I really dont get any other type of reaction after eating out unless of course I eat dairy which produces a very obvious reaction that I am used to. The leg tingling is hit or miss...sometimes i dont get it, sometimes I get it if i know I ate something that was questionable & sometimes I will get it even after eating what is supposed to be a "gluten" free meal. And its still not officially confirmed that the reaction is caused by gluten, although that is what I suspect.

Anyway, I may get a little laid back at times just because I dont get these violent symptoms that will put me out of commission for 7-10 days like some of you. For example I know Rosa Mexicana is pretty much entirely gluten free so i will usually not make too big of a deal with the server. Also one of my favorite thai restaurants doesnt use any gluten ingredients in their curries so usually i will just go and order without making any remarks. Last weekend however i ordered a grilled salmon salad at a place i didnt really feel comfortable eating to begin with, mentioned the whole gluten thing and am convinced i got glutened after the meal anyway. Friday night I went to a mexican place and the waiter had no idea what gluten was so i asked for the manager and he took care of me, however, I may have gotten glutened from that meal also but couldnt say for sure.

This is the ongoing dillema for me. Ive pretty much accepted the whole gluten free lifestyle and am ok with it...honestly. I am still able to eat out and enjoy food very much, but the question is am I potentially jeopardizing my health? i feel 2 opposing forces inside of me - one saying stay in tonight and cook - the other is saying no go to Yeah Burger and get the gluten free bun and gluten free fries. Also having a girlfriend is definitely complicating matters..ive done ok for 7 months and she is usually pretty accepting but if we are on the go or not close to a restaurant that i feel safe eating then it can get awkward. i cant tell her to get something and i will wait till later cause she wont do it. And if we do go somewhere and I take a laid back attitude about the whole thing just so i dont come off as a wuss i feel like im jeopardizing my health...but am I really since my symptoms are so mild and i dont even know if i have celiac or not. As you can see its a huge psychological mess. SO my question is...based on everything you read & know about me is there anything I am doing wrong or does it seem like im doing the best I can? i'm obviously not eating gluten anymore and have accepted there is a certain amount of risk with eating out, but I think as a whole I do ok but on occasion things probably do slip

Thank you

Jason

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ravenwoodglass Mentor
ravenwoodglass
Posted

If you are really doubting your diagnosis then you could always go back to a regular gluten diet for 2 weeks to a month and see what happens. Keeping in mind of course that symptoms are not all GI related they can be neurological so you would look for an increase in things like depression or anxiety etc as well as headaches and joint muscle pain or fatigue.

That would also let you know if you frequent experiences with anxiety have a root in gluten and perhaps make it clear if the tingling and numbness, a possible neuro effect, are coming from CC.

jasonD2 Experienced
jasonD2
Posted
  • Author

ive thought of that but i cant go back on gluten - ive made a lot of progress and dont want to compromise my health and possibly reverse all the repair I did

as for anxiety I had that all my life and has nuthin to do with gluten...i have it with and without wheat :)

jerseyangel Proficient
jerseyangel
Posted

Hi Jason,

Ravenwood has a good point--I would add that you could even go the whole route and do a gluten challenge for 3-4 months since you don't get the horrible reactions, and then get tested.

If this is of any help, I'm Celiac but I will go out to eat on occasion and am not afraid of potential damage. I choose carefully, of course, but then I enjoy it and don't worry. A bigger fear of mine would be a reaction which would be unpleasant.

I've had follow up testing (blood and biopsy)--once while in the middle of a reaction-- but there was absolutely no damage. I think at some point, if you do all you can to be gluten-free you have to relax, because at that point the anxiety could be more harmful than the perceived gluten damage.

jasonD2 Experienced
jasonD2
Posted
  • Author

Thank you Patti! I guess in my mind getting small levels of CC a few times a month arent that big of a deal but please correct me if im wrong. I eat very healthy & take plenty of vitamins and protective supplements for my gut & whole body and for the most part feel good on a day to day basis.

The biggest anxiety I have is that despite the fact im on a strict gluten-free diet, I fear constantly that im gonna get cancer, lupus, MS or all of the above. But on the flip side i would rather take my chances eating out because if that is taken out of the equation then my quality of life will be nonexistent. eating out in a restaurant and having a glass of wine is in some strange way a victory for me. i know that sounds silly but if i cant have even that then theres no point in anything anymore.

As for the challenge im not gonna do it and my celiac dr said its barbaric and unnecessary

mushroom Proficient
mushroom
Posted

ive thought of that but i cant go back on gluten - ive made a lot of progress and dont want to compromise my health and possibly reverse all the repair I did

as for anxiety I had that all my life and has nuthin to do with gluten...i have it with and without wheat :)

If you have accepted the fact that you have to be gluten free, I don't really see at this point how it can make a lot of difference whether it is celiac or gluten intolerance that you have. I guess I don't really understand where you are coming from on this. And the anxiety has nothing to do with it either way. So why the obsession on the celiac diagnosis? Is it realistic?

I do get the part about wondering if cc could be jeopardizing your health, but if you are unwilling to challenge gluten then I think you have to accept that your neuro symptoms are probably symptoms of cc and take them as a warning to be more careful. Only you can control where you eat and what you eat and it is not being a wuss to take care of your body since it's the only one you're ever going to have.

katryn Newbie
katryn
Posted

I was diagnosed with Celiac when I was 14 with positive bloodwork. After the endoscopy came back with no damage (negative) I decided that I didn't want to change my lifestyle or eating habits. I have mild symptoms, fatigue directly after eating gluten that clears up in a few hours, some snxiety and depression that I didn't know to possibly attribute to gluten and then recently, recurring headaches, which prompted me to examine my diet.

I am now 25 and I decided that it is time to stop ignoring my disease, but since my symptoms are so mild I am unsure about how intensely I need to worry about cross-contamination.

I have no problems not eating gluten, but when it comes to things on a molecular level of contamination, I don't think I would even be able to tell if I was "glutened". I have a similar concern, Jason, that if I can't tell when I am eating gluten, am I still damaging my body and making myself vulnerable to more serious conditions in the future? Where does one draw the line with stress and paranoia. I hear your concerns.

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jasonD2 Experienced
jasonD2
Posted
  • Author

Thanks for your feedback- sounds like we have the same dilemma. My theory is that occasional exposure shouldnt contribute to more serious conditions as long as it is sporadic and controlled. i can understand how eating bread and pasta daily wouldnt be in our best interest, but the small molecules which will inevitably enter our body anyway shouldnt really be a problem. The body can really tolerate so much so while im extremely careful Im not gonna drive myself nuts.

jerseyangel Proficient
jerseyangel
Posted

Thank you Patti! I guess in my mind getting small levels of CC a few times a month arent that big of a deal but please correct me if im wrong. I eat very healthy & take plenty of vitamins and protective supplements for my gut & whole body and for the most part feel good on a day to day basis.

The biggest anxiety I have is that despite the fact im on a strict gluten-free diet, I fear constantly that im gonna get cancer, lupus, MS or all of the above. But on the flip side i would rather take my chances eating out because if that is taken out of the equation then my quality of life will be nonexistent. eating out in a restaurant and having a glass of wine is in some strange way a victory for me. i know that sounds silly but if i cant have even that then theres no point in anything anymore.

As for the challenge im not gonna do it and my celiac dr said its barbaric and unnecessary

Yes, generally I would agree with what your doctor said about the challenge but I suggested it to you because this seems to be eating at you for a long time. In all the years I've been on here, I don't think I've suggested that more than a couple times--if that.

As far as the related diseases you fear, you know that when we stay on the diet our chances of those go down to that of the general public. There is no way to completely avoid some things--unfortunately we just don't have complete control over everything that might happen--no one does, even the seemingly "healthy". We can only do the best we can because as you say, otherwise what's the point.

The traces that you may get here and there by accident are inevitable--it happens to us all--and you are correct that they are not a big deal. It sounds as though you take very good care of yourself, so cut yourself a break--you're doing great!

If you really can't relax about this, it might be time to deal with the underlying anxiety. It's going to be ok, though ;)

jasonD2 Experienced
jasonD2
Posted
  • Author

Thank you again Patti! Ive been a bundle of nerves all day but reading your post put my mind at ease :) Everyone I know thinks I'm insanely health to the point where Im OCD about it, but im the type of fella that likes to be in control of things and when it comes to my health i will not stray. Every other person I know got the flu this winter and even after being exposed to it several times I never got sick..so thats gotta say something right? :)

jerseyangel Proficient
jerseyangel
Posted

Thank you again Patti! Ive been a bundle of nerves all day but reading your post put my mind at ease :) Everyone I know thinks I'm insanely health to the point where Im OCD about it, but im the type of fella that likes to be in control of things and when it comes to my health i will not stray. Every other person I know got the flu this winter and even after being exposed to it several times I never got sick..so thats gotta say something right? :)

Sure does, and it's good to be conscientious about your health. Just try to keep it all in perspective and strike a balance so that you don't focus on it too much. I understand that the anxiety can get the best of you sometimes--every once in a while I still have to remind myself to take a deep breath and chill :D

lynnelise Apprentice
lynnelise
Posted

I think going out to eat is fine as long as you stay careful. While I too am uncertain whether I am intolerant or celiac I guess I am lucky that I do have immediate stomach symptoms and a rash that clue me in to when I've been glutened. I eat out more frequently than a lot of people I just order very carefully and try to stick to gluten free menus. If I get sick more than once at a restaurant then I won't go back. Once could be a fluke, a repeat means they aren't taking it seriously. I also usually call ahead and if they aren't helpful or accomodating then I cross it off my list of places to try. I have some reason to believe that I do develop some intestinal damage from gluten so if I have been glutened I will ban eating out and stick to safe, easily digested food until I feel 100%.

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