Quote Originally Posted by channlluv View Post
...And Knot, thank you for telling me not to change my diet just yet. I was all ready to go out and buy a bunch of gluten-free stuff. Although just yesterday I realized that most of what I eat is gluten-free. Fruit, veggies, lean meats, eggs. I do drink milk occasionally with cereal, but other than that, I'm largely dairy-free, too. I have cheese every now and then. But I do eat bread. I guess too much of it.
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Roxy
The problem with the celiac blood test is that it is not exact enough...or in other words, there are a lot of false negatives and you have to be eating gluten at the time. I, too, was mostly GF prior to diagnosis -except binging on bread. My celiac was picked up via an endoscopy, because I was in so much pain that my doc thought I had an ulcer. No ulcer, but they found celiac with minimal damage (although I felt so bad I didn't think it was "minimal"). But the blood test done right after was negative for celiac- even though I still ate gluten. So I am an example of someone who has biopsy-proven celiac but negative blood work (plus I have the genes). What I'm saying, Roxy, is that your celiac test (or Person X's celiac blood test) may be negative but that person may still have the disease due to the inaccuracy of the blood test.

I agree with Knot to have your doc run the celiac blood panel first (make sure they run the "full" panel) but there is no harm in cutting out gluten entirely AFTER the blood test (unless your doc wants to run the endoscopy) to see what happens. If you cut out gluten entirely, strictly, and you feel better then you have your answer. Some docs say that a Gluten Free diet is "unhealthy" because you don't get enough vitamins, but with proper planning there is nothing inherently "unsafe" about a GF diet. What a GF diet has is less fiber and less vitamins added to grains (e.g. "fortified" cereals or "wonder bread with eight vitamins"). Fiber is easy to get with fruit, veggies and flax (and oatmeal for some) and vitamin supplements are as "natural" as fortified bread. If you or your doc are worried about diet, a nutritionist/dietician can help with that.

My doc sent me to a nutritionist/RD and she said that my body thought it was "starving" because it wasn't absorbing nutrients/vitamins/fat and thus it wanted me to gain weight. My metabolism slowed, my vitamin levels were low, and I developed osteopenia, the beginning form of osteoporosis. The body type that most often gets osteoporosis is a thin one, so my body was really not absorbing calcium and/or vitamin D. The 20 extra pounds I gained in the two years before diagnosis got my BMI up to 29 and so I was one of the 40% of celiacs who are overweight at diagnosis.

Losing weight (I have 20 to lose plus the 15 that I was overweight with before illness) has been frustrating. I am psychologically "addicted" to refined carbs and maybe physiologically too. Cutting out wheat, plus white rice, white potatoes, corn, and GF flours is about the only way that I can loose weight. I don't know if it is from celiac or from years of eating unhealthily, but I can't fight it. Eating simple carbs makes me hungry. In terms of diets, South Beach Diet Phase I or Atkins Diet or Paleo Diet all work for me losing weight...they all cut out the "white" foods.

Some folks think that gluten intolerance is a spectrum between low gluten intolerance at one end to celiac at the other. Others think it is all celiac, but our tests aren't exact enough.

I'm just a layperson with limited knowledge. But I know that gluten has done some pretty nasty things to me and my son, so I just try to get the word out to others and hope that they end up less damaged than I. Going GF has made a world of difference in my health and I'm very grateful.

Again, I wish you good health, Roxy, and good health to all.