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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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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    • Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have!  As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 
    • Sorry for the very late reply and thanks for the replies, I didn't get a notification of any. In case anyone else comes across this and has been wondering the same as I was, I did try a vegetable broth and I did react to it in the same way as if I'd eaten the vegetables.  As for the candida, I've been using coconut oil and am seeing a medical herbalist for this and leaky gut. It's only been a few weeks but I've noticed an improvement all round.
    • What did you drink and where did you drink it?   NOTE if you drink something at a bar using their glasses your asking for trouble BEER IS EVERYWHERE in most bars and a CC hell.   If it was at home and a non grain based liqour then I would be really concerned that it might just be alcohol. I personally can not really drink much of anything any more. I love rum, and I cook with it sometimes in sautes. I also have rum extract/butter rum extract/and rum emulsion I use in shakes, homemade keto pudding/ mixed into dishes. and even add some to drink to give it a rum flavor lol.
    • I can only think of two things, 1 something you put on your potato was contaminated like the butter container could have crumbs in it or something like that as mentioned before, and you could be having a reaction to dairy or what ever was put in it.......IF it was just plain potato and you reacted with bloating and cramping you might have a carb issues, tad rare and most associated with additional auto immune diseases but could be in which case a diet of fats and protein would be your answer much like it is for me now days. What all have you eaten in the privous 8 hours including beverages, condiments, spices and foods?
    • They are gluten-free.  Did you use butter that might have gluten crumbs on it?  For me , it takes more than 2 hours to feel the effect of gluten- maybe something you ate before?  Maybe  stomach virus?
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