Jump to content

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Weakness/fatigue Question

motif

Recommended Posts

motif Contributor
motif
Posted

Hi,

I just want to check with those of you who having these symptoms because I'm still not sure if I'm getting that weakness, tingling etc from spine problems or from celiac disease. When I've read on other thread about symptoms everything actually match to mine.

I want to ask one thing though that weakness I'm getting come and go all of the sudden usually not gradually,

so that looks to me more like spine can cause. But maybe not, how do you get this weakness/fatigue symptom?

Also weakness I get is more like muscle kind, not breath related. I can still e.g. run or swim but I feel dizzy.

thanks

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

Celiac.com Sponsor (A8-M):


RiceGuy Collaborator
RiceGuy
Posted

I had such symptoms until I started taking sublingual methylcobalamin (B12) and magnesium. I cannot say enough about how well they work. Both are critical for muscle and nerve function too, so it makes sense.

I'm sure others will be able to offer their experiences too. I hope you feel better soon!

motif Contributor
motif
Posted
  • Author
I had such symptoms until I started taking sublingual methylcobalamin (B12) and magnesium. I cannot say enough about how well they work. Both are critical for muscle and nerve function too, so it makes sense.

thanks.

but you're getting this all of the sudden? like a switch from good feeling to weak feeling?

how much do you take B12? I bought B12 in pills, is it OK too?

RiceGuy Collaborator
RiceGuy
Posted
thanks.

but you're getting this all of the sudden? like a switch from good feeling to weak feeling?

how much do you take B12? I bought B12 in pills, is it OK too?

I was in so much pain that there was no such thing as feeling good. I figure I had a very drastic deficiency.

As for how much B12 to take, the research indicates about 5-6 mg is all the body can absorb in one day, with approximately 3 mg being the most efficient. Therefore I take 1 mg, three times daily, spaced as far apart as possible. The methylcobalamin form is the best one to take. Most pills are cyanocobalamin, which is actually made with cyanide, so I hope it's not that. The sublingual type is usually recommended for best absorption, and given the digestive issues many (if not all) of us face, I'd agree.

However, I do believe the magnesium was the most critical of the two supplements for me. So I'd recommend both. The amount of magnesium you may need will likely be different that myself, so it's probably a good idea to start with the suggested amount on the label, and work your way up if you feel you need more. Too much will tend to have a similar effect to Milk of Magnesia.

motif Contributor
motif
Posted
  • Author
I was in so much pain that there was no such thing as feeling good. I figure I had a very drastic deficiency.

I don't feel pain all the time, only sometimes cramps, gases, bloating etc. More often though theses attacks of tingling and weakness.

RiceGuy Collaborator
RiceGuy
Posted
I don't feel pain all the time, only sometimes cramps, gases, bloating etc. More often though theses attacks of tingling and weakness.

Tingling and weakness I did have quite often, if not constantly. I was also finding it difficult to hang on to things, keeping my balance, and various other issues. But keep in mind that the symptoms can vary so widely from person to person, that more likely than not, there will be some differences, even for the same cause(s).

Anyway, the supplements I mentioned are relatively inexpensive, and very safe, so I'd give it a shot. I wish I had not hesitated as I did. It would've been soooooo much better.

jitters Apprentice
jitters
Posted

I took RiceGuy's advice and began supplementing with Magnesium. Boy is there a difference!! I had such major fatigue that I felt like I had narcolepsy. I've been on Magnesium for about 6 days now and am almost feeling "normal". I haven't had as much fatigue and where I used to have joint pain and nerve issues is much better, I can barely tell its there. Its worth doing!

Also, I do take a B12 as well, but not as regularly. I need to start doing that!

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

Celiac.com Sponsor (A8-M):


  • 2 weeks later...
motif Contributor
motif
Posted
  • Author
I took RiceGuy's advice and began supplementing with Magnesium. Boy is there a difference!! I had such major fatigue that I felt like I had narcolepsy. I've been on Magnesium for about 6 days now and am almost feeling "normal". I haven't had as much fatigue and where I used to have joint pain and nerve issues is much better, I can barely tell its there. Its worth doing!

Also, I do take a B12 as well, but not as regularly. I need to start doing that!

how much of magnesium did you take? as normal dose or more?

jitters Apprentice
jitters
Posted

I am just at the recommended dose right now, but am thinking about kicking it up a notch and seeing if that helps. Honestly, I think I need to re-vamp my diet too. Its not JUST a lack of vitamins for me, its also what I'm eating. I ate "paleo" for 2 months a couple years ago and have NEVER felt so great in my life. It was amazing! I ate meat, fruits, veggies (except for corn and potatoes), and nuts. And thats it. I also replaced my coffee with tea. It was so hard at first but after a couple weeks I felt so good physically and mentally. It was amazing.

I highly recommend it.

jitters Apprentice
jitters
Posted

I am just at the recommended dose right now, but am thinking about kicking it up a notch and seeing if that helps. Honestly, I think I need to re-vamp my diet too. Its not JUST a lack of vitamins for me, its also what I'm eating. I ate "paleo" for 2 months a couple years ago and have NEVER felt so great in my life. It was amazing! I ate meat, fruits, veggies (except for corn and potatoes), and nuts. And thats it. I also replaced my coffee with tea. It was so hard at first but after a couple weeks I felt so good physically and mentally. It was amazing.

I highly recommend it.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,553
    • Most Online (within 30 mins)
      7,748
    Jennifer CCC
    Newest Member
    Jennifer CCC
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.