Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
      131,134
    • Most Online (within 30 mins)
      7,748
    Sewingmomma
    Newest Member
    Sewingmomma
    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

    • Jenny (AZ via TX)
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Jenny (AZ via TX) · Posted

      Thank you both so much!
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Reading labels at dailymed.com is simpler if you’re familiar w/ gluten-free list of inert ingredients (aka ‘excipients’  allowed by FDA.      www.gluten-free.com has that list & I’ve included It’s below…. Tricky ones for me are the “4 D’s“ because names are similar. These 2 are gluten-free by ‘legal’ definition— •Dextrans - Partially hydrolyzed corn or potato starch. •Dextrose - Powdered corn starch. Other 2 need to be questioned. (Maybe ok for isolated 7-10 day Rx,   antibiotic?,  but gluten-free status needs to be verified for long term / daily use for chronic condition, like thyroid or BP meds.)   These are : •Dextrates - Mix of sugars resulting from the controlled enzymatic hydrolysis of starch. •Dextrins - Result from the hydrolysis of starch by heat or hydrochloric acid (from corn).  It can also be obtained from wheat, rice or tapioca.  (Maltodextrin on US labels MUST be corn so gluten-free.) Technically, ‘Starch’ on USDA ‘food’ labels in US must be from corn, & if not, the source must be identified.   In drugs,‘ Pregelatinized starch’ & ‘Sodium starch glycolate’ can also be from potato, rice, OR wheat.  Wheat is more likely to be found in products made outside of US (Europe) where corn is not the major(readily available & least costly) crop.     Hope this helps even though  learning sources of some gluten-free ones may make them less appealing. (And while the “Read every label, every time” for gluten is a pain, I’ve learned there are worse things than celiac dx—Allergy to corn would be at top on my list!)          Bev in Milwaukee From www.gluten-free.com EXCIPIENT INGREDIENTS IN MEDICATIONS  Aspartame - An artificial sweetening agent derived from aspartic acid. Aspartic Acid - A crystalline amino acid found naturally in sugar beets and sugar cane.  Benzyl alcohol - Made synthetically from benzyl chloride which is derived from toluene (a tar oil). Cellulose - (ethylcellulose, methylcellulose, hydroxymethylcellulose, hydroxypropyl, microcrystalline) – Obtained from fibrous plant material (woody pulp or chemical cotton). Cetyl alcohol - Derived from a fat source (spermaceti, which is a waxy substance from the head of the sperm whale). Croscarmellose sodium - An internally cross-linked sodium carboxymethylcellulose for use as a disintegrant in pharmaceutical formulations.  Comes from wood pulp or cotton fibers to form carboxymethylcellulose.  It contains no sugar or starch. Dextrans - Partially hydrolyzed corn or potato starch. Dextrates - Mix of sugars resulting from the controlled enzymatic hydrolysis of starch. Dextrins - Result from the hydrolysis of starch by heat or hydrochloric acid (from corn).  It can also be obtained from wheat, rice or tapioca. Dextrose - Powdered corn starch. Fructose - Obtained naturally from fruits or honey; hydrolyzed cane or beet sugar. Gelatin - Obtained from the skin, white connective and bones of animals (by boiling skin, tendons, ligaments, bones, etc with water). Glycerin - Historically, glycerin (also known as glycerol), was made the following ways: -  Saponification (a type of chemical process) of fats and oils in the manufacturing of soaps -  Hydrolysis of fats and oils through pressure and superheated steam -  Fermentation of beet sugar molasses in the presence of large amounts of sodium sulfite   Today its is made mostly from propylene (a petroleum product) Glycerols - Obtained from fats and oils as byproducts in the manufacture of soaps and fatty acids (may also be listed as mono-glycerides or di-glycerides). Glycols - Products of ethylene oxide gas. Hypromellose – A brand of hydroxypropyl methylcellulose (see cellulose). Iron oxide (rust) - Used as a coloring agent. Kaolin - A clay-like substance. Lactilol - Lactose derivative; a sugar alcohol. Lactose - Also known as milk sugar, is used in the pharmaceutical industry as a filler or binder for the manufacture of coated pills and tablets.   Commercially produced from cow's milk. Maltodextrins - A starch hydrolysate that is obtained from corn in the United States but can also be extracted from wheat, potato or rice. Mannitol - Derived from monosaccharides (glucose or mannose). Methyl Paraben – Comes from the combination of denatured wood alcohol and benzoic acid (benzoic acid occurs naturally in cherry bark, raspberries, tea, anise and cassia bark).  Polysorbates - Chemically altered sorbitol (a sugar alcohol). Polyvinyl alcohol – A water soluble synthetic alcohol (synthesized by hydrolysis of polyvinyl acetate). Povidone (crospovidone, copovidone) - synthetic polymers  Pregelatinized starch - A starch that has been chemically or mechanically processed.  The starch can come from corn, wheat, potato or tapioca. Shellac - A natural wax product used in tablet or capsule coating. Sodium lauryl sulfate – A derivative of the fatty acids of coconut oil. Sodium starch glycolate - Sodium salt of carboxymethyl ether of starch. Usually from potato but can be from corn, wheat or rice. Stearates (calcium, magnesium) - Derived from stearic acid (a fat; occurs as a glyceride in tallow and other animal fats and oils, as well as some vegetables; prepared synthetically by hydrogenation of cottonseed and other vegetable oils). Sucrose - Sugar also known as refined sugar, beet sugar or cane sugar. Titanium dioxide - Chemical not derived from any starch source used as a white pigment.  Triacetin – A derivative of glycerin (acetylation of glycerol). Silcon dioxide – A dispersing agent made from silicon.  
    • NoriTori
      Celiac symptoms but negative endoscopy and antibody test + family history of gastro problems

      By NoriTori · Posted

      @Scott Adams  Sure, Any and all information is welcome. Also the only was to convince my family to get tested is to get tested myself and conclusive answers. Very stubborn lot.  
    • trents
      Blood results

      By trents · Posted

      Understood. It's very anxiety-provoking when you don't know what you are dealing with and don't know if you are attacking it correctly.
    • Heatherisle
      Blood results

      By Heatherisle · Posted

      I have heard of NCGS, but everything is just so confusing!!! Just unsure of things as her EMA test was negative but TTG was positive @19u/ml(lab range 0.0-7.0).Apparently she also has occasional bubble like blisters in between her fingers, don’t know if that’s significant. She is triallling gluten free as suggested by the gastroenterologist after her endoscopy. Keep getting different answers when typing in her symptoms etc. Some sites say it can be possible to have coeliac, even with a negative EMA . It’s so frustrating and her anxiety levels are through the roof. I know she’s hoping it’s coeliac which is weird I know!!! But if it’s not it just means more tests. Sorry to ramble on!!!
×
×
  • Create New...