What Next? New Here....

[GeoffCJ]

So here's my backstory:

I'm 31, a little overweight, but very active (kayak, climb, ran till recently). I've been having health issues for at least 8-9 years, symptoms included-

Mostly stomach issues, gassy, bloated, loose stools, and needing to go -SOON- after eating. This was a daily, nearly every meal kind of thing.

At one point I thought it was Lactose Intolerance, but I went lactose free for 6 months and saw little improvement or change. I've been tested for parasites and seemingly all kinds of other things, and the best answer I've ever gotten was "Maybe you have IBS?" It was frustrating, and I presented these symptoms to several different doctors, and no one ever said "we should test you fro gluten/wheat issues"

My other symptom was I had frequent problems with my hands and feet going numb, sort of a "pins and needles" feeling. That got better when I took high dosages of B complex vitamins.

About 3 months ago, I decided I wanted to lose a few pounds, and went on the South Beach diet. Of course, the first stage you cut out all carbs, so I was mostly eating meat/veggies/dairy, and cooking most everything myself. My symptoms didn't go away completely every day (maybe because I wasn't consciously avoiding gluten, and it's "hidden" everywhere). But I felt much, much, much better. I had the first solid BM's in recent memory, I felt more energetic, and I could eat without eyeing the nearest restroom is.

I'm sharp enough to see the conection, and started doing a little searching around the internet. After reading one list of symptoms, and showing my wife, we both had a "whoa" moment. I went to a doctor, and told him what I'd found, and he agreed that it seemed to be worth looking into. We had the blood test, and it came back negative. He's said that he'll schedule me for an endoscopy, but 6 weeks later I'm still waiting, stupid HMO's.

I've been eating mostly gluten free, but not nearly as extreme as some people on this board, I haven't worried about whether my wife made a sandwhich on the counter, and I know I've slipped a few times, (soy sauce, rice a roni) and the results were predictable.

I guess my questions are -

Is it even worth the getting the endoscopy? I'm pretty convinced, and so is my wife, but are there advantages to getting a positive diagnosis, in terms of family/friends/insurance/doctors, etc?

Is a mostly Gluten free diet OK? I guess I don't understand enough, but if I slip and eat a cookie, is the damage done from one cookie enough to have long term health effects. My immediate reactions are noticeable, but I've been living with them for 8 or more years. My mom bought me rice crackers today, and they had no gluten in them, but the allergy info said they were made in a facility that processes wheat. Are those OK? I guess I just don't know what's enough. I mean, I have a freind with a peanut allergy, but for her it's easy, any contact=possible death, so there is no question. For me, it's not so clear.

How tough is it? I'm a very social person, and an entrepreneur. A lot of my life revolves around dining out.....

I'm at my parents for the holidays, and mom's baking is pretty damn tempting.

Anyway, you guys will probably be seeing me around here more. Not sure how I feel about that....

[GeoffCJ]

Oh yeah, the other thing I forgot to mention is that I was born in England, to Scottish (all of them) ancestry. Apparently it's more common in the british isles?

[tarnalberry]

The tests are worthless if you've been eating gluten free. The tests look for antibodies to gluten in your blood - if you haven't been eating gluten, you haven't been creating those antibodies, or have enough damage to give you good odds of the antibodies getting through a leaky, damaged gut to be at a high volume in the blood stream. You must be eating a gluten-FILLED diet prior to testing, as the only thing they can look for is a negative reaction to the protein.

If you are celiac, gluten-light is NOT good enough. Eating gluten as little as once a month (and by "eating gluten" I mean having a crumb of bread) leads to increased risks for cancer, other autoimmune diseases, nutritional deficiencies like anemia (which is sounds like you had a form of based on the results of dosing with b-vits) and osteoporosis, not to mention other complications.

[dionnek]

I read somewhere on here that it takes your body about 14 days to recover from one crumb of gluten (i.e. the damage that it does to your intestines), so if you are slipping up even once a month you will never heal. It makes sense to me, since I was glutened twice that I know of recently and both times it took 2 1/2 weeks for me to recover from the symptoms. Despite the damage that one crumb will do, they still say you need to be eating the equivalent of 3 pieces of bread a day for something like 3 or 6 months for the tests to show up positive - I don't understand that, but there is so much to this disease that I don't understand!