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From:
gary durak <[log in to unmask]>
Reply To:
gary durak <[log in to unmask]>
Date:
Sun, 23 Jul 2006 20:43:45 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hi listmates,

I was diagnosed with gluten antibodies about two years ago.I have the typical abdominal symptoms of classic celiac disease, but I don't have celiac disease.  I have had terrible neuropathy in my legs, and we explored every test in the world to find etiology.  The only thing we found was very high anti-gliadin antibodies, and elevated lipase enzymes. No one paid too much attention to the lipase elevations until now.  Here is my situation and my questions. I would appreciate any feedback any one might be able to share.

I am not celiac, but gluten intolerant.  I also have severe dairy intolerance.  My diet is very narrow.

When I went on the gf diet, and also eliminated all dairy and oils from my diet, I did feel much better, although the neuropathy was still there.  The intensity goes up and down with what I eat.  If I eat only rice and bananas for several days it almost goes away entirely.

After I went to one of the major centers for Celiac Disease, and was told that I don't have the genes for Celiac Disease (I was told I have an intolerance and that I could cut out gluten if it made me feel better, but that I didn't have to) I 
came home and splugered on gluten and dairy, just for a couple of days.  I got really sick. It has been 7 weeks of feeling really sick.  I have been gf and dairy free for about 4 weeks, but seem to be more sensitive to everything else now that I went off my diet for only one week.  I have gotten really discouraged and now I can't seem to get myself back on the strict diet I was on, despite the return of all my symptoms.

Has anyone had this experience?  I am wondering how long it takes to recover from a splurge or indulgence?

Also, before I splurged, my anti-bodies had come down to just slightly above normal.  My lipase was also normal for the first time in three years.  I am wondering about correlations.  Does any one know if these two things go up and down together?

Last, I am having a CT scan done.  Since iodine allergy is in my family, and since I sometimes get hives from shell fish, I am doing the desentization (prednisone and benadryl) before the scan is done.  I am fearful of dong the scan without the preparation, but I am just as fearful of the effects of the prednisone (even though it is only three doses.)  Does any one have experience with this routine?  Has anyone here ever gotten sick from the limited dosing of the prednisone?  I would be interested in hearing what others experience with this procedure might have been.

I do feel I should have the CT scan done, since it might help to identify if there is something else going on besides gluten and dairy intolerance.

I am hearing a lot about "leaky gut' syndrome.  Does anyone relate to this?

I know these are a lot of questions, but I am really feeling pretty nasty and lost for what direction to go.  First would be to get back on my strict diet, but I really think I should be able to eat more than these few foods.  So, if anyone has shared my experiences, or has experienced any of the above, I would appreciate to hear from you.

Regards,
Denise

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