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Anybody Have Children With Only Neuro Symptoms?

mamaloca2

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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

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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

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