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

By Mickide
in Coping with Celiac Disease

Recommended Posts

Mickide Apprentice
Mickide
Posted

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
confusedks
Posted

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
Mickide
Posted
  • Author
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
Mom23boys
Posted
: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
JNBunnie1
Posted
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
ShadowSwallow
Posted

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
Green12
Posted
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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,677
    • Most Online (within 30 mins)
      7,748
    Nancy Magil
    Newest Member
    Nancy Magil
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.