Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

One Last Question...sorry Guys


scottyg354

Recommended Posts

scottyg354 Enthusiast

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

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

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

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

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

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

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

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

If the Vit B12 level was less than 500, SUPPLEMENT

  • 2 weeks later...
cassP Contributor

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

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

    2. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

    3. - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

    4. - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442

    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems.
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
×
×
  • Create New...