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
gf4life
Posted

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
nettiebeads
Posted

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

Lisa Mentor
Lisa
Posted

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

2kids4me Contributor
2kids4me
Posted

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

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

tiffjake Enthusiast
tiffjake
Posted
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
taz sharratt
Posted
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
plantime
Posted

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
gf4life
Posted
  • Author

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.

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


  • Member Statistics

    • Total Members
      131,856
    • Most Online (within 30 mins)
      7,748
    Sonya Haskin
    Newest Member
    Sonya Haskin
    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

    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
×
×
  • 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.