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. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

    2. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    4. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    5. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

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

    • Total Members
      133,142
    • Most Online (within 30 mins)
      7,748

    Mark Conway
    Newest Member
    Mark Conway
    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)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Wheatwacked
      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
×
×
  • 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.