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My Celiac Story


yllehs91

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yllehs91 Apprentice

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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MySuicidalTurtle Enthusiast

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

tom Contributor

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.

stargirl Apprentice

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.)

MySuicidalTurtle Enthusiast

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!

stargirl Apprentice

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.

  • 4 weeks later...
Merika Contributor

Hi Stargirl,

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

Merika


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MySuicidalTurtle Enthusiast

How is any chocolate, even dark, lactose free?

tarnalberry Community Regular

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.

Merika Contributor

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

MySuicidalTurtle Enthusiast

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

yllehs91 Apprentice

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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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
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      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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