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Member Since 07 Aug 2010
Offline Last Active Private

#643725 3 Years On, Still Sick.

Posted by on 03 October 2010 - 01:42 PM

Somehow drs always manage to make me feel like a criminal pleading my innocence.

That description is absolutely PRICELESS--and so true for so many of us!
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#639390 Top Five Reasons To Get A New Doctor

Posted by on 14 September 2010 - 12:46 AM

Forgot this one:

I describe recent Atrial Fibrillation to G.P. doctor and he goes, "That's not atrial fibrillation!" and proceeds to hammer me with "There's absolutely nothing wrong with your heart. There may be a psychological component..." I insist on a heart monitor test, and on the first or second night of wearing it, my heart goes into Atrial-fib at a rate of over 200 beats per minute and keeps this up all night long...

--Sorry, there wasn't any way I could make that little encounter "funny"!
(Will find out later this week, after I see a Cardio specialist, what if anything needs to be "done" about my so-called "psychological" A-fib!)

In the meantime, to the G.P.: 'YOU'RE FIRED.'
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#639389 Top Five Reasons To Get A New Doctor

Posted by on 14 September 2010 - 12:38 AM

Youngest DD went to her GI w/ research she'd done in the internet... desparate to find an answer to her symptoms that being extremely carefully gluten-free weren't solving at all. He saw her papers and said, "Oh great... you've been on the internet. Why don't YOU tell ME what's wrong w/ you?"

DD burst into tears and told him she was just trying to find ANY answers for her debilitating symptoms.

She never saw him again and sent him a scathing letter about his crappy "bedside" manner!

Good for her! More doctors need to be lambasted about their "crappy bedside manner"--not to mention their disdain for patients, their thin-skinned "professional jealousy" ("I'M THE DOCTOR HERE, NOT YOU" attitude), and their all-too-frequent lack of essential medical knowledge.
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#639286 Tell Everyone … Happy Celiac Awareness Day! - Vashon-Maury Island Beachco...

Posted by on 13 September 2010 - 02:03 PM


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#639283 Top Five Reasons To Get A New Doctor

Posted by on 13 September 2010 - 01:53 PM

And then there's this one...

Go in to doc (different GP) with severe Acute Pancreatitis of almost two weeks' duration, high fever, nausea, severe pain, incredible odorous diarrhea in technicolors of black & yellow hues, fatigue, even itchy cellulitis... and (male) Dr. surmises "You may have issues about aging."

Right! (The only time I've seen him since that brilliant diagnosis was when I nearly ran him down in the parking lot, out of sheer disgust... Good thing my Impulse Control was "ON" that day...)
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#637266 Disorganized And/or Dyslexic?

Posted by on 05 September 2010 - 03:33 PM

By the way, a related problem that plagued me during those early CFS-years, which has improved, was that I lost the ability to type! (Dyslexia or uncoordinated brain hemispheres at play, apparently...) This was devastating as my line of work involved editing/typing all day long and my typing speed with about 99.9% accuracy was around 115 wpm. Suddenly my fingers just got all tangled up and as soon as I'd type a word all wrong, I'd have to back up and retype it, and get it all wrong again.

I bring this up in relation to the brain-disorders that can accompany food allergies and other conditions like the "Chronic Fatigue Syndrome" that some people are now asserting might actually be unrecognized/undiagnosed Celiac Disease.

The encouraging thing is that, gradually with much perseverance, my typing has returned almost back to normal; the accuracy is still not quite what it was, but at least my "fingers remember" for the most part where the keys are and the hand-eye-brain coordination is much better. So there is hope.
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#637083 Gluten Intolerance Or Food Allergy On Cheeks?

Posted by on 04 September 2010 - 08:43 PM

and that's all i know about the red cheeks

LOL, cassP! Thanks for your red-cheek summary. In my case, I don't think hormones or alcohol had anything to do with it. I suspect in my case it might have something to do with allergies or acidity, since those stinko-Gingko tablets *always* make my cheeks red and bumpy, and I think I'm either allergic to something in them or maybe they're very acidic and trigger that red-cheek thing. What's funny is that I was taking the Gingko to improve my memory, and sure enough, as soon as I took some, I REMEMBERED WHY I STOPPED TAKING THEM! (Couldn't find a red-cheeked smiley-icon to include here...) Anyway, it's interesting to hear that others also have had the red cheeks and foods may've been involved.
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#635794 What's The Scoop On Maltodextrin?

Posted by on 30 August 2010 - 11:45 AM

To Richard and nora_n,

The post carrying those two links did not "recommend" or consider them either "right" or "flat-out wrong." My post was listing ingredients that I personally have negative reactions to, and was asking if anybody knew whether there might be a GLUTEN connection with any or some of them. Then the post said, "Found some links..." It is up to the reader to determine whether internet content rings with truth or seems wrong. (I myself am still in the research phase of many of these things.)

By the way, also found some items on my list of items that cause a HIGHLY ALLERGIC REACTION IN MYSELF discussed in "Dangerous Wheats," a book by Braly and Hoggan, including: Gelatin, Maltodextrin and Whey, which they listed under "Safe Sources and Ingredients in Flour, Caveat: Always double-check for risk of contamination)." They went on to list items that "may" contain gluten and acronyms that might spell HIDDEN GLUTEN, which included: HPP: HYDROLYZED VEG PROTEIN, MSG: MONOSODIUM GLUTAMATE, TVP: TEXTURED VEG PROTEIN.

Since I get the same terrible reactions to ALL the above ingredients listed in my initial post, I avoid them, whether the allergen is GLUTEN or GLUTAMATES or SOMETHING ELSE. Not everything is yet known about how these allergic reactions interact and how substances may be contaminated with or related to the protein(s) in gluten that cause such havoc for some of us. (It may simply be that Celiac disease causes damage that gets further exacerbated by other allergens, like whey, pectin, carrageenan, MSG, etc.) The best guide is to avoid what we recognize as a problem substance, which of course is not always easy to do when ingredients disguise themselves with names like "flavorings" and "seasonings," etc.
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#631302 Is This Celiac Disease Or Gluten Intolerance Or Something Else?

Posted by on 13 August 2010 - 01:39 AM

Thanks to all of you who have posted your thoughts in this thread. And yes, the thought of a "gluten challenge" does induce a certain amount of queasiness, based on recent SEVERE pain and problems after enjoying a carrot cupcake and, the week before, some pizza!

Have kept a journal for years that substantiates the growing suspicion (conviction?) that either wheat or gluten induces A LOT OF PAIN & PROBLEMS. It's just so hard to accept a future without pizza (somehow, it seems to be THE hardest gluten-laden food to relinquish!). However, last week we found a pizza that is "almost" as good as gluten-loaded pizza. Some of you may have already found and enjoyed it. It is by Glutino (their gluten-free breads are good, too); the one I tried was their "spinach and feta" model. I added some gluten-free pizza sauce, mushrooms and black olives and sprinkled a bit of fennel (the spice that's in Italian sausage) on it, and then followed their baking instructions. Surprisingly good!--albeit a bit pricey. I think it cost $5-something at Whole Foods. It really was more like a pizza-COOKIE, based on the small size. But it was tasty, actually SATISFIED my craving for pizza, and the crust was NOT BAD AT ALL. So maybe there is hope! :-)
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#630439 Is This Celiac Disease Or Gluten Intolerance Or Something Else?

Posted by on 09 August 2010 - 12:29 PM

I am not positive what that test is for but I have heard that you need to be eating four slices of bread a day for several weeks before the blood tests and biopsy.

Hi Dixiebell,

Wow--that's a lot of gluten! Based on how sensitive my innards seem to be toward gluten, don't think I'd make it past the first or second day of overindulging on gluten like that! (I'd definitely make it Pizza or Carrot Cake, instead of boring Bread, though! LOL)

It seems sort of crazy that we have to "repollute" ourselves with gluten, just to "prove" we have a problem with it. (Sort of like hitting your head with a hammer just to enjoy how good it feels when you stop!) Sigh...
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#630432 Is This Celiac Disease Or Gluten Intolerance Or Something Else?

Posted by on 09 August 2010 - 12:15 PM

Hi Lisa,

Thanks so much for replying. You said, "You may or may not have Celiac Disease, but it appears clear that you do have an issue with gluten." Boy, is that an understatement! LOL.

Have a feeling that more testing will be required for any solid diagnosis. Having the test result for the "Immunoglobulin A Serum" on the HIGH side is one thing that's confusing and there does not seem to be much info online about it. If anybody knows more precisely "what" it means to have a HIGH Immunoglobulin A Serum count, please advise. (i.e., Is this "Immunoglobulin A" referring solely to anti-gliadin antibodies or just an indication that there are lots of antibodies circulating in the blood that could be a reaction to other things instead of or as well as gluten?) (Apparently, high levels of Immunoglobulin A could also indicate kidney disease?)

Thanks also for the link to the University of Chicago Celiac Disease Center site. It has some very informative sections and it is inspiring that they're working so hard to educate and help folks with Celiac. It's also great that they have a Celiac Hotline: 773-702-7593.
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#630052 Is This Celiac Disease Or Gluten Intolerance Or Something Else?

Posted by on 07 August 2010 - 10:34 PM

Hello folks,

Just found this helpful site and would like to post a brief description of my situation and ask your opinion as to whether this sounds like Celiac disease, Gluten intolerance, or something else...

Quick history:
Developed C.F.S. (chronic fatigue syndrome) over two decades ago and have had many health problems ever since, especially digestive tract troubles. About ten years ago, on a flight across country, airlines offered a gluten-free meal, so I decided to try it, and during my ten-day vacation, I avoided all wheat flour and the like. Noticed immediately that the "midriff bulge" disappeared! Seemed to feel better during this dietary experiment, but soon went back onto gluten.

In recent years, have "experimented" with a gluten-free diet, because it seemed like I could not digest white flour (pizza, pastries, and so on) and always had clogged intestines whenever I ate things like pizza or shortbread, etc. After many bouts with G.I. troubles and pain, decided about three years ago to just go GLUTEN FREE and see what would happen. Have been MOSTLY gluten free ever since, but do once in a while "fall off wagon" with a pizza or dessert containing gluten. Recently (over the past month or so) had pizza and a carrot cupcake a time or two, and have had EXTREME PAIN and clogged intestines and swollen abdomen and soreness in midregion. Had always heard that Celiac Testing would be inconclusive if you have been off gluten for a long while, so had not been tested.

Test Results:

Recently needed to have other bloodwork done, partly because of all this PAIN & DYSFUNCTION of late, so I asked Doctor to add the Celiac Panel testing, realizing the results would probably be negative and not tell much. Just got the test results back, which were:

Endomysical Antibody IgA - Negative
t-Transglutaminase (tTG) IgA - 1 (Negative 0 - 3)
Immunoglobulin A, Qn, Serum - 526 High - mg/dL Range: 70-400 <- What does this test mean?

Given the above, does it appear that I DO or DO NOT have Celiac disease, or Gluten Intolerance; or are these tests inconclusive because of avoiding gluten for a long time, and then only eating gluten sporadically? Hope somebody can help clarify things, as this is all very confusing.

Are there other tests that would make my situation more clear, or is this enough, along with all my side-effects from eating gluten, to accept that my condition really is Celiac disease and that I have to be on a permanent gluten-free diet?

Other Symptoms/Conditions:
*Often have EXTREMELY ITCHY Skin, especially head, back and legs
*Severe Insomnia (ever since contracting C.F.S.)
*Hair loss
*High Blood Pressure
*Many food sensitivities
*Extreme Fatigue
*Heart Arrhythmias, including Atrial Fibrillation

P.S. The doctor, upon seeing these results, said "You might want to avoid flour..." ???
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