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

My Daughter Said Something Really Neat Today!


gf4life

Recommended Posts

gf4life Enthusiast

Today my 7yo daughter and I were talking about her new friend. Her friend has Cerebral Palsy and she uses a walker to help her get around. They are in a stretching class together at our local dance studio and my daughter says that her friend enjoys the class, but she falls down a lot. I explained to her that her friend has a disease that causes her muscles not to work too well. (That is about as detailed as I wanted to get into it with her without doing more research to explain it better...)

So she asked me, "Will she get better or will she always be like that". I told her that she will always have the disease, but there are doctors and scientists looking for ways to cure it. Then I said, it is sort of how you will never be able to eat gluten, unless they come up with a way of your body being able to tolerate it. So here is the kicker! She says to me, "I wouldn't want to eat gluten even if I could. The gluten free food tastes so much better!" And I swear she was serious! :D

She doesn't mind being different. We went to a party today for the summer reading club at our local library. My daughter was happy when they brought out the snacks. They had ice creams bars and cookies. She got to have 2 ice cream bars since she couldn't eat the cookies. It wasn't as if she were suffering or anything! ;) And at vacation bible school last week all the kids were jealous of my kids because mine got a full sized homemade gluten-free cupcake and the rest of the kids got a store bought mini cupcake.


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



Celiac.com Sponsor (A8-M):



nettiebeads Apprentice

Sounds like you're doing a fine job, mom!!!

Lisa Mentor

ditto, what a wonderful joy you must be doing. :)

2kids4me Contributor

and another "good job" to you.

You may want to rephrase the definition when she is older perhaps. Cerebral palsy is not a disease but it is brain damage to the motor area of the brain. People with Cerebral palsy often have normal intelligence but speech is altered (in severe damage, they are non verbal). The muscles are fine - they just dont get the right messages for co-ordinated movement.

It most often occurs at birth (hypoxia, umbilical cord being entrapped by the baby's shoulder, or wrapped around baby's neck). It can also occurs if the baby requires surgery in the neonatal period and 02 is compromised during the procerdure - heart surgery, closing a defect from spina bifida etc.. The motor area is the first one damaged when oxygen supply is compromised (this was how the neuro guy explained to my friend)

With young children, the way my friend explains it to kids (her son has CP) is:

His brain cant send alot of messages to his muscles so they kinda do whatever they want. But his eyes work great and so does his sense of humour and he loves to visit with other kids and hear about you (he is non verbal).

Lisa Mentor
ditto, what a wonderful joy you must be doing. :)

I meant "job", but "joy" can work as well. :)

tiffjake Enthusiast
Today my 7yo daughter and I were talking about her new friend. Her friend has Cerebral Palsy and she uses a walker to help her get around. They are in a stretching class together at our local dance studio and my daughter says that her friend enjoys the class, but she falls down a lot. I explained to her that her friend has a disease that causes her muscles not to work too well. (That is about as detailed as I wanted to get into it with her without doing more research to explain it better...)

So she asked me, "Will she get better or will she always be like that". I told her that she will always have the disease, but there are doctors and scientists looking for ways to cure it. Then I said, it is sort of how you will never be able to eat gluten, unless they come up with a way of your body being able to tolerate it. So here is the kicker! She says to me, "I wouldn't want to eat gluten even if I could. The gluten free food tastes so much better!" And I swear she was serious! :D

She doesn't mind being different. We went to a party today for the summer reading club at our local library. My daughter was happy when they brought out the snacks. They had ice creams bars and cookies. She got to have 2 ice cream bars since she couldn't eat the cookies. It wasn't as if she were suffering or anything! ;) And at vacation bible school last week all the kids were jealous of my kids because mine got a full sized homemade gluten-free cupcake and the rest of the kids got a store bought mini cupcake.

That is so cool! I think kids are so open to things, and adults put limits on them that they don't see or feel so they get confused. But I don't have kids, LOL, so this is just my opinion based on babysitting and my friends' kids. Looks like you aren't teaching your daughter that gluten-free food is bad, and that is cool!

taz sharratt Enthusiast
Today my 7yo daughter and I were talking about her new friend. Her friend has Cerebral Palsy and she uses a walker to help her get around. They are in a stretching class together at our local dance studio and my daughter says that her friend enjoys the class, but she falls down a lot. I explained to her that her friend has a disease that causes her muscles not to work too well. (That is about as detailed as I wanted to get into it with her without doing more research to explain it better...)

So she asked me, "Will she get better or will she always be like that". I told her that she will always have the disease, but there are doctors and scientists looking for ways to cure it. Then I said, it is sort of how you will never be able to eat gluten, unless they come up with a way of your body being able to tolerate it. So here is the kicker! She says to me, "I wouldn't want to eat gluten even if I could. The gluten free food tastes so much better!" And I swear she was serious! :D

She doesn't mind being different. We went to a party today for the summer reading club at our local library. My daughter was happy when they brought out the snacks. They had ice creams bars and cookies. She got to have 2 ice cream bars since she couldn't eat the cookies. It wasn't as if she were suffering or anything! ;) And at vacation bible school last week all the kids were jealous of my kids because mine got a full sized homemade gluten-free cupcake and the rest of the kids got a store bought mini cupcake.

you should be really proud of your daughter sounds like she has a good head on her shoulders.


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



Celiac.com Sponsor (A8-M):



plantime Contributor

This is why I always told my kids things. I was told not to tell them when things were bad or someone was sick, it would put too much stress on the kids. I think that it eased their stress, simply because they knew what was going on. Your child showed just how much a child can comprehend and relate to things that are not good, and therefore be accepting. You should be proud of your daughter! Thank you for sharing it with us!

gf4life Enthusiast

Thanks everyone. I am really proud of her. :D She is very wise for her age!

You may want to rephrase the definition when she is older perhaps. Cerebral palsy is not a disease but it is brain damage to the motor area of the brain. People with Cerebral palsy often have normal intelligence but speech is altered (in severe damage, they are non verbal). The muscles are fine - they just dont get the right messages for co-ordinated movement.

It most often occurs at birth (hypoxia, umbilical cord being entrapped by the baby's shoulder, or wrapped around baby's neck). It can also occurs if the baby requires surgery in the neonatal period and 02 is compromised during the procerdure - heart surgery, closing a defect from spina bifida etc.. The motor area is the first one damaged when oxygen supply is compromised (this was how the neuro guy explained to my friend)

I do plan to explain this more as she gets older. Thank you for the explanation. The amazing thing about this little girl with CP is that she lived for the first year of her life in an orphanage in Kazackstan, and she pretty much just stayed in her crib all day with no stimulation or interaction with others. Her adoptive parents were told that she would never walk or talk (in any language), but she is doing both! She can walk unassisted for short distances, but mostly uses a walker, and she can speak english as well as any other 6 year old. Her parents are amazing, too. They are in the process of adopting another child, possibly from the same area.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,742
    • Most Online (within 30 mins)
      7,748

    MistyMoon
    Newest Member
    MistyMoon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.