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

How To Help A Teen Adjust?


Mickide

Recommended Posts

Mickide Apprentice

My younger sister (16) and brother (13) recently have had positive bloodwork. They have not seen the GI yet and have to wait until Nov/Dec for they're appts. I don't think there is much question on wether they have it or not seeing as I have celiacs. Are there any resources to help teens adjust? I had a hard enough time myself in my 30's, I can't image how tough it is going to be for them. My brother is active in boy scouts, my sister in band, etc.. Not to mention bouncing back and forth between my mom's and my dad's.

I am just trying to compile some info for them to help them get started.

Also my other sis in her 30's is getting tested next week, although she already tested positive for a wheat and gluten intolerance a few years ago. Not sure how that test is different but she does not comply to a gluten free diet. So it looks like there is a good possibility that 4 out of 4 kids have it!

Thanks!!


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



Celiac.com Sponsor (A8-M):



confusedks Enthusiast

Hello,

I am 17 and was dx'd in May after a long list of health problems finally led to the diagnosis. It will be difficult for them to adjust, but they have you and your support. I am also starting a teen support group in the Los Angeles area, so if you want to give either or both of them my email address, feel free. It is knshore@hotmail.com I would be more than willing to give them support because I went through a hard time when I first went gluten-free and didn't have anyone to talk to about it. The biggest thing is for them to try to not eat many gluten-free replacement foods when they are healing. Also, don't overdose on any one thing. For example, I also was dairy free and was using a lot of soy replacements for dairy, but then I developed an intolerance to soy because I ate so much of it. This is very common in this thread and other celiacs I know. Overall, this diet has been a great change for me, I have the healthiest diet out of all of my friends. They all are jealous of my good lunches because they eat wonder bread with bolonga. LOL! :D Also, make sure your parents are together on them being gluten-free (even though I think you said they're divorced.) Your parents will need to make sure there is always food for them to eat such as granola bars, etc. It is definitely going to take a little, okay A LOT of adjustment, but this is the best diagnosis to me. The prescription is to change your diet!!! It's not like we are stuck to 25849743 pills a day. Again, please feel free to have them email me, or if you want to, I am more than happy to help.

I thought of something else, is there any way YOU could take them shopping and show them things that they can eat and have them read the labels so they understand what they can and cannot eat. The list on this sites "site index" is a great list to help with label reading.

Good luck and it's great to see your concern! :)

Kassandra

Mickide Apprentice
Hello,

I am 17 and was dx'd in May after a long list of health problems finally led to the diagnosis. It will be difficult for them to adjust, but they have you and your support. I am also starting a teen support group in the Los Angeles area, so if you want to give either or both of them my email address, feel free. It is knshore@hotmail.com I would be more than willing to give them support because I went through a hard time when I first went gluten-free and didn't have anyone to talk to about it. The biggest thing is for them to try to not eat many gluten-free replacement foods when they are healing. Also, don't overdose on any one thing. For example, I also was dairy free and was using a lot of soy replacements for dairy, but then I developed an intolerance to soy because I ate so much of it. This is very common in this thread and other celiacs I know. Overall, this diet has been a great change for me, I have the healthiest diet out of all of my friends. They all are jealous of my good lunches because they eat wonder bread with bolonga. LOL! :D Also, make sure your parents are together on them being gluten-free (even though I think you said they're divorced.) Your parents will need to make sure there is always food for them to eat such as granola bars, etc. It is definitely going to take a little, okay A LOT of adjustment, but this is the best diagnosis to me. The prescription is to change your diet!!! It's not like we are stuck to 25849743 pills a day. Again, please feel free to have them email me, or if you want to, I am more than happy to help.

I thought of something else, is there any way YOU could take them shopping and show them things that they can eat and have them read the labels so they understand what they can and cannot eat. The list on this sites "site index" is a great list to help with label reading.

Good luck and it's great to see your concern! :)

Kassandra

Thanks for the reply.. I want to help them out as much as I can but am the older one and not one of they're friend, KWIM?? also they live in Ohio and I in Texas so I only see them a few times a year. I can email and help them out on the phone but know they are going to want to talk to others they're age. Thanks so much for your email I will pass it on!!

Mom23boys Contributor
:D Also, make sure your parents are together on them being gluten-free (even though I think you said they're divorced.) Your parents will need to make sure there is always food for them to eat such as granola bars, etc. It is definitely going to take a little, okay A LOT of adjustment, but this is the best diagnosis to me. The prescription is to change your diet!!!

I would also encourage both parents to get tested. I must assume you all got it from somebody's genes.

JNBunnie1 Community Regular
I would also encourage both parents to get tested. I must assume you all got it from somebody's genes.

I would suggest to them that they frequent this website, and that they get in touch with their local celiac support chapter, if there is one in their area.

ShadowSwallow Newbie

I was diagnosed a little over a month before my 17th birthday. Post-daignosis I actually have the energy to do all those things my friends were doing that I couldn't keep up with.

I found it very liberating (after reading every book I could get my hands on and educating my family about what I could eat (good thing, too, since 2 others have just been diagnosed Celiac)). :)

Green12 Enthusiast
I would suggest to them that they frequent this website, and that they get in touch with their local celiac support chapter, if there is one in their area.

I second this suggestion.

I also think getting them in contact with other kids their age, either through this website or a local group, who are going through the same thing would be very helpful- for support, sharing info and coping strategies, etc. Check out the Teenagers section.

They need to know that they aren't alone, and that there are many kids out there living their lives succesfully with celiac.

I have also heard about Celiac summer camps, you might want to look into that for them.


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



Celiac.com Sponsor (A8-M):



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
      133,145
    • Most Online (within 30 mins)
      7,748

    Marsu
    Newest Member
    Marsu
    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

    • 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.