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Dear Friends,

I recently got my blood tests back, and the antibodies came back in the "acceptable range."  However, I've really benefited from the gluten free diet, as has my daughter, age 22. 

Looking back, I now realize that prior to getting the blood test, I had been on a low gluten diet... I normally only ate 100% sprouted grain breads (which is very low gluten) for the past few years. I did eat pasta once every week or two. This was for health and weight control.

In addition, prior to getting the blood test, I had put myself on a 14 day elimination diet (no wheat/dairy/sugar/soy/eggs/peanuts/corn) because I knew SOMETHING was up with food. This really helped me sort things out. During that 2 week diet, I had the strong intuition to get checked for the sprue. So I added in a good dose of wheat the day before my test. (I was new at this... I know now that is not ideal). It brought a very strong and immediate reaction: gas, stringy stools, bad urinary incontinence, and emotional irritability. 

So, I can either assume the blood test was "false negative" or I am simply very sensitive to gluten, but perhaps not celiac. Can "gluten sensitivity' cause serious problems on the side? A hand x-ray 5 years ago suggested bone thinning more typical for a woman almost twice my age. I'm getting a bone scan on May 20. 

I've gotten to a place where my bladder is now very good if I avoid gluten/soy/sugar/corn. I've added in yogurt, and that helps me very much. And that is consistent with the leaky gut aspect...Blue green algae has also been helpful  - it has GLA which is healing for leaky gut syndrome.

The incontinent bladder issue may be a built-in regulator, because it seems that this factor only "improves" in people if they avoid the trigger foods seemingly forever. It doesn't seem to truly "heal".  If I actually do have undiagnosed celiac, this would then be a blessing-in-disguise because it would keep me on the diet for life. However, if that symptom should ever heal, truly, then I think I would need to do a proper gluten challenge ( 2 weeks) followed by Dr. Fine's tests. Has anyone had this symptom truly heal? In other words, did there ever come a point in which you could eat the trigger foods without this reaction in the bladder?

I am also concerned by the stories that suggest further nerve damage was done to some individuals by doing a full gluten challenge in order to get a good blood test and biopsy. I feel that enough damage has been done. I also respect Dr. Fine's statement that one's response to the diet is one method of diagnosis. Anyway, I guess that means I am electing to be part of the great masses of the self-diagnosed. 

There has been diagnosed celiac sprue (biopsied) on both sides of my family (second degree relatives). My heritage is Irish/ English/Welsh.

Of course, celiac sprue is more dangerous than generic gluten sensitivity, especially over the long term. So that is why, given the strength of evidence despite my recent blood test, I feel it is still better to presume celiac sprue until convinced otherwise, in order to avoid further damage.

Any feedback and insights are welcome. Thanks for your help.

Joy!

Mary
California

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