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regnad

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About regnad

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    http://www.bbc.co.uk/doctorwho/
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    Information/knowledge/media junky<br />Celiac diagnosed June 2006<br />Wheat allergy (suspected, self diagnosed)<br />Sleep Apnea (severe. successfully treated via BiPAP machine)<br />Restless Leg Syndrome<br />Gout (under control)
  • Location
    Chicago
  1. Happy birthday and may God bless you today!

  2. Misery loves company 8^) I'm still recovering, and suspect it'll be a week+ before I'm 'normal' - normal being a very fluid situation recently! Let's just call it an upward trend... Quick recap of symptoms from the attack: Extraordinary pain - in retrospect I realize that it's been very, very common (to a much lower frequency) for 13+ years (one tends to get used to these things... at least I did!). And I have had brief (hour or two) acute episodes. What made this last one noteworthy was the 30+ hours of pain that continually got worse (until, as above, it shut off). Impaired vision - doctor has postulated diabetes (I'm on the low end of pre-diabetic, just diagnosed) and my severe over medication for heart complications (down to undiagnosed sleep apnea) - my BP was at ~55/unreadable for a year or two before I switched doctors. Took me around 6 months to wean off: 300 mg metoprolol, 10 mg Norvasc and 200 mg Hyzaar (at one time that was up to 400 mg Metoporolol, 10 mg Norvasc and 300 mg Hyzaar. Needless to say I had tremors and trouble, uh, doing much of anything). In October I was totally freed from ALL of that and my BP finally bounced back (and got a touch high - 160/100 after a sleepless night) so I'm on 25 mg of Cozaar now, to protect against apneas. Doc thinks my Cpap machine needs tweaking. In any event, the blurred/double vision returned in force after the glutening and is now still a bit off. Corn cob colored stools returned - yesterday's was immediately followed by the soft-serve ice cream variety (ruddy brown though!). Am thoroughly happy to know that my intestines weren't completely mashed (over the undiagnosed period) and have the ability to bounce back. In fact, that's a guess I have about this last attack - healing was taking place, flattened vilii returning and nerve damage reversing. Wonder if you all have theories? Looks like my motor coordination problems and spelling issues (sigh... I used have immaculate spelling and grammar; nearly freakishly so). Had a neurological test (because of sleep apnea... really for insurance reasons, ultimately) and was found to have some mild impairment in impulsiveness, memory and coordination. Doctor had ascribed that to sleep apnea, but this neurologist was on the ball, and pointed out that the brain damage could also be from Celiac leaky gut (white blood cells (and glutens) escaping the intestine and running rampant in my body, attacking whatever's in the way). Doctor quite agreed - and I'm beginning to think that things like the arthritic symptoms and the eyesight might be the Celiac. Doctor's been working on figuring things out, but I think that he was unaware of the severity of my Celiac (see below). BTW, Lou Malnati's called back and I had a pleasant chat with the gluten free pizza designer. As you all know, it could have been anything, but it sounds like they do try to be very careful. 'Course, Christmas eve... who knows what coulda happened. My mind certainly wouldn't be on the job at hand... and it could well have happened at my end. Ah, now my doctor... it took some time for the diagnoses (3-4 months) and he was pretty tight lipped on it (no need to worry me, I guess). The 'elimination diet' came after he looked at my ankle. My ankle has ALWAYS had this psoriasis (not my diagnosis - but many specialist's diagnosis!). My mother thinks it first appeared pre-kindergarten. Always there, nary a remission. Sometimes it would get super itchy (to the point of pulling chunks out when itching w/ bloody mess... though little pain, really). At some point ~10 years old my OTHER ankle started to get it - that went away, though (few months)! Also, I had dropped something big-and-sharp on my right shin 2-3 years ago - the scab never healed and itched all the time. Doc looked at those (had shown the shin before) and looked at my finger nails and arms (have always had these pimply things there... also on my hack, sometimes on my face, and also on my scalp). Suddenly told me to cut the wheat out. Explained that he, himself was a Celiac! Now, to cut this short (too late!) I believe that a) I was terribly lucky to find him and that he has lumped me in with himself, regarding "Celiac". My guess is that he is self-diagnosed, and his knowledge is probably 'old' and often anecdotal (referencing himself). Doesn't distinguish between a wheat allergy and Celiac (hehe, that's a red flag) Never did a DNA test, as they 'rarely work'. Methinks he doesn't have Celiac, but a wheat allergy or intolerance. When I called about the pain from the attack he insisted I go to the hospital - he was convinced that a glutening shouldn't give anything like that amount of pain. I didn't, then looked up this thread AND faxed it to him. I believe (certainly hope so) that he's giving it a look through. Anyhow - what luck on finding him! Couple of hiccups, and never particularly got the 'seriousness' from him (comments like "maybe of it's just a little gluten" or "what if I peel the crust off of a pizza") were met with "I really don't think so..." Hehe... for me, now, those questions would illicit a bout of maniacal laughter <sigh> I just had to be born and live in Chicago. Oh, the pizza I can't have! The "world famous" pizza shops I drive past constantly! Stuffed, deep dish, doughy/thin, crispy/thin.... ugh. Superman in the Land of Kryptonite, I tells yah!
  3. Hey NicoleAJ - is that a Smooth Collie? Looks awfully similar to my pal Woody! On to my post... I just wanted to say that I found this post extremely helpful! I was diagnosed in June of '06 and have been trying my damnedest to stay gluten free. As you all know, the learning curve can be steep. About 1-2 months ago I cut anything with "flavorings" or "natural flavorings" out of my diet for the first time, and have restricted myself to very safe, known items (a short list A few weeks ago I ate some cheese (Jewel brand Pepperjack) and had a mild reaction - slightly itchy and I got the dermatitis hepeswhatever on my earlobe (again). Nothing major. For christmas I got a "gluten free" pizza from Lou Malnattis (they actual sell over the web, but we went to the resturant where they actually make 'em). Made with sausage in place of crust, with cheese and tomato sauce on top. Have had some many months ago and felt "safe". Needless to say, 30+ hours of hell (as described by you all, above) ensued. I had undiagnosed gout for a good 13 years and averaged about a stone or two a year - this was in that same pain ballpark (though my stones always, and I mean always, took 6-8 hours to pass). Like with the stones, I could _feel_ the food as it traversed my large intestine over many hours. This was painfully reminiscent of passing kidney stones - with those I could NOT urinate, so it was 6-8 hours of pushing. I could feel the contractions, feel where the stone was andwhere it currently sat, and would go into spasms (in the urinary tract) after each "push" - each push being perhaps 2 minutes apart on average. Ladies, I feel for you! (giving birth and kidney stone comparison). Sans the spasms and contractions, the experience was pretty similar. So, just wanted to say, thanks all! Saved me a trip to the emergency room (if it was gluten, as I expected, that trip would have been pointless I believe... woulda spent the whole time trying to convince them it was the gluten). It was unbelievable - just like passing a stone, my pain just 'went away.' The soreness is still there, and I'm a little shellshocked, but otherwise I'm just happy it's over! Still amazes me that such small amounts could do it... at a guess, I'm thinking the gluten was from flour floating around in the air. Maybe enough to coat the bowl of a teaspoon? And, wow, the agony it caused.... I had some vicodin I was hoarding (old practice I picked up from dealing with the kidney stones.... get it when you can then sit on it until you really need it). I popped 2 the first day (the pain was much less, and the pills helped). Come today the pain was 10x worse - popped 3 of the buggers and got the slightest amount of relief, but the pain came roaring back worse than ever. Popped 2 more (about 4 hours after the original dose) and nothing happened... about 2 hours after that the pain just stopped within about 60 seconds. I can't imagine it was the vicodin, but the pills did stick around long enough to mute all the general soreness for a feew more hours (kinda getting sore now... but as you all know, "sore" is like heaven compared to what preceded it). Q: did the pain just shut off for any of you either? There was nothing gradual for me, other than those 60 seconds or so. Kinda felt like someone using a dimmer to slowly turn a light off. Happy Holidays, all!
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