In A Serious Dilemma

[jasonD2]

i've never been diagnosed celiac. All i know is I had a slightly permeable gut which prompted me to go for more testing. i had a stool anti-gliadin test from enterolab) which came back slightly elevated and a comprehensive digestive workup which showed colonic inflammation, bacterial overgrowth and sensitivity to eggs, soy, and dairy. it was actually negative for gluten, but probly because i started a gluten-free diet 2 weeks prior. I do also carry one of the celiac genes.

So i changed my diet, cut out all the bad stuff and started taking dig enzyme supplements and probiotics -- also did a candida cleanse. anyway, this gluten thing really has me concerned. i can go months w/o thinking bout it but I always come back to it.

Main problem now is my lifestyle. i work in sales and travel a lot. Since i haven't been diagnosed w/ celiac i must confess that while I try to adhere to the gluten-free diet, I still let things slide sometimes. I try to pick restaurants w/ gluten-free dishes and usually just order the same ones all the time. I also go to places like whole foods and even prepare & freeze my own food. but when im with clients or colleagues i dont have much say as to where we eat. when im in this situation i do the best i can but i dont drive the wait staff or myself crazy. if i sit there and say..wheat free, dairy free, soy free, egg free...no onions, no cilantro...im gonna look like a freak. so i do the best i can and thats all i'm prepared to do. i refuse to bring my own food into a restaurant and i refuse to cut myself off from the world and turn into a recluse. anyway, based on what ive told ya'll about my situation, can I get away with a bit of gluten here and there? I mean will this really really kill me? I refuse to do a 1 month challenge and a biopsy..i just wanna do THE BEST I CAN and thats it!

thanks

[Rachel--24]

  Quote

based on what ive told ya'll about my situation, can I get away with a bit of gluten here and there? I mean will this really really kill me? I refuse to do a 1 month challenge and a biopsy..i just wanna do THE BEST I CAN and thats it!

If you have Celiac Disease you are not doing yourself any good by continuing to have a little bit of gluten here and there. You are not allowing yourself a chance to heal and you are setting yourself up for additional health problems later on.

I think you already know this though.

It sounds like not having a diagnosis is making it more difficult for you to stick to the diet 100%.

I realize that you are trying to do the best that you can.....but.....I'm wondering if you would do any better if you actually had the diagnosis?

If you had the Celiac diagnosis I'm assuming that you would also still have the same job, same challenges with traveling and eating out, etc.? What would you do different? Would you be more motivated to bring your own food, or feel more comfortable explaining your dietary needs to the wait staff?

I think if you would do things differently having a formal diagnosis....then that would be the BEST you can do....and I would strive for that if I were in your shoes.

I would strive for 100% gluten-free.....and for better health.

If bringing your own food to a restaraunt means that you dont have to constantly worry about what damage you might be doing to your body....how can that be a bad thing? I wouldnt worry about what anyone else thinks.....you only have one body....take good care of it.

You may be causing damage when you are having a little bit of gluten....but not only that....the constant stress that you're experience by worrying about whether or not its causing damage cant be good for your health either.

In my opinion if you make a decision to stick to the diet (as if you had a formal diagnosis)....you wont have all of this added anxiety you're experiencing whenever you're exposing yourself to gluten. You wont have to worry about whether or not you're killing yourself.....because you wont be eating it.

To me it sounds like you have enough of an indication that gluten is a problem when you say that you refuse to do a challenge in order to be tested. Why continue to take risks?

Alot of people have a diagnosis and they also do the BEST they can do....and for them that means avoiding gluten 100%. I think if you make a commitment to do this....it can definately be done.

Good luck!

[BelievinMiracles]

Hey I know what you mean...I am/was in the same situation. I'd say it's hard to stay completely gluten free when you don't have an actual diagnosis of celiac because then you tell yourself I can have this one cookie just this time. But if you do happen to have celiac you are damaging your body with that one cookie.

Now it's all up to you. If you feel better on a gluten free diet than why not just stick to it. I know it's a lot easier said then done because I've had my binges and pay later. I admit I haven't been the strictest person on a gluten free diet but after this last slip up, I don't think I'll do it anymore. I've been hurting for about a week and a half now and it brings me back to a place that I never wanted to be again. So hopefully this will keep me strict. And the reason why I let it slip a lot of times is because I was never TRULY diagnosed. If I was, then I'd definitely be strict to my diet for sure.

It's hard to travel and stay gluten free! I give you props! Yay! Good luck!

[jasonD2]

When you slip what kind of problems do u experience?

For me, I don't experience any real symptoms when i eat gluten which is why its so easy for me to not make a big deal out of it when im eating out. If anything I get a little gassy and constipated, but so many other ingredients cause that problem for me as well so its hard to differentiate. I feel like crap when i eat the right way and the wrong way and dont even care anymore

[Rachel--24]

  jasonD2 said:

For me, I don't experience any real symptoms when i eat gluten which is why its so easy for me to not make a big deal out of it when im eating out.

If you're not getting symptoms....and you are having a hard time sticking to the diet without a formal diagnosis.....why not do the challenge for the tests?

It might be better for you to do the challenge so that if you DO have Celiac you wont continue to damage yourself over the long term. If you dont feel any worse eating it.....and you are going to continue eating it anyway....why not just go ahead with the challenge? If you were to test positive for Celiac it may be easier for you to stick to the diet.....even if you arent experiencing major symptoms.

[MyMississippi]

Hi,

Why not relieve yourself of all this needless worry by just going back to eating gluten, then get tested for Celiac disease, with the right blood work-- if that is positive, the doc will do an endoscopy (no big deal) and you will have your answer hopefully.

If you ARE celiac---- then you can worry about it and decide what to do.

If you are NOT celiac, you are causing yourself needless hassles trying to be gluten free. Finding out for sure that you don't have Celiac will make your life easier.

Celiac disease is much harder for men to cope with than women, I believe------ because most men don't like cooking from scratch all the time and having to worry about where they are going to find something to eat, and I don't blame them.....

[aikiducky]

I agree with the previous posters - you don't really have very convincing proof for yourself that you have celiac, and since it doesn't make a lot of difference in how you feel, it would be better to go back on gluten and get thoroughly tested. Make sure you have eaten a good amount of gluten for at least a few month before you go for the tests, so you don't need to worry about false negatives.

Pauliina

[ShayFL]

I agree with everyone here and have nothing more to add, but support for getting the proper testing by challenging gluten (for 3 months would be good). Eat plenty of it and then get tested.

[jasonD2]

The thing is I dont wanna potentially damage my stomach for 3 months and reverse all my hard work for the past year. regarding symptoms, I was severely constipated when i was on a regular gluten diet and once i went off i felt a better so thats incentive enough for me to remain gluten-free. i really dont wanna eat gluten for 3 months and be constipated again

another thing to consider is if i have an official celiac diagnosis it will be a preexisting condition and may cause problems w/ my health insurance in the future

[kbtoyssni]

  jasonD2 said:

The thing is I dont wanna potentially damage my stomach for 3 months and reverse all my hard work for the past year. regarding symptoms, I was severely constipated when i was on a regular gluten diet and once i went off i felt a better so thats incentive enough for me to remain gluten-free. i really dont wanna eat gluten for 3 months and be constipated again

If you keep eating gluten every now and then it's not much different than full-out eating gluten for three months. And if you're afraid of getting constipated again which went away when you went gluten-lite, sounds like you do have a diagnosis. Your two options are: eat tons of gluten again for a few months in the hopes of getting a positive result or go off all gluten completely. Or I guess you can eat gluten-lite, but then you might as well just eat gluten all the time.

[ShayFL]

That is right. With autoimmune diseases the trigger can be in a small amount or a large amount. The result is the same....damage. So whenever you eat "even a little bit of it" you are damaging yourself if you are Celiac. You arent doing yourself any health favors by be "gluten-lite".

[jasonD2]

Another problem....even if i order gluten free food at restaurants theres no guarantee that the food is 100% gluten-free. the ingredients can be gluten-free and it can be prepared gluten free but as long as the kitchen contains gluten there's bound to be traces of it in the food no matter how hard a chef trys to keep the dish gluten-free. its really a no win situation and as I said i'm not going to stop eating out and become a recluse..ill never have a social life and no woman is going to want to be with me if i refuse to go to restaurants.

[ArtGirl]

Jason, you've gotten good advice here. I'm not sure what you wanted to hear, but suspect that at this point the restrictions of being 100% gluten-free are not acceptable to you. Especially since you don't have an official diagnosis.

I think it IS more difficult for folks who must travel for a living. You may be facing some hard decisions and I think that may be part of your struggle. At some point you will need to decide which way you're going to go and then just do it.

[jasonD2]

The way I see it there are two possibilities here:

1. The trauma on my digestive system yrs ago (being on antibiotics, being stressed and contracting giardia) breached the integrity of my intestines and caused leaky gut and multiple food allergies (including gluten), but NOT celiac

or

2. the trauma actually triggered celiac diease, which then led to leaky gut and multiple food intolerances.

I'm just not sure which one it is. I know that giardia can cause permanent lactose intolerance and i developed that 1 week after i recovered. I was also tested for celiacs at that time and it came back negative. My gut feeling (no pun intended) is that my system was in a state of stress and my defenses were down and for 5 years i kept eating and drinking everything, which just over burdened my system and sent my immune system into overdrive.

does this make sense?

[AliB]

Even just ONE course of anti-biotics can radically alter the gut flora. Because AB's are impartial they will kill most bacteria, including, sadly, the good ones. That then opens up the gut to infestation by the survivors and those not touched by the AB's. The radical imbalance then starts off a chain of events that end up leading to a vicious cycle of inflammation and damage. I have a friend whose doctor, many years ago, put her on to AB's for 14 months (14 months? The man was a moron!). For years she has staggered from one illness to another - the AB's completely trashed her immune system - and her life.

All bacteria gives off by-products of some kind. Some by-products can be beneficial in small doses but if those bacteria get out of control the by-products can then become toxic. If, like me, you wake up with a sewage pit in your mouth every morning then you can bet your bottom dollar that you have a glut of rogue bacteria proliferating throughout your gut.

I too was tested for Celiac. My test also came back 'negative'. Whilst I am gluten-sensitive and much better off without it, it was only part of my problem. Whilst initially I thought that I was Celiac I do not now believe that to be so. I am convinced that my problems are down to a very unbalanced gut flora, and also believe that to be true of many others, especially those whose health problems have not dissipated with the removal of gluten.

If your immune system was unable to counteract and prevent the giardia infestation then it is highly likely that you have other rogue bacteria and/or yeast infestation/s. There are millions of bacterial strains. Science has barely touched the surface. Even if you have tests done which come back negative it does not mean they didn't find anything, just that they don't know what it is! It is only fairly recently that Helicobacter was discovered. I do wonder how reliable the test is for that, too, and whether it misses more than it picks up!

Believe me, I know what it is like. It is a miserable existence when you are frightened to eat anything. Just now I really hate food.

[jasonD2]

Can't the bad bacteria be eliminated with probiotics?