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

  • 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. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    5. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
×
×
  • 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.