Diagnostic Strategyy?

[SuzuRocks]

Hi All,

I am a 59 year old woman. As a preschool child I had slow growth and digestive problems that were traeted with a restricted diet. I know wheat was "off the table" because on my bithday I had a jello cake. This diet did not last long. I do not recall any restriction in my grade school years and I don't recall digestive problems in grade school and later either and do not have such symptoms now. I had always believed that I had had celiac as a small child and had outgrown it. In 2003 I was diagnosed with hypothyroidism. Medication worked pretty well. However a couple of years ago I hear from some reputable sources that 1) you never get over celiac and 2) it can contribute to thyroid problesm. I did some investigating on the web,, then asked my doctor to send me for testing. It came nack negative. A few months later an endocrinologist tried again. Still negative. It was a blood test. I was eating substantial amounts of gluten regularly both times. I have tried going off gluten a few times and even without worrying about trace amounts subjectively felt better ie less fatigue, etc., but have never gone gluten free for a substantial amount of time.

Now I have high blood pressure which is apparently either due to or causing kidnety stress. I got sent to a kidney and hypertension specialist who sent me for a bunch of tests. He said they were for hidden infections, inflammation, etc. When they took my history I did not mention celiac (it kind of slipped my mind). Later walking home, the word "inflammation" struck me. I again went to the web and found out: 1) At least one kind of inflammatory kidney problem is correlated with celiac 2) Besides thyroid problems several other things that I or family members have had are correlated ie primary bilary cirrhosis, schizophrenia, sqamous cell carcinoma.

I don't know this specialist well and don't know how conservative he is. I did not look closely at the list of tests he sent me to get so I don't know if he is testing me for celac again on his own initiative without me bringing it up. However, especially if it is an inflannation problem, given my history and despite the negative antibody tests, I would like to try a gluten-free diet before going anywhere near steroids or any of the stronger, more invasive hypertension meds. How do I strategize this? I want this doctor to support or at least tolerate this experiment.

[Takala]

This advice is based on my personal experience.

Every doctor I have gone to has not suspected celiac or gluten intolerance was causing my chronic kidney problems/infections before I went gluten free. They did not test for it. They never found anything wrong with my kidney function, bladder, or anything else, and only found idiopathic (cause unknown) protein in my urine and a lot of calcium crystals. This was combined with a lot of early age bone loss. I was alternately told to take calcium and not take calcium supplements by whomever looked at me last. Finally a very wise urologist told me to not take calcium in the form of "Tums," or calcium carbonate, because that was making it worse. I got a copy of one of those ob-gyn books by an alternative type practitioner, Christiane Northrup, and she said the same thing, but to instead take calcium in a different form, such as calcium citrate, because that would be absorbed instead of landing in the wrong place, because Tums affects bicarbonate blood levels. Voila! That seemed to help a lot, but I never totally ditched the problem until I went gluten free.

Theory is that since the kidneys are filtering your blood, to regulate calcium levels, and because you, as a celiac/gluten intolerant, don't absorb calcium in the correct way because of damage, they scoop up the excess from the bone loss also, and it ends up in either the kidneys or the bladder as crystals or stones. And unhappy kidneys will send up your blood pressure, besides making your back hurt all the time. NSAIDS and Tylenol make this worse, btw.

Because I do not have a formal celiac diagnosis, there is not a way to "prove" that gluten intolerance had anything to do with it. However, since I do have doctors who have seen me go from chronic bladder/kidney problems to not, I do tell them about it and they are very interested, as I am not in their offices 6 times a year anymore begging for antibiotics for this. It is a tremendous relief to not having this constant threat of infection hanging over my head anymore. I still drink more water out of habit than the regular person, and I am constantly working to keep myself well hydrated. I take calcium/magnesium/D supplements in the forms that do not bother my kidneys, as mentioned above, plus a B complex and multivitamin.

It was thought years ago that children outgrown celiac. They don't. Most people still go undiagnosed, and of those that are, they still do not get a diagnosis until they have other chronic conditions show up as a result of the damage. You may not ever get a "formal" diagnosis, but if you have both the symptoms and feel better on a gluten free diet, that is your answer.