Comments on: Benign Congenital Hypotonia (Low Muscle Tone) and the Gluten Free Diet

By: Tressa Kenna

Tressa Kenna — Sat, 15 Nov 2014 17:37:17 +0000

I am in disbelief right now because most of the posts sre describing my daughter now nine. She never held her own bottle to drink. Had major tremors especially in the morning due to anything anti-gravity. Wa continually falling. Also had miraine variants. Neurologist said it was genetic but wanted to do a muscle biopsy but wanted to save that as a last resort. It wasnt until after the ago of sux that she could button a shirt. Just iver the last two years…shes now nine…shes been able to likft a gallon of milk. She cant pour a glass if the gallon is full but she can carry the gallon.

By: Tressa Kenna

Tressa Kenna — Sat, 15 Nov 2014 17:14:55 +0000

My daughter is nine and diagnosed as Hypotonic at about age three. This affects our daily lives. I've been reading about gluten. Out of curiosity I did a search for "gluten and Hypotonia". This has blown my mind. I don't know anyone else that deals with this. My daughter can't play outside running or riding her bike for long because she gets leg cramps at night.

By: Hayyah

Hayyah — Mon, 03 Nov 2014 01:50:52 +0000

About learning disabilities, they could actually be vision problems that are common in hypotonic children, such as tracking issues, binocular vision, strabismus, etc. I recommend going for an evaluation with an optometrist /at a vision therapy center/. Not just a regular optometrist. And this stuff doesn't show on an eye chart exam. I am an English teacher with a gifted 5 yo son whom I thought was perhaps double gifted, meanin with a disability. We started with an OT for visual integration and bilateral coordination issues and that's where I finally was told he's hypotonic. His doc never told us. So then I took him for a very comprehensive eval at a vision therapy center. We never suspected bad eyesight because he never complained, he passed the eye chart, and he reads 5th grade chapter books. But he can't write a letter or catch a ball. We found out he has terrible eyesight. His eye muscles are not working together. This is a medical condition that eyeglasses can't fix. Hence, insurance should cover the 9 months of therapy and possible surgery. But anyway, these problems, when undetected, are often passed off as learning disabilities. Your daughter could have dyslexia, or she could have weak and uncoordinated eye muscles causing her to see the print in a distorted way. These vision problems can also cause ADD or ADHD like behavior, school problems, and a very slow working speed. They more commonly affect reading and/or comprehension level, but somehow for our son it's just the writing, precision, and speed affecting him.

By: gfcfmom

gfcfmom — Fri, 25 Jul 2014 02:39:45 +0000

Anna,
I am so sorry a gluten free diet contributed to your daughter's eating disorder–but I imagine that there were many other contributing factors. Also, a lot of people with celiac/gluten intolerance have eating issues because they don't feel well when they eat. I hope your daughter is doing better. And I would suggest that whatever diet she is on–that you make sure that she has optimal levels of vitamins. Low zinc can cause anorexia type of symptoms and loss of appetite. Since wheat and fortified foods are a source of zinc, it is possible that removing these foods caused zinc levels to go even lower. So, I would recommend if someone on a gluten free diet has any type of eating issues that they be checked for vitamin and mineral deficiencies (B12, zinc, copper, vitamin D)

By: Anonymous

Anonymous — Fri, 03 Aug 2012 18:34:05 +0000

Anna this is irresponsible of you to post this. These people are allergic to gluten, and diagnosed as celiac.It acts like an autoimmune disorder. I highly doubt that a "diet" caused anorexia. Anorexia is a mental disorder.

By: gfcfmom

gfcfmom — Wed, 29 Feb 2012 18:27:51 +0000

email me sometime. the link is on the right near the top. no we don't have any learning disabilities that we know of–but I know people and have told parents to do research and investigate fish oil and their kids have REALLY gotten better from LDs by increasing healthy fats. You might want to listen to the videos of kelly dorfman in my VIDEO section about the importance of fat for the brain.

By: Anonymous

Anonymous — Wed, 29 Feb 2012 18:24:47 +0000

My daughter has the same diagnosis. I actually cried when I read your post. I have non-celiac gluten intolerance. I did not relate her condition to mine. Now I can do that. Does your daughter also have any learning disabilities? Mine seems to have dislexia..

By: anna

anna — Tue, 15 Mar 2011 00:32:10 +0000

Do NOT ever do a gluten free diet, it taught my daughter how to diet and then caused anorexia which caused inpatient and long term residential do NOT do this

By: varsha

varsha — Wed, 03 Mar 2010 07:24:29 +0000

My daughter, now 23 months has been diagnosed "Benign Congenital Hypotonia", with no other symptoms. The problem she is having is with anti gravity activities. She can walk well but she cannot sit up from lying position and cannot stand up from sitting position. She needs our support to do these activates. She even cannot climb by her own.

Neurologist has suggested her to give for 3 months PT. Do we need to do any other tests or do we require to give her Gluten Free diet?

Please suggest.

Thanks a lot.

By: Anonymous

Anonymous — Sun, 06 Sep 2009 10:28:23 +0000

Our son is 18 months and was diagnosed with Hypotonia at 4 months old. He is sitting, crawling, & standing, but not yet walking. They've haven't yet been able to find a reason behind his condition, and I've often wondered about dietary factors. HE often will cry after eating and is very fussy. He's absolutely fine in all other areas, and even his fine motor/speech is perfect. I'm going to explore this more so thanks so much for this post!!