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Wburell

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Feb 6, 2017
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Reason
PALS
Country
US
State
North Carolina
City
Raleigh
Haven't found much related to this but having an issue maybe someone can help with. Was diagnosed about a month and a half ago with ALS.

At the time Fasciculations were isolated to my left leg in which I have foot drop. They were absolutely pounding jumps at my knee cap. Maybe an occasional twitch in my arm when laying a certain way.

2 weeks later I started getting them in my stomach and right leg.

Now I have very mild fasciculations in my neck, arms, and back.
Slightly more annoying and harder fasciculations in my lower back, stomach, and legs.

I also tested positive in my blood test for celiac 4 weeks ago and have been Gluten free since minus a few screw ups. Biopsy scheduled for May.

So basically when I went GF the fasciculations went wild. When I get hungry they get more wild to the point I can see the jumps through 2 shirts and jeans.

This causes an issue at bed time because I can't eat after my riluzole and I can't sleep at all. I take melatonin and it doesn't phase me. I can no longer lay a certain way to get rid of them.

Has anyone else had similar problems with them being worse a 2-3 hours after a meal and any advice for sleeping? Just odd I go Gluten Free and I get signifigantly worse in symptoms
 
No problems like that no. However my neurologist says you can eat with/ around riluzole as long as it is fat free.
 
Good to know. I struggled to find a time that worked to take it. Stuck at like 9:30 am/pm right now which cuts me from eating between 7:30 and 10:30. 9:30 is my bed time haha and by 10pm my fasciculations are going haywire and I'm wide awake.

I'm thinking there's too much of a coincidence with the celiac too. My foot drop symptoms started in July 2015 and started eating GF a month ago. I've lost like 7lbs since then but my symptoms are going haywire like my body is in overdrive. All seems so odd.

Screenshot_20170302-173313_zpshinmbbls.png
 
The celiac dx may be faulty -- it's not a lock without the biopsy. While many PALS test positive for antibodies seen in celiac dz and a GF diet is being studied as an intervention, going GF requires careful dietetic supervision to ensure you are getting enough calories and the right nutritional ratios, a major issue in ALS. Your body might be telling you it's not getting what it needs.

Best,
Laurie
 
Alot of GF foods have added sugar and I have found that sugars and high glycemic foods (i.e. potatoes) increase my fasciculations. I would suggest going low glycemic for a bit and see if this helps.
 
The celiac dx may be faulty -- it's not a lock without the biopsy. While many PALS test positive for antibodies seen in celiac dz and a GF diet is being studied as an intervention, going GF requires careful dietetic supervision to ensure you are getting enough calories and the right nutritional ratios, a major issue in ALS. Your body might be telling you it's not getting what it needs.

Yea I'm actually disappointed my biopsy got pushed until Mid may. Would love to just know. I've been following a 2500 cal diet. Eating much more than I was prediagnosis. I used to drink 10 cups of coffee a day, and rarely ate breakfast or lunch. Basically treated my body like crap for 2 years.

My energy has skyrocketed. Wondering if I have bumped my metabolism up which is already higher in PALS.

Alot of GF foods have added sugar and I have found that sugars and high glycemic foods (i.e. potatoes) increase my fasciculations. I would suggest going low glycemic for a bit and see if this helps.
I'll definately take a look at this! I drink protein smoothies religiously maybe its high sugar or the high amount of fruit I'm eating.
 
Gluten free can be very easy. There is gluten free pasta, bread, pancakes.....everything you ate before. There is even gluten-free oats for making oatmeal. I don't take Riluzole so I don't know about the eating restrictions. You can try eating a non-fat Greek Yogurt smoothie with mixed frozen berries before bed. It won't give you many calories but has zero fat.

Regarding your general weight loss, go on Amazon and google gluten free pancake mix and gluten free pizza crust mix (you can also buy these in stores..Udi's makes a gluten free crust same one they use at pizza hut) You shouldn't have to give up any flavor or enjoyment by going gluten free. Mayo clinic advised me to go gluten free even though I tested negative for celiac and it helped my stomach issues.

Stress and caffeine make my twitches worse. Exercising makes them worse. Taking anxiety meds helps me but that's not for everyone. It might not make them go away but I don't focus on them.

You can be gluten sensitive even if you have a clean biopsy. I've seen many people improve many health conditions by going off gluten.

during the day, when you eat, try adding some coconut oil to your food and eat lots of good fat like avacado and nut butters. That'll help you get your weight back on.
 
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