Still Frustrated Not Knowing If I Have Celiac Or Not

[jasonD2]

I still dont know what is safe to eat or not. I am as careful as can be when I eat out but I am no longer that OCD about it and am not sure if i should or shouldnt be. I never got an official celiac diagnosis cause they never found evidence and just think im gluten intolerant. I also dont get horribly sick like others do when they are exposed so that kinda give me more incentive to not bee so anal all the time.The whole psychological element of what i should or shouldnt be doing is really the problem here. I know gluten is bad for me so i avoid it, but how much do i avoid and if i get a small dose from cc will it cause anything bad to happen? aside from my ongoing stomach issues which are unrelated to gluten I basically feel fine...my energy is good, i sleep very well and have a fairly active lifestyle.

I am also in a relationship of almost 6 months and my girlfriend is still getting used to my dietary issues and i think it frustrates her sometimes but as a whole she is supportive. SInce i havent been diagnosed w/ celiac i tell her i have a gluten allergy and also avoid dairy, which is basically the truth. She once made a comment how she would never be able to date someone who had a life threatening allergy..like a peanut allergy or anything that would cause an anaphylactic reaction. that kinda worries me cause if i did have confirmed celiac then I feel like she wouldve never stayed with me.

anyway, would appreciate some suggestions on how to go about my life with all this uncertainty about what i have and what i dont have

thanks

Jason

[carmel101]

hi, I can be difficult to stick to a gluten free diet especially when eating out. Lots of restaurants dont't understand whats involved in a gluten free diet. I am on a strict gluten free diet and at this stage I really dont mind at all, as I feel so much better when I'm on it. I usually know if I had gluten as I either get ill immediately almost immediately or I am really really exhausted the next day.

When you are on a gluten free diet and sticking to it you do fell well and I know friends who will break out every now and then and will not have any ill effects. You should remember that its basically a very healthy diet and if you stick to unprocessed whole foods you should be fine. I have found the website www.glutenbreadrecipe,com/wordpress has lots of great info and lots of recipes look at. Its worth having a look

Hope this helps

Carmel

[srall]

Jason, from my own experience, and from what I've read on this board, the most frustrating thing about both Celiac and gluten intolerance is not being able to figure out what is causing you problems. I still can't believe that doctors have such a hard time diagnosing GI (or dairy, soy or corn intolerance) based on dietary response. If some primitive blood test doesn't read positive then you MUST NOT have a problem with those foods. I really think you have to let go of a formal diagnosis and just do what YOU need to do so your body functions properly.

I'm stealing this from another poster who wrote this a couple of days ago in another thread: Gluten free diet is free, legal and does not require a doctor's prescription. Unless you are a minor, you get to control what goes in your body and that is that.

I know you've had some issues with unsupportive family members and to that I would just say...try and be more private if you can. Control your own food choices and don't leave it to other people to prepare your food.

This is a tough adjustment, but I feel so much better it's really hard to complain.

Well, except my daughter and I are going to the movies today and I'd love to take her to lunch and buy movie candy/popcorn but will have to sneak in "safe" food...but at least we'll both feel good tonight.

[Wolicki]

Really, therapy is still a really good option, as much as you don't want to do it. It helps you to control your reactions to the world. You really ought to consider it.

[Loey]

  On 12/21/2010 at 3:45 PM, jasonD2 said:

I still dont know what is safe to eat or not. I am as careful as can be when I eat out but I am no longer that OCD about it and am not sure if i should or shouldnt be. I never got an official celiac diagnosis cause they never found evidence and just think im gluten intolerant. I also dont get horribly sick like others do when they are exposed so that kinda give me more incentive to not bee so anal all the time.The whole psychological element of what i should or shouldnt be doing is really the problem here. I know gluten is bad for me so i avoid it, but how much do i avoid and if i get a small dose from cc will it cause anything bad to happen? aside from my ongoing stomach issues which are unrelated to gluten I basically feel fine...my energy is good, i sleep very well and have a fairly active lifestyle.

I am also in a relationship of almost 6 months and my girlfriend is still getting used to my dietary issues and i think it frustrates her sometimes but as a whole she is supportive. SInce i havent been diagnosed w/ celiac i tell her i have a gluten allergy and also avoid dairy, which is basically the truth. She once made a comment how she would never be able to date someone who had a life threatening allergy..like a peanut allergy or anything that would cause an anaphylactic reaction. that kinda worries me cause if i did have confirmed celiac then I feel like she wouldve never stayed with me.

anyway, would appreciate some suggestions on how to go about my life with all this uncertainty about what i have and what i dont have

thanks

Jason

I'd be concerned about being in a relationship with someone who isn't willing to accept the chance that their boyfriend/girlfriend is sick. It's not easy to do but a relationship requires both people to give and take. We're supposed to love each other regardless of our flaws. if you have a medical problem it's certainly not your fault. I'm sure you would be there for her through thick or through thin.

Also, is there a reason you haven't been tested? If you do have Celiac it can wreck long term havoc on your intestines and organs. Believe me, I've gone undiagnosed for decades and wish I had know sooner. The diet can be difficult but my overall health is more important to me. I recently found out that I have an ulcer and IBS as well as the Celiac and that limits my diet even more.

I'm pasting some links about Celiac below. You should watch them. It would be great if your girlfriend watched them too but that's your call. Hope they help.

Loey

[jasonD2]

oh trust me ive been thru every test and came up negative, however, i was not on a 100% gluten diet when i got tested. still my insides were clean after endoscope and pillcam and colonoscopy. im not prepared to eat gluten for 6 months to a year just to maybe get an accurate diagnosis, so i chose to live gluten free but again i dont know how strict i need to be so sometimes i probly let things slip

[Roda]

  On 12/21/2010 at 4:29 PM, Wolicki said:

Really, therapy is still a really good option, as much as you don't want to do it. It helps you to control your reactions to the world. You really ought to consider it.

I agree with wolicki that you should consider counseling and not brush it off. All of your posts have the same underlying problem. A good skilled counsler could help you work through those feelings.

[GlutenFreeManna]

I'm a little confused by your situation. If all your tests were negative and you don't react when you eat gluten then what led you to eat gluten free? Perhaps I'm misunderstanding your posts. If eating gluten does indeed make you sick then you have your answer. No need to get a test to "prove" what your body is telling you. If eating gluten free has not improved your health then why continue it? I hardly ever say this, as I think most people here need to eat gluten free, but there are other conditions besides celiac/gluten intolerance. You may be one of the few here that has something else going on that seems similar to celiac. I hope you can figure out what it is, you seem to be very stressed out. The pp's suggestion of a counselor is a good one.

[jasonD2]

i saw some improvement when going gluten free- i used to have chronic constipation and wouldnt go for days but now i pretty much go every day or every other day. also i do have the DQ8 gene and my stool antibody tests were positive - blood and biopsy all neg though

[GlutenFreeManna]

  On 12/22/2010 at 4:48 AM, jasonD2 said:

i saw some improvement when going gluten free- i used to have chronic constipation and wouldnt go for days but now i pretty much go every day or every other day. also i do have the DQ8 gene and my stool antibody tests were positive - blood and biopsy all neg though

Well then I think that's your answer. You did have some positive testing and some positive response to the diet.

[sandsurfgirl]

I'm confused because you have posted before about having reactions after eating gluten and not feeling well, being bloated. You posted one time about stools floating after eating at a Chinese restaurant. That image hasn't left my brain even after I hit the delete button. LOL

I agree with therapy. Your health is making you spin your wheels so much and you need to have someone help you cut through the confusion and get a clear head.

[jasonD2]

yes but i also has bacterial overgrowth which was causing the floating stools- that actually went away

[lynnelise]

Honestly if the stool test was positive and I had the celiac gene then I would just keep eating 100% gluten free. CC happens, don't freak out if it does but don't take risks either.

I understand your frustration. I too had negative bloodwork (wasn't on full gluten diet either). I had an EGD to look for an ulcer and they noted inflammation in my small intestine but did not biopsy it. So basically I don't know for sure that gluten is my issue and I'm not willing to go back to eating it to find out. Sometimes with CC I've just had bloating and fatigue...other times I've had less than 2 minutes to find a bathroom! So I don't know for sure that I am at risk for the types of diseases celiacs are prone to while on gluten but I avoid it just in case.

[Loey]

  On 12/22/2010 at 2:41 AM, Roda said:

I agree with wolicki that you should consider counseling and not brush it off. All of your posts have the same underlying problem. A good skilled counsler could help you work through those feelings.

I'm in counseling and feel fortunate that I have it as an outlet. This disease is hard to cope with. On top of the illness my husband was just transferred to a new company,we moved to a new state, and our only child eft for college. It always helps to talk to someone with an objective opinion. My Psychiatrist talks to me about Celiac and my other health issues and is well informed. There's no disgrace in seeking outside help.

Loey

[cap6]

I agree Loey. I am back with my therapist and can have all the pity parties I want. She's paid to listen! lol

[Loey]

  On 12/23/2010 at 4:59 AM, cap6 said:

I agree Loey. I am back with my therapist and can have all the pity parties I want. She's paid to listen! lol

It's nice for me not to dump everything on my husband. Have a wonderful gluten-free holiday!!!

Loey

[sahm-i-am]

If you feel better gluten free, then stick with it. Girlfriend will have to deal with it, that is her problem. Your problem is your health. Why in the world would she want to date someone who is sick all the time? If she sees you firm in your conviction to be gluten free then she will become that way, too. If she sees you wishy-washy, then she will be that way as well. And if she doesn't come around, well... that is harder. Better to find out her true feelings now, than later. I would concentrate on you and your attitude towards this crazy new lifestyle. Gain confidence and gluten-free Independence, so that you can go out in the world and be JasonD2, not a guy with gluten issues. Don't let gluten free be in control of your life.

And if therapy is not on your radar, well then come here - lots of good advice, bad advice but always someone willing to listen and help. I wouldn't make it through the hard days without this place. And you don't need an appointment or pay outrageous fees! But seriously, if you need counsel and want professional advice please seek it.