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My Celiac Story
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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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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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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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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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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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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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Hi Stargirl,

Almost any dark chocolate is dairy (lactose) free :)

Merika

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How is any chocolate, even dark, lactose free?

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

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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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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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