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One Last Question...sorry Guys

scottyg354

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scottyg354 Enthusiast
scottyg354
Posted

The more I read this forum the more I'm starting to wonder. I have now also read a few post's that say tremors/seizures are a symptoms of Celiac.

Besides all the basics: Diarrhea, Constipatoin, Ribbon Stool, Bloating, Gas (Foul), Fatigue, Anxiety, Irritability, Brain Fog, Odd Pains.

I also noticed that over the past few years, I would wake up at night or in the morning with my whole body tremoring or shaking. I am wondering if anyone had ever had this happen before. I am hypothyroid but before diagnosis I thought I was diabetic.

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ravenwoodglass Mentor
ravenwoodglass
Posted

For me the trembling was a constant for a few years before diagnosis. One idiot doctor even thought I was an alcoholic because of it. I wasn't.

scottyg354 Enthusiast
scottyg354
Posted
  • Author

For me the trembling was a constant for a few years before diagnosis. One idiot doctor even thought I was an alcoholic because of it. I wasn't.

Well there has to be something going on. My dad and his mom were Type 2 Diabetics,mom's dad was Type 2 who turned type 1, Mom and Both her Parents were Hypothyroid. I have an aunt with Lupus. So as you can see Autoimmune Disorders are definetely common in my family.

Happyw5 Explorer
Happyw5
Posted

The more I read this forum the more I'm starting to wonder. I have now also read a few post's that say tremors/seizures are a symptoms of Celiac.

Besides all the basics: Diarrhea, Constipatoin, Ribbon Stool, Bloating, Gas (Foul), Fatigue, Anxiety, Irritability, Brain Fog, Odd Pains.

I also noticed that over the past few years, I would wake up at night or in the morning with my whole body tremoring or shaking. I am wondering if anyone had ever had this happen before. I am hypothyroid but before diagnosis I thought I was diabetic.

I was waking up in the night thinking that my bed was shaking(not sure if that is the same feeling you had), but it took me a while to realize that it was me shaking. My blood tests came back neg for celiac, however, I have continued with gluten free and it has not happened again. many other things have improved as well. So I now think that I am non celiac gluten intolerant.

scottyg354 Enthusiast
scottyg354
Posted
  • Author

I was waking up in the night thinking that my bed was shaking(not sure if that is the same feeling you had), but it took me a while to realize that it was me shaking. My blood tests came back neg for celiac, however, I have continued with gluten free and it has not happened again. many other things have improved as well. So I now think that I am non celiac gluten intolerant.

Yes, its not like a painful feeling. Just that you can't stop shaking. Very fast shakes. Then when you sit up you realize its not the bed but your whole body. It can really scare ya. I can tell you that much. From what I've been reading on here, the blood tests aren't always acurate.

GFinDC Veteran
GFinDC
Posted

Celiac disease can cause damage to the small intestine causing ma;l-absorption of nutrients. Lack of certain vitamins can do nasty things to a body. Nerve damage is one of them. Some people take b-vitamins, especially b-12 to help with nerve problems. There are also other vitamins that you could be low on. Doctors can have your blood tested for vitamin deficiencies. Not a bad thing to do.

scottyg354 Enthusiast
scottyg354
Posted
  • Author

Celiac disease can cause damage to the small intestine causing ma;l-absorption of nutrients. Lack of certain vitamins can do nasty things to a body. Nerve damage is one of them. Some people take b-vitamins, especially b-12 to help with nerve problems. There are also other vitamins that you could be low on. Doctors can have your blood tested for vitamin deficiencies. Not a bad thing to do.

I know I was tested for B-12 and I believe Folate, both of which were good. Only that came up odd on my last blood test was my MCHC .2 (32.9) below the range. Everything else was smack dab in the middle of the range.

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ravenwoodglass Mentor
ravenwoodglass
Posted

I know I was tested for B-12 and I believe Folate, both of which were good. Only that came up odd on my last blood test was my MCHC .2 (32.9) below the range. Everything else was smack dab in the middle of the range.

Be aware that if you are taking a vitamin with folate that can cause the B12 to read higher than it really is. B12 is a water soluable vitamin so it is very hard to take too much. You might want to try a sublingual B12 for a bit and see if it makes a difference in the nerve issues.

frieze Community Regular
frieze
Posted

If the Vit B12 level was less than 500, SUPPLEMENT

  • 2 weeks later...
cassP Contributor
cassP
Posted

I know I was tested for B-12 and I believe Folate, both of which were good. Only that came up odd on my last blood test was my MCHC .2 (32.9) below the range. Everything else was smack dab in the middle of the range.

what is MCHC????

eatmeat4good Enthusiast
eatmeat4good
Posted

I was also accused of being alcoholic due to temors and shaking.

I don't drink at all. When I said that, they thought I was lying and I got the lecture anyway. :blink:

It has all subsided on going gluten free but it took a while.

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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