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

Williams Syndrome


come dance with me

Recommended Posts

come dance with me Enthusiast

My daughter has just had a blood test to see if she has this.  Anyone else been down this path before?


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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

I have no personal experience with William's Syndrome.  I am on a search for answers for my daughter's issues.  (kind of a "research junkie" way of dealing with things)  She has been diagnosed with Celiac since she was 16 months old, Eosinophilic Esophagitis when she was 6, vitamin D defiency &precocious puberty at 10 (now), and I'm not sure if doctors are just missing something.

 

In the experience that I have gained from dealing with "surprise" your child has this (?) lifelong disease, I have learned it is better to have the truth.  Get the diagnoses so you can help your child live her life to the fullest.  The average descrption of a William's Syndrome person, sounds like a delightful person to be with!!!!  (My personal opinion ~ not everyone needs to have the IQ of Einstein to learn the true lessons of life.  It really is love.)  You will have different challenges to face, but you will do the best you can through it.  (I read your other post and you are a survivor and strong willed.  If anyone can handle the challenges of being a mother you can!)

 

((HUGS))

come dance with me Enthusiast

She was diagnosed with a learning disability, she has a heart condition, Autism, bladder problems, pretty much most of what's on that list for WS but it's all been getting treated individually.  It might be that she doesn't have it, and the symptoms are unrelated.  Either way, the treatment and help she's getting won't change, it will just make it easier to write one thing on the school enrollment form than a list of everything.  Thanks.  We all do what we need to do to get by, and as mothers we have to keep going :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,897
    • Most Online (within 30 mins)
      7,748

    ItchyPap
    Newest Member
    ItchyPap
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      The last time my vitamin D was very low, according to a lab test, was before I was diagnosed with celiac disease. I've been supplementing ever since, and now the numbers on the lab tests are within their normal ranges, oftentimes way above. I've also been supplementing with methylcobalamin (B12) since I was low before diagnosis in 2010, and now I'm fine. I'm surprised I ever requested a folate level, but I did, in 2019. Result 9.4 ng/mL (range >3.0).    
    • Captain173
      Do you have any links that show studies where NCGS and/or infections have caused high Ttg iga levels.  I've yet to see anything that truly supports this. Everything I've read says the high levels are celiac specific.
    • gailc
      I get coughing and choking from canola oil. I cough up stuff.  Symptom is like bronchitis.  I have gluten intolerance, maybe celiac.  the choking persists for about a week, it simulates a cold.  I got it from the gluten free menu at Outback too, that time I got cramps for 25 hours. the cramps start about 20 minutes after finishing eating.  
    • Wheatwacked
      Many of the symptoms, there are over 200, associated with celiac disease and NCGS are vitamin and mineral deficiencies caused by small intestine damage in the case of celiac disease and food avoidance and the poor nutrittion of the Modern American Diet (MAD) I used to turn the heat on even at 78 degrees.  The 600 mcg of Liquid Iodine helped.  Also good for hair, nails, skin and brain fog.  Another good thing for brain fog is phosphatyl choline.  It is essentil for acetylcholine- a brain chemical. I have familial hyperlipdemia and instead of a statin I got a prescription for Nicotinic Acid, 2000 mg a day.  I was already taking 500 mg a day and was really surprised when my HDL when up to  44 and I began sleeping better and my legs and back are getting more flexible.  In addition after the first few doses of itchiness I get a warm fuzzy feeling Raising your vitamin D is crucial.  Low vitamin D allows the immune system to run amuck. intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe).  Look at Thiamin deficiency. consistently ran hot, was always cranking the a/c, to someone who wears a down vest.  Any combination of deficiencies in B1, B2, B3, B5, choline and Iodine can cause this.  Likely all of them. After a lifetime of mouthbreathing GFD cleared my sinuses.  Post nasal drip is my first symptom of cross contamination nowaday.  
    • Wheatwacked
      If you mean continueing on Gluten Free my answer is yes.  She showed significant improvement in her behavior and that translates to a happy family.  Do get her tested as sooon as you can.  You might want to investigate genetic testing for Celiac Disease.  Children recover more quickly than adults.  It took my son about 6 months on Nutramigen before going to regular food, gluten free.  Blood tests are not always accurate in very young children. You may be advised to see a gastroenterologist instead of relying on blood tests results. Logic: She is better off gluten than before.  Wheat flour has no nutritional value and has an omega 6: omega 3 ratio of 22:1.  Our bodies do better at 3:1.  Omega 6 causes inflammation. When my son was diagnosed, back in 1976, his doctor recommended my wife and I also go gluten free.  We declined and lived to regret it.  I started GFD at 63 and have spent the last 10 years undoing the damage, some of my symptons went all the way back to my childhood and things I lived with all my life got better.
×
×
  • Create New...