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

Testing Younger Sibs

StephanieL

Recommended Posts

StephanieL Enthusiast
StephanieL
Posted

So what are your thoughts all?

My DS is 5.5 and has food allergies and Celiac. Because of safety (crumbs plus his anaphylactic reaction possibility) his 3.5 yo sister is on the same diet here at home. My 9 month old will be gluten-free till at least a year but most likely longer for the same reasons my daughter is. She started preschool last spring and her teachers has all the same allergies and gluten issues, she was also DS's teacher so she knows our drill so it's not a really big deal now. I am wondering if/when would you consider a gluten challenge? Would you even? Should we do the genetics? I am guessing they'll be + since gee, the kids are genetically linked so wouldn't the chances be pretty high? I am just thinking out loud here.

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

My kids are in the process of testing now because I have celiac. Two of my boys have symptoms that could be celiac but I'm unsure if that's it. They are 9,7 and 5. I am switching everyone over to gluten-free this summer because like you, I think it's better safe than sorry... and it's easier. :P

While they live with me, they'll have to be gluten-free even if they test negative. As teens, if they start to stray from the diet to eat the junk that teens like, then I will push them to be tested after 6 months to a year. (I've heard that after being gluten-free for years you need to consume gluten a long time before any tests will be positive.) They are all so young now, that I have a few years to drill the seriousness of the disease and the need for testing, into their heads... hopefully it will stick. ;)

So I guess, no. I won't put them on a gluten challenge if they test negative, but if they do it them selves when they are older, I'll support their decision... but I won't serve gluten in the house.

StephanieL Enthusiast
StephanieL
Posted
  • Author

I guess I am wondering too if I should get he baby tested as he may be getting some gluten via breastmilk. I am thinking maybe before kindergarten for DD as I am not going to be able to get a 504 for her unless we have a dx.

I wish ere were an accurate way to test without having to be on gluten :P

nvsmom Community Regular
nvsmom
Posted

I think it's hard to get an accurate test for babies and toddlers... This is tricky when they are so small...

Have you been tested for celiac? I just ask because I read an article, can't remember where now - darn, and it discused how undiagnosed celiac mothers could possibly pass on celiac (triggers) to their kids because the antibodies could be in the milk... I'm not sure of the validity or reliability of the paper but it's something to consider. I know it sure disturbed me. :(

Best of luck with your decision. I hope it goes smoothly for you all either way. :)

StephanieL Enthusiast
StephanieL
Posted
  • Author

I have been tested (celiac panel but not genetics) and I was negative. DH refuses to get tested <_<

Like I said I just wish there were an easier way.

nvsmom Community Regular
nvsmom
Posted

((HUGS))

Archived

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

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


  • Member Statistics

    • Total Members
      130,534
    • Most Online (within 30 mins)
      7,748
    Barbx4
    Newest Member
    Barbx4
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • 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

    • Fabrizio
      Kan-101

      By Fabrizio · Posted

      Thanks for your article. 
    • NCalvo822
      Newly Diagnosed

      By NCalvo822 · Posted

      Thank you.  Very helpful.
    • knitty kitty
      Newly Diagnosed

      By knitty kitty · Posted

      Migraines can be caused by Thiamine deficiency.  Thiamine is a B vitamin that becomes depleted quickly because it can't be stored long.  All the  B vitamins work together to make energy, ATP, which is used to fuel all the cell activity.  Without Thiamine, the energy production cycle doesn't even get started.   There's studies done on mice showing thiamine deficiency affects the offspring of thiamine deficient mothers and fathers.  The offspring have fewer thiamine receptors and are prone to becoming thiamine insufficient quickly.  They have a higher metabolic need for thiamine.  Supplementing with extra thiamine helped them  tremendously. Migraines have run in my family for several generations, too.  Once I started taking TTFD, a form of thiamine that can enter cells without using thiamine transporters, my migraines have vanished.  TTFD is tetrahydrofurfuryl disulfide. Benfotiamine is another form that can improve migraine frequency, too. Thiamine is safe and nontoxic even in high doses.  There is no upper limit because thiamine has never caused a death even in high doses.  It is excreted via kidneys if not needed or not absorbed.
    • knitty kitty
      Lymphocytic Colitis with Celiac

      By knitty kitty · Posted

      Thank you, @Oldturdle, I greatly appreciate that.  I've always been a curious kitty.  I wanted to figure out why I didn't feel well because I knew it wasn't all in my head like they told me.  It pleases me to be able to help others in the same boat. Yes, alcohol prevents the absorption of thiamine and stops thiamine from working properly.  This can lead to Wernicke's Encephalopathy and Korsakoff syndrome, where thiamine deficiency severely affects brain function.  Doctors are trained to look for the triad of symptoms: opthalmoplegia (nystagmus), ataxia, and altered mental state.  However, not all people present with all three symptoms.  Many (80%) don't get diagnosed until their autopsy.   Alcohol has to be processed through the liver.  If there's insufficient thiamine, Alcoholic Fatty Liver develops.  In thiamine insufficiency, calories are turned into fat and stored in the liver instead of being turned into fuel ATP for the body.  Alcohol also prevents absorption of calories from food and other nutrients.   Non-alcoholic Fatty Liver can develop in nonalcoholics, storing excess calories as fat in the liver.  However, excess calories can also be turned into fat and stored in the abdomen, hence the increase in obesity.   In Celiac disease, we don't absorb sufficient nutrients like thiamine from our food.  If we eat a diet high in carbohydrates, we can run out of vitamins like thiamine and the other Bs needed to turn those calories into fuel ATP.  For every extra thousand calories of carbohydrates consumed, our bodies require 500 to 1000 mg of additional thiamine to process them into fuel, ATP,  the "bitcoin" of energy in our bodies.   Wernicke's encephalopathy can occur in non-alcoholic people, but doctors can miss the symptoms because the patient doesn't drink, and doesn't have all three symptoms of the classic Triad of symptoms seen in Wernicke-Korsakoff syndrome.  My doctors failed to diagnose me with thiamine deficiency, Wernicke's Encephalopathy,  because I didn't drink alcohol, although I had ataxia and an altered mental state.   Doctors don't think outside the box!   I went home and took thiamine.  I had improvement in my symptoms within an hour.  High doses of thiamine are required to correct Thiamine deficiency.  Thank God I had studied nutrition, microbiology, and the research of Dr. Derrick Lonsdale and Dr. Chandler Marrs.  ("Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition" is Drs. Lonsdale and Marrs' book.).  And I've kept learning and sharing that knowledge to help others.   It's wonderful you've been supplementing with vitamins so long!  Don't worry about the bright yellow urine.  That's excess Riboflavin B 2.  Interesting note, Riboflavin glows under black light!  Those lights used to detect where pets have soiled outside of the box, that's the Riboflavin in urine glowing.  Riboflavin can be put in sugar syrup when making rock candy and it will glow under black light.  Fun for Halloween. I hope you feel better, @Oldturdle.  If I can be of further help anytime, you can send a personal message here.  Thanks for reading my posts.  P.S. Thiamine deficiency and Wernicke's Encephalopathy are completely reversible if treated promptly with high dose Thiamine.
    • DebJ14
      Newly Diagnosed

      By DebJ14 · Posted

      Migraines ran in my family, on my father's side.  All of my female first cousins on that side, and our grandmother suffered from Migraines.  Grandmother died in 1984 so we do not know if she ever would have been diagnosed with celiac disease. However, all 4 of us cousins were diagnosed with celiac disease between 2003 and 2007.  The dermatitis herpetiformis rash is a blistery, super itchy rash.  When they do the biopsy they take it from non-involved skin that is next to the rash.  If done wrong, the results may not be accurate.  Have you ever had one done? In that case, I agree that maybe she has you still on gluten for a biopsy.  But, if she has not ordered it nor referred you to a gastroenterologist, then I would question her advice.  
×
×
  • Create New...