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
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    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

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.