Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Join Our eNewsletter:
    Support Our Content
    eNewsletter
    Donate

My Celiac Story


yllehs91

Recommended Posts

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*


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to yellowstone's topic in Coping with Celiac Disease
      3

      Has someone experienced discrimination because of their illness?

    2. - Scott Adams commented on Scott Adams's article in Spring 2026 Issue
      2

      When Home Isn't Safe: Celiac Disease, Cross-Contamination, and the Right to a Gluten-Free Space

    3. - Flash1970 commented on Scott Adams's article in Spring 2026 Issue
      2

      When Home Isn't Safe: Celiac Disease, Cross-Contamination, and the Right to a Gluten-Free Space

    4. - Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

    5. - suek54 replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      46

      Shaking/Tremors and Off Balance

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,942
    • Most Online (within 30 mins)
      10,442

    Sensible
    Newest Member
    Sensible
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Regarding the discrimination you asked about, it is a lot more easy now to discriminate when you're supposed to answer whether or not you have celiac disease on job applications, and from what I've seen, MANY companies now include this question on their applications:  
    • Russ H
      People with coeliac disease have an altered gut biome compared with those who do not, which may be associated with gut inflammation. Although the gut biome recovers on a gluten-free diet, there are still significant differences at 2 years. In a mouse model of coeliac disease, supplementation with the soluble dietary fibre, inulin, increased the number of beneficial microbes and reduced gut inflammation. Inulin is used by some plants as carbohydrate store, it is a complex polymer of fructose in the same way that starch is a complex polymer of glucose. Inulin cannot be digested by humans but serves as food source for some gut bacteria. Inulin is present in many vegetables but the richest sources are (g/100g): chicory root 41.6 Jerusalem artichoke 18.0 dandelion greens 13.5 garlic 12.5 leeks 6.5 onions 4.3 The Scientist: Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease    
    • suek54
      Hi Ginger38 Well done you for pushing through the pain barrier of eating gluten, when you know each mouthful is making you poorly.  I went through the same thing not long ago, my biopsy was for dermatitis herpetiformis. Result positive, so 95% certain I have gut coeliacs too. But my bloods were negative, so very pleased I went for the gluten challenge and biopsy.  Hang on in there. Sue
    • Scott Adams
      When symptoms like fatigue, brain fog, or low energy change how we interact, others sometimes misinterpret that as disinterest, rudeness, or negativity—especially if they don’t understand the underlying condition. That doesn’t make their behavior okay, though. You don’t deserve to be treated poorly for something outside your control. Often, it reflects a lack of awareness or empathy on their part, not a fault in you. It can help to explain your condition to people you trust, but it’s also completely valid to set boundaries and distance yourself from those who respond with hostility. Your experience—and your reaction to it—makes sense. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Being HLA-DQ2 positive doesn’t diagnose celiac disease by itself, but it does mean he has the genetic potential for it, so it absolutely deserves careful follow-up if symptoms or concerns are present. You’re right that celiac is often downplayed, but it’s a serious autoimmune condition—not an allergy—and it can affect the brain, nervous system, and overall health if untreated. Given everything your son has been through, you’re doing the right thing by advocating and asking questions. I would strongly recommend getting a full copy of his records, and if possible, consulting a gastroenterologist who understands celiac disease well so you can get clear answers and, if needed, proper testing and monitoring.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.