Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Fatigue And Muscle Weakness


DucksnPucks

Recommended Posts

DucksnPucks Rookie

Morning y'all!

Battling fatigue and muscle weakness this morning. It's been coming and going over the past couple weeks. I've been gluten-free for over a month, and I know its still early, but it feels like I wax and wane a bit. Some days I can make it through to the end of the day before I get wore out, other days like today I'm exhausted right out of bed. The good news is that the headaches, brain fog and light headedness have all disappeared. I'm doing very well watching what I eat, just trying to learn how to cope with the fatigue which seams to be the worst symptom.

Anyone else feel like no matter how many hours of sleep you get enough, you never feel rested when you wake up? Or just feel off?

Also (tell me if I'm sharing too much) my bowel movements seem to be much more normal. No more pebbles, "C" or floaters. Is this a good sign?

Have a great day everyone!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Celiac Mindwarp Community Regular

BMs welcome here!

Sounds great if they are more normal, seems to happen for quite a few of us.

Tiredness along with insomnia are the slowest to improve for me.

I am 3 months gluten-free now and definitely was up and down to start. A few weeks in I felt better than I had for maybe 7 years. Maybe 80%. I got glutened and dropped from that, but I would say I regularly am at 60% now with regular higher peaks. I used to be about 40 to 50%.

I don't get all over muscle problems, but I have had huge improvement to hand arm neck and back pain and plantar fasciitis (foot pain under heel).

I wasn't sure if it was real until I got glutened and the foot pain came back.

I don't know if it would be helpful for you, but I wrote out a list of symptoms I used to have, and then every few weeks I go back and revisit. I have found it useful to see the progress, especially if I am a bit down.

I have also added to my original list as I find symptoms I didn't even realize weren't normal and remembered things from the last 20 odd years and that people have mentioned here.

I gave these lists to my GI and he found it very helpful in giving me a diagnosis of NCGI cannot rule out celiac (I was unable to complete a gluten challenge).

Your enthusiasm comes through, it is great to see you have improvements

Link to comment
Share on other sites
Chiana Apprentice

You're getting there! It took me probably 4-5 months for the excessive sleeping to stop. I was sleeping excessively before (12-14 hours a night), so for me it felt like it would never end.

I can now set my watch to my BMs. I have found I am more regular than non-celiacs, and have fewer digestive issues than non-celiacs, as long as I avoid the gluten. Hopefully, you'll get there, too.

Link to comment
Share on other sites
DucksnPucks Rookie

Great idea on the lists, I've often thought about doing that as well.

I find that as the day goes on the fatigue tends to go away a bit and I feel a little better, especially after I eat. But usually by the late afternoon I'm so tired that I can barely walk. Then i get a small second wind later at night.

Question for everyone, does getting more than 8 hours of sleep help any?

BMs welcome here!

Sounds great if they are more normal, seems to happen for quite a few of us.

Tiredness along with insomnia are the slowest to improve for me.

I am 3 months gluten-free now and definitely was up and down to start. A few weeks in I felt better than I had for maybe 7 years. Maybe 80%. I got glutened and dropped from that, but I would say I regularly am at 60% now with regular higher peaks. I used to be about 40 to 50%.

I don't get all over muscle problems, but I have had huge improvement to hand arm neck and back pain and plantar fasciitis (foot pain under heel).

I wasn't sure if it was real until I got glutened and the foot pain came back.

I don't know if it would be helpful for you, but I wrote out a list of symptoms I used to have, and then every few weeks I go back and revisit. I have found it useful to see the progress, especially if I am a bit down.

I have also added to my original list as I find symptoms I didn't even realize weren't normal and remembered things from the last 20 odd years and that people have mentioned here.

I gave these lists to my GI and he found it very helpful in giving me a diagnosis of NCGI cannot rule out celiac (I was unable to complete a gluten challenge).

Your enthusiasm comes through, it is great to see you have improvements

Link to comment
Share on other sites
1desperateladysaved Proficient

Are you taking some B vitamins, or have you found you are deficient in anything? My fatigue improves by better nutrition. I haven't ever tried sleeping for as long as my body wanted ,, because I perceive I would still feel the fatigue if it was there. I also have responsibilities to perform as most of us do. The fatigue goes away and comes back spontaneously, so I don't think that more sleep would solve it.

I hope you will find a way to improve your energy level.

Diana

Link to comment
Share on other sites
RiceGuy Collaborator

I second the nutritional supplements. Besides the B vitamins, I'd suggest magnesium, and a separate methylcobalamin B12 sublingual tablet. These have made a world of difference for me. I've heard good things about CoQ10, and its importance in energy production, so I'm thinking of trying that too.

Link to comment
Share on other sites

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    2. - Zackery Brian replied to rsvtwin6's topic in Food Intolerance & Leaky Gut
      6

      Gluten and 30 other Items causing me Severe Muscle Inflamation Pain

    3. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    4. - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet

    5. - knitty kitty replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,062
    • Most Online (within 30 mins)
      7,748

    Sherry Glaser
    Newest Member
    Sherry Glaser
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
×
×
  • Create New...