tag:blogger.com,1999:blog-2396932471739700718.post2055380822246205389..comments2023-10-31T07:12:20.494-04:00Comments on Our Gluten Free Family: Benign Congenital Hypotonia (Low Muscle Tone) and the Gluten Free DietAnonymoushttp://www.blogger.com/profile/10857016042823179562noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-2396932471739700718.post-42983178205983629452014-11-15T12:37:17.828-05:002014-11-15T12:37:17.828-05:00I am in disbelief right now because most of the po...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. Anonymoushttps://www.blogger.com/profile/16286663245085524418noreply@blogger.comtag:blogger.com,1999:blog-2396932471739700718.post-60916516157523356922014-11-15T12:14:55.353-05:002014-11-15T12:14:55.353-05:00My daughter is nine and diagnosed as Hypotonic at ...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. Anonymoushttps://www.blogger.com/profile/16286663245085524418noreply@blogger.comtag:blogger.com,1999:blog-2396932471739700718.post-19584534441099895682014-07-24T22:39:45.041-04:002014-07-24T22:39:45.041-04:00Anna,
I am so sorry a gluten free diet contributed...Anna,<br />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)Anonymoushttps://www.blogger.com/profile/10857016042823179562noreply@blogger.comtag:blogger.com,1999:blog-2396932471739700718.post-39439624697670972142012-08-03T14:34:05.395-04:002012-08-03T14:34:05.395-04:00Anna this is irresponsible of you to post this. Th...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2396932471739700718.post-76391206279231622852012-02-29T13:27:51.426-05:002012-02-29T13:27:51.426-05:00email me sometime. the link is on the right near t...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.Anonymoushttps://www.blogger.com/profile/10857016042823179562noreply@blogger.comtag:blogger.com,1999:blog-2396932471739700718.post-21656419112737201202012-02-29T13:24:47.583-05:002012-02-29T13:24:47.583-05:00My daughter has the same diagnosis. I actually cri...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..Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2396932471739700718.post-24026457543875319702011-03-14T20:32:10.053-04:002011-03-14T20:32:10.053-04:00Do NOT ever do a gluten free diet, it taught my da...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 thisUnknownhttps://www.blogger.com/profile/09300723885560485904noreply@blogger.comtag:blogger.com,1999:blog-2396932471739700718.post-50270644142553133062010-03-03T02:24:29.019-05:002010-03-03T02:24:29.019-05:00My daughter, now 23 months has been diagnosed &quo...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.<br /><br />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?<br /><br />Please suggest.<br /><br />Thanks a lot.Unknownhttps://www.blogger.com/profile/18251971213971090038noreply@blogger.comtag:blogger.com,1999:blog-2396932471739700718.post-74978489573365029012009-09-06T06:28:23.622-04:002009-09-06T06:28:23.622-04:00Our son is 18 months and was diagnosed with Hypoto...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!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2396932471739700718.post-32607710503730832382009-06-16T11:58:33.829-04:002009-06-16T11:58:33.829-04:00Hi and thank you for writing your post about Low M...Hi and thank you for writing your post about Low Muscle Tone. Our daughter too has grown up with low muscle tone and was diagnosed with something called Ehlers Danlos Syndrom. Just before turning five, we read what you wrote here about Gluten allergies and thought that you were writting about our daughter. Now 3 months later, she has been diagnosed with Coeliac disease, something that her doctors chuckled about when we said we wanted to test for it. We have started with a Gluten free diet now and hopefully she will be running and jumping like her 5 year old friends soon. Thanks again your your post. It pointed us in an entirely new direction that none of my daughter's doctors could foresee. MoJAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2396932471739700718.post-62963003626594767132009-06-09T11:43:44.858-04:002009-06-09T11:43:44.858-04:00My daughter, now 2 1/2 has Hypotonia, with no othe...My daughter, now 2 1/2 has Hypotonia, with no other symptoms. We had searched with blood work, but they have been negative.<br />She walked at 19 months but is still quite clumsy and doesn't regularly sit up straight unless i remind her. She quickly gets tired as well. I knew there had to be a diet that would help. I ask the geneticist and she said no. I am going to try it and she what happens. Wish me luck because she LOVES to eat and is very strong willed.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2396932471739700718.post-78521583269193662922009-03-27T13:33:00.000-04:002009-03-27T13:33:00.000-04:00I read the article. Right on the money. I'll get ...I read the article. Right on the money. I'll get started. Thank you.Territory Momhttps://www.blogger.com/profile/04484634821984857878noreply@blogger.comtag:blogger.com,1999:blog-2396932471739700718.post-86269382450441598172009-03-26T20:24:00.000-04:002009-03-26T20:24:00.000-04:00Here is the journal article that made me realize t...Here is the journal article that made me realize that my daughter had celiac:<BR/><BR/><A HREF="http://pediatrics.aappublications.org/cgi/content/full/113/6/1672" REL="nofollow">Range of Neurologic Disorders in Patients With Celiac Disease </A>Anonymoushttps://www.blogger.com/profile/10857016042823179562noreply@blogger.comtag:blogger.com,1999:blog-2396932471739700718.post-88910994889518547372009-03-26T18:58:00.000-04:002009-03-26T18:58:00.000-04:00Okay, this is us. My son has the same diagnosis wi...Okay, this is us. My son has the same diagnosis with a little hyper activity. He is in an autistic special ed. class, but I know he will come out of this. I've asked doctors about the GF diet and they say if he hasn't been diagnosed with celiac disease then its not necessary. I guess I should start with getting "Evidence of Harm". I need some advice. ThanksTerritory Momhttps://www.blogger.com/profile/04484634821984857878noreply@blogger.com