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):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Angryy 20 Year Old


WSLIZ

Recommended Posts

WSLIZ Newbie

Im only 20 years old and 4 days ago I was diagnosed with celiac.....my doctor left me with NO information other than a thin packet that wasnt really helpful. I am so confused about what i can and connot eat.....i feel like i cant go out with my friends to eat or out to a bar cuz im confused about what i will be able to drink. Im very angry and wonder if there is any way my doctors diagnoses is wrong.....I had blood work done that tested positve...and they are going with that? Is that really that accurate?? Anyones input would probly help right now.....Thanks!

~Liz~


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

yes, the blood test are that accurate and it will be hard for a while, but you will get used to being a gluten detective and yes, you will have screw ups, we all do--read everything you can in celiac.com--there are food list in here that you can find--they have name brand items we can have that are gluten-free--another good site is clanthompson.com --they have food list too--there are many good sites in the post in here for you to visit--do check them out--you are only 20--i wish i had been diagnosed then, it would have saved me so many painful years--my life is so much better now that i am gluten-free and sweetie--i havent been diagnosed by a doctor and i still know celiacs or gluten intolerance is my problem--keep your chin up and feel free to email me at my aol addy with questions--i will answer you with what i know or i will find out what you need--my sister is a licensed dietician who has celiacs--we help each other---deb :D

MySuicidalTurtle Enthusiast

Most doctors arn't too helpful and you have to do the research yourself. . .sadly it will take a long time to get the whole glutenfree thing down but it's all worth it and you'll get the hang of it.

There is a teenaers section on here too where a lot of 17-23 yr olds post and stuff.

You'll find that there are drinks for you to drink and you can go out to bars!

Kristina

Mballerina Explorer

If you have all the symptoms then you can go with the test being positive. If you have none of them then you should insist on a biopsy. I am 20 and found out about it two months ago. I have done 4 or 5 months of reading medical journals and still it is so frustrating for me on a personal basis. If you want to talk I would be really happy to be frustrated with some one else. Better to figure it out with someone else than just yourself. It's good for those moments of desperation.

stef-the-kicking-cuty Enthusiast

Hello liz,

it's normal to be confused at the beginning. But it's all getting better after a while. On celiac.com are a lot of food lists, you can print out. And also a lot of good recipes, you can make. Don't desparate. When you go out into a restaurant, you can't have beer as a celiac, but you can have a lot of other stuff. As a celiac you can drink most of the wines (if not all), because they are from grapes. And there is another list out there, from which i printed out two pages with alcoholic beverages. I can't find the list anymore, but i still have the pages i printed out. It's a really long list, but if you want i take the time and email it to you. So you can have other alcoholic stuff as well. If you want to drink non-alcoholic stuff, you can drink some drinks from coca-cola (i believe i also saw it on this list here on celiac.com) and from pepsi i think it's all drinks you can have. Just check back with the list and when you're in a club you can ask 'hey, are your drinks from pepsi?'. They should know. OK, if you have any other question, remember, you can always find support from all of these nice people here. This is a very helpful message board i experienced.

Good luck on your celiac journey, Stef

tarnalberry Community Regular

Give yourself a good three months to start feeling comfortable with this.

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. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

    2. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    3. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    4. - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

    5. - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

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

    • Total Members
      132,956
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.