[sleepingbean]

Bean is not a good athlete. She has had low muscle tone (always) and she has trouble with things like pencil grip, athletics, she is pigeon toed etc. She is causing trouble in PE on a regular basis because she just can't/won't cooperate and participate. It seems very unlike her because she WANTs to do sports and such and I wonder if ther low muscle tone (which I attribute to her gluten issues and rough start) have effect on that? Is it unrelated?
Any ideas?
Sometimes i feel like I am grabbing at straws trying to guess, but I really don't know how to help her "fit in" to situations sometimes. She called me from the nurse today because she had an accident at school today. Any ideas are welcome!

[KimS]

Ds's joints get very stiff when he's been glutened. Once, I heard his dance instructor chastise him for not trying hard enough because his splits were not as well done as the week before. I made a point of explaining to her that he had been glutened and please do not try to manipulate his joints when they're stiff because it hurts him. She's good about it and doesn't try to anymore but it needed about a 10 minute explanation for her because she kept insisting that she was just turning his foot, not trying to make him split farther. I had to just keep saying the same thing over and over, "He can't tolerate being manipulated for about 2 weeks after glutening, no matter how gently you're being. There's no explanation, it's just the way it is. He'll stretch it out on his own as his joints loosen."

I had to say it at least 3 times to her, and she's really a very nice person. It's hard for people to understand how profound the effect is. I know that I even still shake my head at how profoundly our whole family is affected by gluten. (Ear wax? No way!! All headaches are related to FOOD? No way!)

He's actually an excellent dancer because he's extremely strong and wiry... but if he's glutened he cannot achieve the same positions because everything stiffens right up on him. I know that's kind of opposite to what you're dealing with but I think it's kind of the same scenario as the whole diarrhea/constipation thing. I think the teacher may be requiring her to do things she feels 'uncomfortable' doing... whatever the reason.

That's my best guess, anyway. :icon_wink:

[Simon]

Have you ever considered taking Glutenzyme as a protective measure? It is available from the internet and comes from UK. It is mentioned on this article http://www.foodreactions.org/gluten/index.html and according to its forum many have found it helpful.

Hope it helps.

[RathyKay]

It's been awhile since I've posted on something I don't know anything about, but I thought I'd write what popped in my head and let you take it (and investigate further) or leave it.

So, Tom was on Depakene for awhile (he has epilepsy) and we were told by our neuro that it depletes zinc. Our DAN! doctor told us that it also depletes carnitine in addition to zinc, which can lead to low muscle tone and tiredness. I have no idea what else can cause low muscle tone, or if carnitine supplementation will "solve" your problems, but it did pop in my head.

Has Bean been evaluated for OT? Or does she not qualify? Our OT has us doing some things which strike me as more PT-type, but also help with the OT. I was doing "wheel-barrows" with Tom on a regular basis (need to start up again) up and down the hall once a day - arm strengthening. She also likes him to climb on the playground (ladders) - hand strengthening. Hanging from bars. And, we throw and catch balls (Tom is lousy at that.) Maybe find out what they're working on in PE and practice at home where she can "fail" in private? Plus, maybe you can go a little easier on her so that she has more successes than she might get in class. (Tom is getting better at catching, because *I'm* getting better at throwing the ball in the right place. But, he's excited because he *is* catching it, even if I'm doing most of the work.)

I guess that's it for my ramblings today...

[orthomolecular]

I agree that carnitine might be considered in some cases.

I have a severe b6 deficiency which is known to cause muscle weakness problems. I also know that people with food allergies can benefit from b6 so far as their allergic reactions are concerned.

I did have low potassium levels as a result of my other deficiencies. Low potassium is not that common but can be consistent with mucsle weakness too. Of course the low potassium would also require sufficient b6.

I don't think you are grabbing at straws. I think sometimes you do have to look at every little thing to figure out what is the underlying cause of the overall health problems sometimes.

I never realized how I was prone to fatigue until I developed a severe case of fatigue. I can look back now and realize I had a number of problems that can be explained by my nutritional deficiencies.

Your child could have less muscle strength (especially upper body) because of some health problem or because of nutritional deficiencies. I think this could also impact on your child's posture, and possibly other things, like ability to play sports or coordination. Of course, not all of these may be related to just one thing, one specific nutritional deficiency, it might be more than one thing causing these different problems.

I have problems with my grip strength that I never experienced before I started supplementing. When you start to treat your deficiencies that is when you can see more of the signs of what the deficiencies can cause because your body is always burning through the nutrients which can cause the symptoms to appear with greater frequency.

[jetbrujah]

My daughter Grace was diagnosed with low tone at 18 months of age with speech delay ,poor motor skills (falling a lot) and social difficulty. Grace gets Physical,special Ed, Occupational and speech therapy and wears orthopedic shoes. Grace Is now almost 4 years old and we decided to try a gluten free diet to help her since she has so many delays.We are starting off changing her cereal and snacks and going from there. We were told no peanut products since it effects her ears. Grace is a Picky eater when it comes to chicken nuggets and gluten free food. If there are any parents going through this please let us know how the diet is working for your child. I will update this log once we fully change over to a gluten free diet

Kabe & Grace

[KimS]

My son had almost the opposite problem.

His muscles were so tight that he could hardly move. I think he also had a buildup of lactic acid in his muscles because it was very difficult for him to walk very far.

One thing I've learned is that, sometimes, opposite reactions are due to the same cause. Like too much of a vitamin can look the same as too little.

Celiacs can be people with either constipation or diarrhea. The same diet fixes both things. Figuring out the best diet for your child is the best place to start - in my Mom to Mom opinion.

Food sensitivities were the answer for my son. We began with a total elimination diet just before he turned 3.

NOTE: removing one food would not have helped him enough for us to have seen a difference. He would have still seemed 'sick'.

We had to remove ALL grain, nightshades and lilies from his diet as well as refined sugar. Eventually we removed dairy as well and noticed further improvement.

After about a year we started to add some of the troublesome foods back in.

The only things he cannot tolerate at all is gluten. He still limits other grains and sugar. Dairy is brought in for birthdays and Christmas in the form of cheese for pizza but the rest of the year we don't consume it in our house. (Other than the odd chocolate bar that is 'won'.)

Doing all this with him made me realize that *I* do better on this way of eating too and am moving better now (43) than I did in my 20s. My joint issues (knees, lower back) are definitely related to dairy consumption.

The only milk we drink is almond milk. No animal milk.

We don't consume whole grains either. Whole grains tend to knot up our shoulders.

We've been doing this for 7 years now. Happily, his range of motion is better than ever. He does martial arts and slowly, very slowly, his kicks are getting higher and higher. And now he can run like the wind and it's wonderful to watch him run because he always has a HUGE smile on his face.

Last fall, we took to doing multiplication drills and then after each drill, I would chase him around a specific running course (about half a city block long). Five times tables meant five running drills. He outruns me, usually, for the last two. - To think that he couldn't even walk 1/2 a block and now outruns me on it, is thrilling.

Our deal is that if he escapes me for 3 out of five runs, he wins a choc. bar. (gf of course - in Canada, it's usually and Oh Henry or a Reese peanut butter cup - I'm currently working on making a homemade, dairy free choc. bar though because I'd like to get that last bit of dairy out of our regular, every day kind of lifestyle.)

So, definitely worth trying but make sure you do it 'right' or 'fully' - or you might miss the boat that you were supposed to get on. Removing one food at a time... if the child is sensitive to 10 foods, at the end of a year you'll be so sick of 'altering' your food that you will eventually throw your hands up and say 'forget it'. I've seen it happen many times. Plus, even if you do have the wherewithall to stick with it, you're prolonging your eventual goal to healing.

I suggest reading "Breaking The Vicious Cycle" by Elaine Gottschall. It's a great book and the theory behind that diet has done some amazing things for challenged kids all around the world. Our initial diet was an altered version of that one. pecanbread.com is the website if you're interested. I have no affiliation with them. I just like their message and the results.

Some of the stuff you say about your child makes me think B12 deficiency, magnesium deficiency, etc. I'm not saying to supplement. I'm saying start reading. Wikipedia is a great place to start. Malabsorption, for a lot of people (my family included) is caused by eating the wrong foods. (The , homemade, whole wheat bread I was feeding my family turned out to be absolutely toxic for us.)

Good luck! My fingers are crossed for you that this will be your answer as it was for us.

[jccgf]

Originally Posted by jetbrujah

My daughter Grace was diagnosed with low tone at 18 months of age with speech delay ,poor motor skills (falling a lot) and social difficulty. Grace gets Physical,special Ed, Occupational and speech therapy and wears orthopedic shoes. Grace Is now almost 4 years old and we decided to try a gluten free diet to help her since she has so many delays.We are starting off changing her cereal and snacks and going from there. We were told no peanut products since it effects her ears. Grace is a Picky eater when it comes to chicken nuggets and gluten free food. If there are any parents going through this please let us know how the diet is working for your child. I will update this log once we fully change over to a gluten free diet

Kabe & Grace

I applaud your decision to give a gluten free diet a trial. As Kim mentions, some times other foods can be involved, particularly dairy, corn, soy.

I have known people or heard stories of children making great gains in speech and mobility on a gluten free diet.

Perhaps you've seen these references and others, but if not, it should add to your motivation:

Scientists Characterizes New Syndrome Of Allergy, Apraxia, Malabsorption
ScienceDaily (July 15, 2009)

"Published in the July/August issue of Alternative Therapies in Health and Medicine, the new study takes a major step toward identifying the potential mechanisms that may contribute to apraxia symptoms. In the study, Dr. Morris collected information from nearly 200 families with children who suffered from verbal apraxia in order to better characterize the symptoms and metabolic anomalies of a subset of children. The data clearly demonstrated a common cluster of allergy, apraxia and malabsorption, along with low muscle tone, poor coordination and sensory integration abnormalities. In addition, Dr. Morris was able to gather laboratory analyses in 26 of the children, which revealed low carnitine levels, abnormal celiac panels, gluten sensitivity, and vitamin D deficiency among others.

All children genetically screened carried an HLA gene associated with gluten sensitivity and celiac disease. "The sample size is still small and should be interpreted with caution," says Dr. Morris. "However this is of particular interest given the recent publication by Eaton and colleagues in the July 6 online edition of Pediatrics demonstrating a greater than 3-fold risk of autism in children born to mothers diagnosed with celiac disease. This brings some credibility to the anecdotal reports of gastrointestinal and behavioral improvements in children with autism spectrum disorders and/or verbal apraxia when eliminating gluten from their diets."

Children's Hospital & Research Center at Oakland (2009, July 15). Scientists Characterizes New Syndrome Of Allergy, Apraxia, Malabsorption. ScienceDaily. Retrieved July 15, 2009, from http://www.sciencedaily.com­

CONCLUSION: This study suggests that the variability of neurologic disorders that occur in CD is broader than previously reported and includes "softer" and more common neurologic disorders, such as chronic headache, developmental delay, hypotonia, and learning disorders or ADHD. Future longitudinal prospective studies might better define the full range of these neurologic disorders and their clinical response to a gluten-free diet.
Range of neurologic disorders in patients with celiac disease. PMID: 15173490


You mention your daughter's pickiness... she likes or doesn't like chicken nuggets? I make my own nuggets, and they are still one of my daughter's favorites. She started the diet when she was 5, and she's just about 14 now! Please ask for help if you need more help with food and snack ideas.

Cara