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6 replies to this topic

#1 pmrowley

 
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Posted 31 March 2005 - 03:46 PM

I've been a lurker on many Celiac forums for quite a while, and finally decided to "take the plunge" after checking out these forums for a couple of days. (You'd think I would have been more active sooner, as I've been a diagnosed Celiac for over 20 years now.)

A little history: I was bounced around from doctor to doctor when I was a kid, and underwent hundreds of tests to try to figure out why I wasn't growing, when I was supposed to be right in the middle of my pre-adolescent growth spurt. I was finally referred to the UC Med Center in San Francisco, where some experimental studies were being performed on a new diagnosis technique for celiac disease: Non-surgical intestinal biopsy. I think I was the second or third patient to undergo the procedure, and during the 8 weeks and 3 procedures during the diagnosis process, I saw a couple of evolutions of the biopsy device itself. (And was filmed for posterity during my first biopsy.)

Fortunately, I have a fairly mild case, from what I understand. On the RARE occasion that I have a contamination event, it usually results in about a day's worth of discomfort (mostly upset stomach symptoms.) Of course, as I've been on a total-exclusion diet for most of my adolescent and all of my adult life, I might have a more resilient gut at this point. ;) I just recently took the plunge and re-introduced oats into my life. I never thought I'd be so happy to have a bowl of oatmeal!

Needless to say, Can't say I have all or even many answers, but I do remember when gluten-free foods were few and far between, never mind eating at a fast-food restaurant! I'm used to having people look at me strangely when I explain my condition, but the advent of the Atkins diet has definitely made things easier in that regard. No longer do I get the crazy looks when I ask for a burger with no bun (and Protein-Style In-N-Out burgers are the BEST!) or ask for a salad, tossed in a clean bowl with no crutons. Hopefully, the day will come when Celiac is viewed in the US as something as important as a peanut allergy (and who didn't cringe when that happened, and all of the in-flight snacks on airplanes became Pretzels?!)

One thing I will mention though, to those who have tried a gluten-free diet, and are looking for a solid diagnosis for celiac disease; if you feel better being on an exclusion diet, why worry about the diagnosis? My wife, who is not celiac disease, joined me in my diet when we first started going out together. To this day, she says that she feels better and healthier on a gluten-free diet, regardless of whether she's a diagnosed Celiac or not. (Of course, she still eats the Fleming's Steak House creamed spinach, as her one concession, of which I am jealous of her to no end!)

Cheers,
-Patrick
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celiac disease diagnosed in 1980 by experimental biopsy procedure
gluten-free ever since!

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#2 Canadian Karen

 
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Posted 31 March 2005 - 07:22 PM

Hi Patrick! Welcome to the board!! :D

There are a bunch of really great people here who are always there for support, guidance and a pat on the back when needed!

Glad to have you aboard - your expertise and experience will be an asset here!

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......

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#3 flagbabyds

 
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Posted 01 April 2005 - 06:30 AM

Welcome! I know what you mean about there used to not be many gluten-free foods, I was diagnosed when I was a baby and don't remember Gluten containing foods, but I could never goanywhere without bringing my own food, but now I can. :) yes an exclusion diet is a form of diagnosis, many doctord don't believe in it but all you really want is to feel better. It is good that your wife is also feeling better on the diet. And if you want a firm diagnosis you would need to go back on gluten for 3 months which would not be fun at all :(

This is a great message board. I found it right when it started and even though I have lived with is for a very long time, I find new facts every day.
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#4 plantime

 
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Posted 01 April 2005 - 06:36 AM

Hi Patrck! Welcome to the board! It is always good to here from long-time celiacs, the experience is invaluable. The diet itself is a scientific test, at least according to my kids' science teacher! I felt much better on the diet, so I didn't go for any further testing. I got confirmation by biopsy when the gi doc was looking for ulcers. No ulcers, but he did confirm what the diet had already told me! The only reason I can see for getting a formal diagnosis would be for young kids to get a 504 and other help at school and day care. Other than that, what we eat is entirely within our control, and that means our treatment of celiac is ours to control, too.

Come back and post often, we love making new friends!
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#5 KaitiUSA

 
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Posted 01 April 2005 - 07:30 AM

Welcome to the board :D
Everyone here is great and so supportive ...come back and post sometime soon :D
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

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#6 pmrowley

 
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Posted 22 April 2005 - 03:02 PM

Thanks for the welcome! I've forgotten how good it feels to comiserate with fellow Celiacs. :) Reading everything is just what I needed to recharge my batteries! Every time I come off of these boards, I feel energized, and ready to fight the good fight again! ;)

Cheers,
-Patrick
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celiac disease diagnosed in 1980 by experimental biopsy procedure
gluten-free ever since!

#7 Rikki Tikki

 
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Posted 22 April 2005 - 03:45 PM

Welcome to the board Patrick. You will learn a lot of useful information here!
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Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"
"blood work show's a disease called celiac,
but it can't be that because it's rare!"
Diagnosed via blood and biopsy 2003


Not a medical professional just a silly celiac
offering support, my
experience and advice




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