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Those That Are Not Officialy Diagnosed


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8 replies to this topic

#1 dbuhl79

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Posted 29 November 2004 - 08:55 AM

For those that have done there own experimenting and feel they have a gluten intolerance, how do you explain it to others?

After not much success with my doctors in determining the cause of my digestive upset, I've narrowed it down to being wheat or a gluten intolerance. I even glutened myself this weekend accidentally felt the effects an hour or so later, and following day (today) still.

But how do you explain this to others, when you can't sit there and say "A test proved that I have this..." Even my boyfriend who has urged me to go gluten-free and strongly feels it is my solution, questions it now after I ate macroni and cheese not thinking during Thanksgiving and didn't suffer a reaction.

Does anyone else get those that react as though you're a just randomly self diangosing? How do you handle these reactions and comments?
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Positive Dietary Challenge, firmly believing gluten-free is the way to be!
gluten-free since Nov. 18, 2004.

Always learning along with the rest of everyone else... a never ending process.
Dana :)

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#2 BamBam

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Posted 29 November 2004 - 01:46 PM

I spent 12 years being misdiagnosed and refuse to eat gluten for 6 weeks or months to get tested. What do I tell people? I refer to what Pastor Dave said last month or so, that "eating gluten is like putting poison into my body." And that is what I tell people, that when I eat it, I feel really really sick, so I have decided to refrain from eating any form of gluten, because I feel better, that when I eat it, it feels like I am putting poison into my body.

Bam
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Montana
Self-diagnosed after many tests and no results to feel better
Gluten Free since 8-6-2005
Lactose free for many years
Casein Free since 02/14/06

#3 kabowman

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Posted 29 November 2004 - 02:00 PM

I tell people that I have food intolerances (which a lot of people assume are allergies and I no longer correct them) and cannot eat those foods. However, most people don't seem to understand that even crumbs (or steam in the microwave as I found out recently) is enough to make me sick. They just think I am a little psycho about it...

Only my husband and kids actually see how little it takes for me to get sick since they live with me day in and out...

I have come to look at the results of all the tests as good; they all came back normal/negative which means I am NOT sick. However, it does not explain why I have these intolerances and none of my docs can explain why either. They are all pleased that I have discovered them though and can feel better.

-Kate
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-Kate
gluten-free since July 2004

Other Intolerances:
Strawberries and Banannas (2007)
Nitrates (April 2006)
Yeast (which includes all vinegar so no condiments) (Oct. 2004)
Peanuts (Nov. 2004)
Soy (Oct. 2004)
Almonds (Sept. 2004)
Corn (Sept. 2004)
Lactose/Casein (1999)

#4 Deby

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Posted 29 November 2004 - 02:49 PM

I tell people that I had a positive dietary response. I have an advantage though in that my two boys have celiac confirmed through antibody and biopsy. I tell people that I stopped eating wheat after my first son was diagnosed and that I did it so I could experience his disease to know what it was like and to have sympathy. All of this is true. What I don't go on to explain is that I had many of the symptoms listed on the web and that I was so sure I shared his condition that I took myself off of gluten. I don't like to share "the symptoms", so I skip that part.

I do discuss celiac disease with anyone who asks though. Since I went undiagnosed for 15 years I think awareness is soooo important. I think people are becoming more aware. Now what we need is for grocery stores and restaurants to be as aware of our numbers so that we will stop being treated like some kind of wierdo one of a kind allergic person who is making the kitchen and wait staff suffer unnecessarily! :)
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Monica
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anti-body negative, self diagnosed, Gluten free since March 2001. Two sons (8) also have celiac. Antibody and biopsy positive. I love to cook and after much much experimentation can now get by pretty well!

#5 darlindeb25

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Posted 29 November 2004 - 03:03 PM

;) i too went undiagnosed for over 20 yrs--i was diagnosed with everything but celiacs---then my sister was diagnosed over 3 yrs ago, once she started feeling better--she told me i should go gluten-free too and it made all the difference to me---i dont feel that i owe anyone an explanation--if they ask what celiacs is, then i go ahead and explain it--i went gluten-free for me and if they refuse to understand, then that is up to them--i know i have celiacs or at the very least gluten intolerances and i will remain gluten-free for the rest of my life--to me it is a life or death decision--i was very sick all of the time and those days are over--i do not need a doctor to tell me i have it--i know i do :D deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#6 tarnalberry

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Posted 29 November 2004 - 07:31 PM

I just say that I'm gluten intolerant. I don't try to claim the celiac label myself, since I haven't had a biopsy, but say "It makes me sick." I'll mention damaging the intestines and digestive tract "issues" if they ask further, and if they're still inquisitive, I'll go into it further.
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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

#7 stef_the_kicking_cuty

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Posted 01 December 2004 - 06:46 PM

You will not always get a reaction, when eating gluten, but that doesn't mean you don't have it. What i try to explain here is, when you had a reaction with one glutenaccident since you went glutenfree, then you DO have problems, even if you didn't have a reaction when it happened again. Sometimes it can take years until you're back on your old symptoms. And the next thing is, that you don't have to tell other people, that you weren't diagnosed. This is none of their business. You have it and period...

Hugs, Stef
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Results for 2011:
1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting
August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)
gluten-free since 07/21/2004
Shermans Dale, PA

#8 dbuhl79

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Posted 02 December 2004 - 06:15 AM

Thanks to everyone who's offered their "responses". This will come in very handy when I see my family and friends in two weeks and introduce them to my new lifestyle.

You're right, Stef, its none of their business. Now to come up with the polite way to inform them of that! ;)

Thanks again, and you guys have some great attitudes, is very inspiring!
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Positive Dietary Challenge, firmly believing gluten-free is the way to be!
gluten-free since Nov. 18, 2004.

Always learning along with the rest of everyone else... a never ending process.
Dana :)

#9 num1habsfan

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Posted 02 December 2004 - 09:27 AM

The one family doctor I see calls it "Hard-To-Diagnose Celiac". All the specialists I saw, AND the new family doctor, doesnt believe its Celiac. But at least for income tax this one who says I have Celiac will write me the doctors note.
I started having severe stomach pains when I was 12. After xmas meals my stomach used to get so sore I had to go lie down cause I couldnt move and it hurt to breathe. It slowly started getting worse each year but I never payed any attention to it until it got REALLY severe. So I was undiagnosed for 7 years..
And I gave up trying to convince my family I have it..its no use!
And also for your family..remind them that you are going to be on this diet for life, so they gotta start getting used to it :P
~lisa~

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