This Is A Whole New Concept To Me

[ThePatient]

Wow. That's all I can say, I've been on this long odd journey and just recently learned of celiac disease-for some reason I thought it was one of those made up diseases like TMJ (really arthritis, no?) etc. etc. Well, apparently, this celiac thing is no joke. I'm still waiting on results but it's not looking so great for me-here's the story-I'm 42, have had JRA (juvenile rheumatoid arthritis) well, since I was a kid...and lactose intolerance since birth (like I almost died form malnutrition then because couldn't tolerate milk)-as far as the JRA goes, I'm just on the right side of remission, have been for years, am relatively healthy and grateful for it altho do have osteoporosis due to past med routines, etc-so last xmas suddenly started experiencing what I can only describe as vibrating in legs...then arms. Because tests in past have shown fractured lumbar discs-no symptoms, no pain thank God-went to neurologist who did blood workup, cervical mri (no idea to this day why cervical) , he said all things considered I was good, blood tests normal- then to ortho doc said I had nerve impingement and needed to start injections for pain (he told me this immed. after I told him I had no pain) so finally took the whole ream of tests over to my PCP who, looking over the blood results noticed I had NO B12-well, you know-a little. So, 12 B-12 shots later, new blood test and guess what-still NO B12-and that's when I learned about celiac.(malabsorption and all) So, from all the reading I've done, I'm thinking it's not looking so great...although I really don't have GI distress I am constantly bloated, which I figured was from my inability to pass on ice cream. I've had so many med issues since childhood that I tend to ignore the little bothersome things like that. Reading about triggers for celiac disease-I also meet criteria-had shattered AC joint and collarbone (the AC element undiagnosed for 5 months-gotta love my doctors) subsequent surgery 2 yrs ago. (injury/surgery)Also experienced a tragic event in the family last fall, shortly before the onset of the vibrating extremities phenomenon.(stress) So...currently am eating as much gluten-laden food as possible in anticipation of being cut off soon. The specter of fatal lymphoma after/if dx'd I'm sure will be motivation enuf to adhere to this crazy gluten free diet- once I get the word. I know it's kind of dumb of me but you know, rationalization and all. So why I am writing this? Idk-therapeutic spewing I guess. But I do have SOME questions...the main fear I have is-what about CHOCOLATE??? Can we eat chocolate? Cuz really...is life without chocolate worth it? Also Big Time question-I am somewhat of a vegetarian by preference really, nothing ideological or anything-but dang-how can a vegetarian live w/ out grains?? Ya know? Looking over the dietary restrictions, they pretty much include my entire diet. Does this mean I will have to eat meat? What about beef jerky (the only form of meat that doesn't make me gag) Fish I can do but what about sardines? Can I still eat those? Oatmeal? Aaaaah.....any/all advice much appreciated. THANKS! Oh one more thing-any advice on finding a doctor who can sit down and actually LISTEN to a white 42 yr old woman...that would be nice...because it really seems like I'm invisible.

[home-based-mom]

Welcome to this oh-so-helpful forum! I can't answer all of your questions, but I can get you started.

Gluten is found in wheat, barley, and rye. For various reasons, many gluten-intolerant people also cannot eat oats.

Nowhere on that very short list do you see chocolate or sardines. In fact, if you shop around the perimeter of your grocery store where the fresh and frozen meats (and fish) and produce are found, you will spend less money while you eat better food. You do not have to eat meat - there are several vegetarian board members who can help you get started.

You will need to spend a lot of time reading labels on processed food packages because many of these foods have wheat or barley malt in the ingredients list.

You said you do not have GI issues but mention being bloated. That is a GI issue.

As far as doctors go, your PCP sounds OK but you definitely need to dump the neurologist and the ortho. They both sound downright damgerous! I think there are board members in the NYC area who might be able to point you in a better direction.

In the meantime, spend time reading other posts, You will learn a LOT!