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

Anybody Have Children With Only Neuro Symptoms?

mamaloca2

Recommended Posts

mamaloca2 Apprentice
mamaloca2
Posted

Hi everyone. I have many questions so please bear with me. My Nephew is almost 3 yrs old now and still cannot feed himself, walk, or talk. He seems to understand what goes on around him and understands things we say to him. He finds ways to communicate some of his needs, however, it seems that his body just is not able to do what he wants it to do. He sometimes cannot focus on things and has staring spells that are suspected to be optic seizures. They have been to all sorts of specialists and have had many tests, but no celiac tests. They have celiac disease in their family-his great aunt (this is my husbands side) and my kids are both gluten intolerant through enterolab They tried gluten free diet after I gave them info, but only for a couple weeks and weren't even strict about it. What were your kids symptoms? How do I convince his parents to get him tested when their doctors don't even know anything about it? And is celiac panel accurate? It was neg for my 2 year old, but she was positive enterolab. Enterolab does not seem to have much street cred though. How was yours diagnosed? Is there a celiac specialist we could send a tape to? What did you do? Sorry so lengthy, but any help would be appreciated.

Thank you

SJ

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

Celiac.com Sponsor (A8-M):


Arpita Apprentice
Arpita
Posted

Yes, my friend's son and many of her friend's children had those symptoms only. Some were even diagnosed with autism and made a complete turn around after going gluten and dairy free (casein free). There is a gluten and casein free website that I could direct them towards. Also, my child has primarily neurological symptoms -- seizures, mood swings, depression, hyperactivity -- all of which go away once gluten free (no seizures at all). Celiacs can also have only neurological symptoms. I don't have many suggestions regarding your other questions. The connection is so weird to most people that they think you are crazy mentioning it.

Nic Collaborator
Nic
Posted

Hi, my youngest son is not diagnosed with Celiac Disease and so far I haven't made him gluten free (his older brother is Celiac). My youngest tested negative for Celiac and does not carry the gene for it but has had neurological problems since infancy. He was severely gross motor delayed, had sensory issues (he licked everything he could for years and gagged on strong taste, mostly sweet stuff, or things with texture). He has hypotonia (poor muscle tone) which affected his speech and feeding. We went to every specialist known and no one ever found out what was wrong with him. They did recommend when he was about 10 months being evaluated by an Early Intervention Program provided by the state (we live in NJ but I know these programs are everywhere). By the time he was 14 months he was walking, before that his legs were useless and limp. The physical therapist said that sometimes with kids like this their muscles need to be "reminded" how to work properly. From Early Intervention he went into a handicapped pre k program offered by our district and while there has been tremendous improvement we still see some weakness in the trunk muscles and mouth. He starts Kindergarten on Wed. and will be mainstreamed with no classification. Ironically, when I had his genes tested through Enterolab I found that he carries the DQ1 gene which seems to be known for gluten intolerance with neurological symptoms. I was unaware of this until now and now have to consider the gluten-free diet for him too. Has your nephew received any services for his delays?

mamaloca2 Apprentice
mamaloca2
Posted
  • Author
Has your nephew received any services for his delays?

Yes, he has physical therapy sessions 3 times a week. I don't know what program it is. We live in California. Thank you for sharing your experience with me. I am desperate to find out if this is what is holding him back. It is a difficult disease, but if it we know that he had celiac, at least we could do something about it.

Much Appreciation,

Stacy

mamaloca2 Apprentice
mamaloca2
Posted
  • Author
Yes, my friend's son and many of her friend's children had those symptoms only. Some were even diagnosed with autism and made a complete turn around after going gluten and dairy free (casein free). There is a gluten and casein free website that I could direct them towards. Also, my child has primarily neurological symptoms -- seizures, mood swings, depression, hyperactivity -- all of which go away once gluten free (no seizures at all). Celiacs can also have only neurological symptoms. I don't have many suggestions regarding your other questions. The connection is so weird to most people that they think you are crazy mentioning it.

Thank you for your imput. I think I have seen a website like that. I will check it out again and give them the site.

Much Appreciation,

Stacy

Archived

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

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


  • Member Statistics

    • Total Members
      131,782
    • Most Online (within 30 mins)
      7,748
    BH1951
    Newest Member
    BH1951
    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

    • nanny marley
      Manitol and mri

      By nanny marley · Posted

      Hi I've been told I need a MRI on my bowels , I was booked for a colonoscopy, but because of my sever back issues and trapped nerve it can't be done , the nurse told me I will have to have a manitol drink a hour before the scan , I'm just a bit worried has I have issues with sweeteners like even a little,  I get a weird throat and ears and I've read it is a similar substance , not sure if anyone has had one of these scans or could give me some advise on the drink prep thanks in advance 😄
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Ok thank you.  Me either 
    • Colleen H
      Celiac attack confusion and anxiety

      By Colleen H · Posted

      Hi all ! Can a celiac attack be so intense that it causes your entire body to work in reverse? Meaning really bad pain,  neuropathy and muscle,  jaw pain,  the stomach issues , Horrible anxiety and confusion??  I had a Tums and you would think I ate poison. My jaw and stomach did not like it . Not the norm for me. Things that are simple are just out of control. Anyone ever have this happen??  I'm trying to figure out what I ate or did to bring on a celiac like attack. I had an idea before but yesterday I didn't have any gluten unless it was in a medication ?! Any positive suggestions ??  Thank you 
    • Scott Adams
      Gluten free stuff

      By Scott Adams · Posted

      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Gluten free stuff

      By trents · Posted

      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
×
×
  • 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.