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My Celiac Story


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11 replies to this topic

#1 yllehs91

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Posted 27 December 2004 - 11:34 PM

I'm 13 and all my life--well, since I was about 3-- had diahrrea :unsure: My mom asked my doc. about it and he said I'd grow out of it (this was when I was about 6 or 7). Then this passed Sept. I got a bad stomach bug. I couldn't hold down any of the food I was eating--I'd barf it up--and I was of course, still having diahrrea. I went to the doc. (bcuz my ankle had an infection from a cat scratch) and while I was there, my mom asked for me to be tested for anemia bcuz I was always really pale and tired. When the blood tests came back, I had a slight case of it but what worried my doc. was my potassium level was only 2.2 (normally it should be between 3.5-5.5). He figured it was a mistake and asked me to come back and redo it. I took the test a total of 4 times--twice at the doctors office and then twice @ the hospital so they could immediately get results. The 4th test came back as 1.7 so they admitted me to the hospital. After being in there with an IV and telling my doc. about the diahrrea, he got the GI (gastrointeroligist) doc. to see me. She began doing stool and urine tests and found that there was something weird about the Celiac antibodies. I was diagnosed w/ the disease Sept 27, '04. I began the diet and still have diahrrea, but have since been tested on and they found out I also have lactose intolerance (which is pretty common to come along w/ this disease) so now I take lactaid pills.. still have diahrrea and don't feel any different, but I'm on potassium pills and am thankful I'm not in the hospital. Hopefully w/ time I'll get fully better, and as for now I'm doing my best to stay gluten-free. It's hard bcuz I have 3 siblings who love to eat burgers and stuff... and so do my parents. But I try my best not to complain since there's nothing I can do about it. It does get frustrating alot but if it'll keep me out of the hospital and someday where I'll be better and w/o diahrrea, I'll deal w/ it. If you're newly diagnosed, don't give up, and don't cheat (bcuz I did and it's a stupid thing to do)...good luck and if you need any help -- even tho I'm still new at this too --- aim: scoutnboys1991....msg me anytime.
*May God Be With You All*
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14/f/tx diagnosed 9/27/04

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#2 MySuicidalTurtle

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Posted 03 January 2005 - 08:39 PM

Hello! Thanks for sharing your story. You're right about sticking with it and soon you will hopefully get to see life without being sick.


Kristina
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#3 tom

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Posted 04 January 2005 - 01:37 PM

My diarrhea and nausea didn't go away until i also eliminated casein (another component of milk).
I had thought that every GI would know to try going casein-free when diarrhea doesn't stop after being both gluten-free and using lactaid.
There's no pill for casein tho, so it means going pretty much completely dairy-free. I'd thought I'd miss milk and cheese SOOOOOOOOOOOO much, but finally being free of nausea and diarrhea is better than any cheese i ever had.
I even kind of like the Silk soymilk - something i never imagined i'd say.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#4 stargirl

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Posted 04 January 2005 - 06:43 PM

That is the one thing I haven't managed to do. I have been firmly and strictly gluten free for a year and have some small reactions to dairy. I can't make myself give up lactose products. I willingly gave up gluten and felt so much better but this next step seems like too much. I'm still trying to decide if I am going to give lactose or not, it just seems like too much. (Which I know sounds horrible to those of you who have had to cut out so many things, I'm sorry for sounding whiny.)
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#5 MySuicidalTurtle

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Posted 04 January 2005 - 07:32 PM

Maybe you should just try it a little. It's not that bad not having lactose. I sometimes give it up for weeks. You may feel real good without it and it'll be worth giving it up!
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#6 stargirl

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Posted 06 January 2005 - 03:20 PM

I've cut some out. My brother is highly lactose intolerant so we don't cook with lactose anymore and I never drink milk. I can't bring myself to give up cheese and chocolate. Those are the two things I can't convince myself to give up.
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#7 Merika

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Posted 29 January 2005 - 06:09 PM

Hi Stargirl,
Almost any dark chocolate is dairy (lactose) free :)
Merika
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#8 MySuicidalTurtle

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Posted 29 January 2005 - 07:03 PM

How is any chocolate, even dark, lactose free?
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#9 tarnalberry

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Posted 29 January 2005 - 07:14 PM

Because milk is not an ingredient in dark chocolate. The only reason real dark chocolate might have dairy is contamination on a line, and that would be small enough that there'd be no problem lactose wise.
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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 Merika

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Posted 29 January 2005 - 07:18 PM

Hi,
Maybe you're thinking of cocoa butter? Thankfully, this has nothing to do with actual dairy butter. From the web cocoa butter is "the whitish yellow fat extracted from cocoa beans during the manufacture of chocolate and then added back at a later stage". It's part of the processing of the cocoa plant (which is gluten-free :) ).

Now, MILK chocolate has dairy in it. And various flavors and candy bars and all sorts of chocolate items may have dairy added, but a dark chocolate bar of decent quality (lots of cocoa, few additives) should be dairy/lactose free. As always, read the ingredients.

:P Merika
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#11 MySuicidalTurtle

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Posted 29 January 2005 - 07:21 PM

Tarnalberry, I wasn't think about real dark chocolate! Hahaha, very cool.
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#12 yllehs91

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Posted 29 January 2005 - 09:56 PM

hey....well i still feel sick and ive been staying gluten-free (for all i know). but i stopped taking lactaid pills bcuz they didnt appear to be doing any good. :-\ maybe i should try not having anything lactaid for a week or so and see if it helps. thanks for the ideas everyone.
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14/f/tx diagnosed 9/27/04


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