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Coping With Mis-diagnosis


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10 replies to this topic

#1 GEF

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Posted 29 August 2004 - 05:03 PM

I'm writing this because perhaps there is someone else who's hearing the same thing about those with a prior diagnosis that's being reversed.

I have a co-worker, with whom I happened to share the gluten-intolerance issue with who mentions to me that his mother was diagnosed with this about 15 years ago. (here I am thinking, wow...) Then for some strange reason a doctor tells her that she has never had this problem, she should never have gone gluten-free. So, guess what? She's now off the diet after all of those years. ok... :blink:

Then, my grandmother mentions that one of her friends had the same thing.. years and years on the diet, only for a doctor to reverse the diagnosis. She is now also off the gluten-free diet. ok... :blink:

Shame on me for not asking what the issue "really" was, but I didn't think about it until later. Here I am talking with my family and friends about the change in my life and I'm hearing all of this refuted information... that's why I put this in the "Coping" section rather than the "Doctors" section because they all make mistakes (they're human like us). Believe me, this by no means will deter me from going gluten-free and sticking strictly to it. I know I have a problem with gluten... there's no doubt in my mind.

I just had to get this off my chest, as I've heard this issue twice in the past month! I wonder if the 2nd doctors in these cases knew that if their patients were on a gluten-free diet, the blood & biopsy wouldn't show anything unusual. I wonder what led the 1st doctors to give the diagnosis in the first place (I'm assuming it was more difficult then to get a diagnosis than now) What are these doctors doing? Maybe this should be in the "Doctors" section after all... :blink:

Gretchen
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#2 burdee

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Posted 29 August 2004 - 10:18 PM

That's why they call it a medical 'practice'. They are all still practicing and WE are their guinea pigs. :lol: Maybe someday they will get it right. Sometimes practice makes perfect. But I'm not so sure with some doctors who are working with outdated celiac 'profiles' and other celiac myths and misinformation. <_<

Fortunately we know our own bodies better than any doctor can tell us with all their sophisticated tests. I still think reduction of symptoms following a gluten-free diet is a pretty good diagnostic test in itself. However, my second choice is Enterolab. :D
BURDEE
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#3 tarnalberry

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Posted 30 August 2004 - 06:17 AM

I don't know what to think of that. It seems... backwards. Yet another sign that a lot more education is needed for doctors who are going to toy in this field. (Though, quite frankly, any doctor who's been through basic bio-chemistry ought to be able to deduce from first principles that your test will be negative if you haven't been eating gluten, so there's really no excuse, even with a lack of education on the specifics of the disease.)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#4 Guest_PastorDave_*

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Posted 30 August 2004 - 09:46 AM

Celiac is one of the most mis-diagnosed problems in North Amercia. The reason is that Doctors here thought of it as a "rare" disorder. NOW they are starting to realize how common it is and are working harder to understand it. I think that if we were in Europe (where Celiac has been understood for longer) we wouldn't be hearing as much about the mistakes the doctors make. Sure they are human, and will make mistakes, but we will see less, I think, as the doctors realize how common Celiac is.
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#5 Mydnyt

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Posted 02 September 2004 - 04:54 AM

Celiac is one of the most mis-diagnosed problems in North Amercia. The reason is that Doctors here thought of it as a "rare" disorder. NOW they are starting to realize how common it is and are working harder to understand it. I think that if we were in Europe (where Celiac has been understood for longer) we wouldn't be hearing as much about the mistakes the doctors make. Sure they are human, and will make mistakes, but we will see less, I think, as the doctors realize how common Celiac is.

You should try being dignosed over in Australia - only how many years behind? lol
A thought on the diagnosis reversal though... is it possible that because they have been gluten-free for so long that they no longer have the symptoms on being tested (fairly logical if gluten-free), but that if they return to eating gluten it'll have to be reversed again?
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#6 GEF

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Posted 02 September 2004 - 05:07 AM

That's what I'm thinking, Mydnyt. I don't know what upsets me more... the celiac diagnosis loss of credibility or the fact that these people might still be celiac and are now hurting their bodies.

As beautiful as Australia is, I sure glad I'm not there through the diagnosis.
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#7 Mydnyt

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Posted 02 September 2004 - 05:28 AM

I'd just hope that they get themselves retested after being on gluten for a while and not wait for any serious symptoms.

Yeah, a bit behind everyone sometimes... but I've been lucky. Only 5 yrs before a new GP figured this out, and the only other prob I have my old GP picked up straight away :)
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#8 Canadian Karen

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Posted 02 September 2004 - 12:43 PM

I have had a diagnosis flip flop since 1989.

I was originally diagnosed with Celiac Disease back in 1989. After a year on the diet with no improvement, the dr. changed his diagnosis to Crohns. Well, 2 years ago, the bloodwork and biopsy confirmed Celiac Disease 100%. So I have been back and forth, back and forth.... Oh well, at least now I know 100% for sure what it is and just have to give it more time than 1 year (almost 2 yrs. on the diet and still no change in the diarrhea)......

Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#9 tarnalberry

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Posted 02 September 2004 - 02:11 PM

Karen, have you determined if you have other food intolerances that are contributing to the problem?
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#10 Canadian Karen

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Posted 03 September 2004 - 01:16 PM

Right now he has me on also a dairy free/sugar free/caffeine free/soy free diet along with the gluten free...... at least until I have the colonoscopy on September 28th. The results of the blood tests will tell us which way to go from here.... he is checking for numerous things, i.e. collagenous colitis....

I have to admit that since I have been dairy free, the gas and bloating have just about disappeared.... we just can't get rid of this darn diarrhea!!!!

Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#11 Guest_gillian502_*

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Posted 03 September 2004 - 01:43 PM

I'm right there with ya, Karen! I can't get rid of mine, either! Being gluten-free helped me gain all my weight back, and added a little energy, but nothing else has changed at all. My antibodies are still high and I still have lower back pain, abdominal bloating and pain, and a rapid heart rate. Being gluten-free wasn't the cure I was hoping for.
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