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Hi my name is Valerie, my 6 y/o DD Avery has been having some more strange symptoms and I'm wondering if anyone else has seen or dealt with something similar.

First things first we have been to the Dr and return again on Friday afternoon.

Avery was diagnosed Celiac, by endoscopy in December. Once we started her gluten free she started to thrive and do amazingly well. In 4 months she gained 10 lbs and grew between 4-5 inches. HUGE growth spurt. She started to chub up and look just incredible. Then about 6 weeks ago, she came down after waking saying she felt shaky inside. Her whole body was visibly quivering, I gave her some juice and made her a hearty breakfast which seemed to help. The next day she woke sick with a virus, so the next few days of shaky complaint I attributed to being sick. I gave her 2 weeks and made extra effort to be sure she had a good source of protein with each meal, just in case. Then it seemed to disappear for about a week and returned. We've been to the Ped. She did a glucose tolerance test which came back normal. The Ped said it could be related to going gluten-free, but the dietitian says no way, I lean more with the dietitian. Anyways, now in the last 2 weeks since the blood tests it's gotten a bit worse, her face kind of twitches on one side of her mouth. Every morning when she wakes up her body is shaking so bad she has a hard time walking down the stairs. It doesn't seem to be related to blood sugar because it just goes as quickly as it comes. Like I said we have an appt on Friday with her GI who is far more willing to be investigative than her ped, which is why I'm waiting. Most of her Celiac symptoms were neurological, and now I'm worried that maybe there was some damage done.

Anyways, I don't know if anyone has had anything similar but with the ped and dietitian at a loss, I'm grasping in hopes of finding something. I feel so bad, nothing ever seems to go right for her and I just want her to feel good. Oh and in December her thyroid function was properly tested and came back normal, all of her vitamins were within normal, with the exception of her Calcium which was slightly low but he expected it to improve with diet.

--Valerie--

Mum to Avery, age 6 - diagnosed December/08

-ataxia & peripheral neuropathy were her main symptoms-

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Could it be milk?

My grandson had a seizure from gluten and has autistic symptoms from milk. Soy and corn both cause almost immediate meltdowns.

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Hi Valerie,

This is interesting and I'd like to hear what your GI says. I have a 17 month old who was diagnosed last month with Celiacs. Shortly after we took her off gluten, she started to have these "spams" where she grits her teeth, shakes and turns red in the face. She'll have anywhere from 0-10 spasms a day and they only thing we see in common is a level of frustration before they occur. We videotaped her and showed our GI, our ped and a neuro and no one is sure what it is, and no one thinks it looks like a seizure. We're seeing the neuro this Tuesday for a consult.

Even though your daughter's symptoms are somewhat different, I do wonder if there is something causing these (possible) neurological episodes. Keep me posted and I'll let you know how things go with our appt. too.

Hope you can find some answers.

Hi my name is Valerie, my 6 y/o DD Avery has been having some more strange symptoms and I'm wondering if anyone else has seen or dealt with something similar.

First things first we have been to the Dr and return again on Friday afternoon.

Avery was diagnosed Celiac, by endoscopy in December. Once we started her gluten free she started to thrive and do amazingly well. In 4 months she gained 10 lbs and grew between 4-5 inches. HUGE growth spurt. She started to chub up and look just incredible. Then about 6 weeks ago, she came down after waking saying she felt shaky inside. Her whole body was visibly quivering, I gave her some juice and made her a hearty breakfast which seemed to help. The next day she woke sick with a virus, so the next few days of shaky complaint I attributed to being sick. I gave her 2 weeks and made extra effort to be sure she had a good source of protein with each meal, just in case. Then it seemed to disappear for about a week and returned. We've been to the Ped. She did a glucose tolerance test which came back normal. The Ped said it could be related to going gluten-free, but the dietitian says no way, I lean more with the dietitian. Anyways, now in the last 2 weeks since the blood tests it's gotten a bit worse, her face kind of twitches on one side of her mouth. Every morning when she wakes up her body is shaking so bad she has a hard time walking down the stairs. It doesn't seem to be related to blood sugar because it just goes as quickly as it comes. Like I said we have an appt on Friday with her GI who is far more willing to be investigative than her ped, which is why I'm waiting. Most of her Celiac symptoms were neurological, and now I'm worried that maybe there was some damage done.

Anyways, I don't know if anyone has had anything similar but with the ped and dietitian at a loss, I'm grasping in hopes of finding something. I feel so bad, nothing ever seems to go right for her and I just want her to feel good. Oh and in December her thyroid function was properly tested and came back normal, all of her vitamins were within normal, with the exception of her Calcium which was slightly low but he expected it to improve with diet.

--Valerie--

Mum to Avery, age 6 - diagnosed December/08

-ataxia & peripheral neuropathy were her main symptoms-

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How was it determined that milk and gluten caused these symptoms. Just curious since my celiac daughter has been having some strange spasms since taking her off gluten.

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My son had similar symptoms in January they have since resolved but i am sure they were due to low potassium. He was on a couple of medications which deplete K but there was nothing in his diet at was putting it back.

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the similar symptoms were the shakes. He was shaking so badly he frighten himself. He was having side effects to the asthma medications to.So it was difficult to sort out what was caused by what. However potassium was not in any of his foods or vitamins and the shakes went away when it was replaced. However that might not be the answer to every case it is just worth considering vit and mineral deficiencies particulary after a growth spurt.

For tics I fine that an epsom salts bath can help.

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Could it be milk?

My grandson had a seizure from gluten and has autistic symptoms from milk. Soy and corn both cause almost immediate meltdowns.

I don't believe that it's milk. It could be, but she did a lactose test and was free and clear so I don't think milk is an issue. But I am nervous that it could be seizures, the GI said that it's possible she has calcification in her brain. When I thought about it my Mom had very severe lupus and she had calcification and seizures that started out similar. So I'll be requesting a neuro referral and then I guess we'll go from there.

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Hi Valerie,

This is interesting and I'd like to hear what your GI says. I have a 17 month old who was diagnosed last month with Celiacs. Shortly after we took her off gluten, she started to have these "spams" where she grits her teeth, shakes and turns red in the face. She'll have anywhere from 0-10 spasms a day and they only thing we see in common is a level of frustration before they occur. We videotaped her and showed our GI, our ped and a neuro and no one is sure what it is, and no one thinks it looks like a seizure. We're seeing the neuro this Tuesday for a consult.

Even though your daughter's symptoms are somewhat different, I do wonder if there is something causing these (possible) neurological episodes. Keep me posted and I'll let you know how things go with our appt. too.

Hope you can find some answers.

Thanks! I hope so too. My daughters main symptoms were neurological, she had very bad neoropathy and ataxia both of which have improved greatly. She always had a tremor though and thats not gone. She's been tested for everything, which her GI is redoing now. He suggested that it could be brain calcification which is what happened to my mother with her lupus, so I'll be requesting a neuro referral and then I guess wait and see. Good luck at your appt. Feel free to email me if you'd like to talk more about this

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I don't believe that it's milk. It could be, but she did a lactose test and was free and clear so I don't think milk is an issue. But I am nervous that it could be seizures, the GI said that it's possible she has calcification in her brain. When I thought about it my Mom had very severe lupus and she had calcification and seizures that started out similar. So I'll be requesting a neuro referral and then I guess we'll go from there.

The protein in dairy is casein which is reportedly very similiar to gluten in composition. Lactose intolerance generally has bowel symptoms and casein sensitivities are generally neuro and/or ear infections.

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