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 Our Content
    eNewsletter
    Donate

Legs Are So Weak


holdthegluten

Recommended Posts

holdthegluten Rising Star

My legs have felt weak off and on for nearly a year.........Just recently they have gotten worse.......I can walk, but they feel so tired. I have also been really cold for no reason, then ill get hot. I have been a little shaky lately also. Why are my legs so tired (thighs). I know my problem isnt gluten for sure. I eat only natural whole fresh food, and all other items i use are safe. What does this sound like?


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

I had the exact same thing, only it got totally debilitating before I figured out what it was. Cutting right to the heart of the matter, I'll suggest two things; A magnesium supplement, and a sublingual methylcobalamin (B12) supplement. Do be sure the ones you select are gluten-free of course. The B12 I selected is by Source Naturals, 1mg, UPC#021078012931. It disolves under the tongue. I take three each day, as far apart as I can. This is to maximize absorption, as research indicates that the body can't absorb more than about 5mg per day, but around 3 seems to be the most efficient. The magnesium I chose is a powder, though if your digestion is up to it, you may be able to take capsules.

Anyway, I got tremendous benefits from these two things, and cannot say enough about how well they worked. I only wish I had figured it out right away, but it was this board and the fabulous members that helped me pin it down. The thing I cannot be sure of is how much I needed the B12, but I do know for certain that the magnesium has been truly indispensable.

I hope you get the relief you need!

Eric-C Enthusiast

Having just started a low carb diet and based on your sig you sound like you just went gluten free I'd say that could be part of your problem.

Cutting gluten is cutting out a lot of carbs and it takes a while for your body to adjust. Until we re-introduce carbs back into our diet in about another week we're taking 8 supplements a day. Ours is a bit more broad than the poster above the suggestion is a good one.

You sound like your going through carb withdrawl, I had the same things for the first few days.

We're taking 500mg Vitamin C once per day

Wal-Mart equivelent to Centrum twice a day

Wal-Mart equivelent to Calcium 600mg twice a day

That got rid of a lot of my leg cramping and fatique.

Since your not trying purposely to eat low carb try something like corn which is a high startch food and brocolli which is a complex carb food.

  • 2 weeks later...
sandpiper Apprentice
My legs have felt weak off and on for nearly a year.........Just recently they have gotten worse.......I can walk, but they feel so tired. I have also been really cold for no reason, then ill get hot. I have been a little shaky lately also. Why are my legs so tired (thighs). I know my problem isnt gluten for sure. I eat only natural whole fresh food, and all other items i use are safe. What does this sound like?

Hi holdthegluten,

Just read your post, I actually just joined today.

Sorry to hear that you are having this problem. This sounds as if it could be thyroid related, you did just have a baby last nov?

I have graves disease and was treated, on the daily replacement now and when I am getting too much of the meds I will have leg weakness and in the thigh area in particular. Also you mentioned the cold/hot sensations, our thyroids keep our thermostats in check. Just a suggestion to see how your levels are, and when the doctors are doing the blood work they most often will only do values for the standard TSH, since you have had a baby recently doing the free t3 and free t4 and antibodies are important. Hope that this thought helps you and that you start to feel better with some answers.

Take care,

Susie

sandpiper Apprentice
My legs have felt weak off and on for nearly a year.........Just recently they have gotten worse.......I can walk, but they feel so tired. I have also been really cold for no reason, then ill get hot. I have been a little shaky lately also. Why are my legs so tired (thighs). I know my problem isnt gluten for sure. I eat only natural whole fresh food, and all other items i use are safe. What does this sound like?

Hi holdthegluten,

So sorry about not reading the complete post with you being 27 and the daddy!!! Yikes really sorry. Not to say that the guys don't have problems with the thyroid, but when we women start to have the childern we do tend to trigger the immune system and the endocrine connection.

Again please except my apologies, and congratulations on your new baby. Another thought (if you want it), low potassium can give you some of the symptoms you are having.

Take care,

Susie

kenlove Rising Star

Almost two years I had the same problem while being diagnosed. I couldnt walk without a cane and for a week, couldnt walk at all. When I was finally diagnosed, I went totally gluten-free and had some hormone replacement therapy ( I'm male 56 and we can loose them too) -- In two weeks I was back to climbing around mountains in Hawaii. I also take many of the vitamins others mentioned

but I would check your testosterone and other hormones and amino acid levels.

Ken

My legs have felt weak off and on for nearly a year.........Just recently they have gotten worse.......I can walk, but they feel so tired. I have also been really cold for no reason, then ill get hot. I have been a little shaky lately also. Why are my legs so tired (thighs). I know my problem isnt gluten for sure. I eat only natural whole fresh food, and all other items i use are safe. What does this sound like?
CDFAMILY Rookie

Hi Holdthegluten,

I too had very weak legs and I did get worse for over a year where I was walking like someone with Parkinsons.

My tTG's and EMA's also increased. I was on a totally natural diet except for some rice pasta and Nut Thin crackers. My house was totally gluten free also. I wrote to the company that manufactures the Nut Thins and they wrote back that there can be up to 200ppm's of wheat in their product. This was a year or so ago so they may have lowered the amount of ppm's but I stopped eating anything that has any wheat in it even though they say it is safe for some it may not be for you.

The other change I made was adding 8,000IU of Vitamin D3 because my doctor found my levels were low. I am thinking it really was the vitamin D3 that got my legs moving again though.

I had been taking mega doses of Methylcobalamin B12 for a year before I was diagnosed which seemed to help some of the buzzing, tingling and neuropathy stuff but was very confused why my gait was getting slower and slower. It took me 1 year and 8 months before my celiac numbers dropped slightly below high.

My suggestion to you is to go to your doctor and discuss your weakness and request a complete vitamin and mineral workup that includes Vitamin D3, B12, Homocysteine, MMA, Folic Acid, copper, zinc, chromium, selenium, Vitamin B1, B6, E, Magnesium and Maganese.

I would also ask for another celiac panel to see what your counts are. If the Gliadin IgA and IgG's are going down that means your are probably not getting extra gluten which is good.

I would also suggest getting a TSH and Free T4 and Free T3 test done to make sure you are not going hyper or hypothyroid. My daughter came down with Graves about 1 year after her Celiac diagnosis. She was exhausted and was very weak and could hardly walk around the block.

Finally you might want to check for anemia and get the full panel with the Ferritin, Saturation, Total Iron and TIBC. Sometimes your RBC count is fine but you might not be storing the iron and it will make you very tired and weak.

I know this sounds like a lot but my whole family has Celiac now and everyone had something that was unusually low.

Doctors think once you go on the diet you get better in a few weaks, but I think many are finding out it takes a long time for some to get healthy again.

Good luck and if you don't want to do all of the blood tests, I would highly recommend you at least get your vitamin D3 checked. I would google this vitamin and study it because I am sure this one helped me turn the corner with my Celiac disease. I would also want you to know that most labs are still saying the low range is 20. That is deathly low and you want your numbers on the high end. Some say 50-60. On my lab report it was 20 but included a statement that 35 was the new low.


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



Celiac.com Sponsor (A8-M):



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. - Scott Adams replied to Katiexox's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Advice please

    2. - nanny marley posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Help needed

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

      Advice please

    4. - Russ H replied to AllyJR's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Confused about my results

    5. - Katiexox posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Advice please


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,633
    • Most Online (within 30 mins)
      7,748

    skunk
    Newest Member
    skunk
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Parent-to-parent, I hear your exhaustion and worry loud and clear – what you’re describing goes far beyond typical toddler troubles. Your daughter’s screaming night pain, terrible bloating, stalled growth, and constant infections are textbook red flags for celiac disease or another serious gluten-related condition. While her blood test came back negative, there are critical reasons not to rule it out yet. First, celiac tests are notoriously unreliable in kids under 3 – their tiny immune systems often don’t produce enough antibodies to register on standard blood work, especially if she wasn’t eating consistent gluten beforehand (which you mentioned was a struggle). Her iron deficiency alone is a glaring clue, as it’s one of the most common signs of undiagnosed celiac in little ones. The fact that she’s already dairy/soy-free yet still suffering suggests something bigger is at play. It could still be celiac (a pediatric GI should consider an endoscopy with biopsies, the gold standard for diagnosis), or possibly non-celiac gluten sensitivity (NCGS) – which doesn’t show up on tests but can cause identical agony. Her recurring mouth ulcers and infections also hint at the immune dysfunction seen in celiac. Until you see the specialist, I’d quietly start a gluten-free trial (after documenting her current symptoms carefully with photos/videos of the bloating and pain episodes). If you see improvement in 3-4 weeks, that’s powerful evidence to bring to the doctors. You’re not being dramatic – you’re being the exact advocate your daughter needs. If the pediatrician brushes you off, look them in the eye and say: “What else could explain ALL these symptoms together? If it’s not celiac, what’s our next step to stop her suffering?” Keep pushing – moms’ instincts are rarely wrong about this stuff. For now, focus on small wins: snap daily pics of her belly to show the distension, ask for a fecal calprotectin test (checks gut inflammation), and know this internet stranger is rooting for you both. She’s lucky to have you fighting for her.
    • nanny marley
      So I have been going threw celiac testing for some time unfortunately I had been 1 year gluten free Wen I had the blood test do came back negative I had other blood tests done my calprotein came in very high and my crp was elevated have been sent to gastroenterology she has put me in for a colonoscopy wat I can't understand it says take 2 tablets  6 days before of  senna for 5 day before my plenvu prep which I start tomorrow yet it says if ibd colitis crone's or others are present don't take the senna but I don't know if I have these yet my brother tho has the same symptoms has just be diagnosed with colitis and didn't take the senna can anyone shed light on this for me  has I  start the prep tomorrow I already have very loose bowels seems a lot to go threw for 6 days ? I'm new to all this do I'm just a little confused here ant help round be appriciated 🙏 also I'm so anxious wat to expect with the colonoscopy has anyone got any advise thanks in advance 🤗
    • trents
      Can you post what blood tests were done specifically for celiac disease, the results and reference ranges if available? If her gluten intake was reduced prior to the blood draw it certainly could result in false negatives on some tests. There is also the possibility that she has NCGS (Non Celiac Gluten Sensitivity). 
    • Russ H
      There is a good paper here on causes of seronegative villous blunting. The most common is seronegative coeliac disease. Not All That Flattens Villi Is Celiac Disease: A Review of Enteropathies
    • Katiexox
      Desperately in need of some advice of possible 🫠 (sorry for the long post but I’m one exhausted mama) My daughter is just gone 2 years old, for as long as I can remember she’s had problems with her stomach, she was diagnosed with a Dairy and Soy allergy so has been dairy and soya free since around 7 weeks old. I’ve been begging the doctors to listen to me and to look into it, I came across celiac disease a few months ago and pushed for her to be tested. Some of her symptoms are  - Extreme stomach pain, she’s never had a night where she isn’t rolling around in her bed screaming in pain (not just a cry, she will be fast asleep and then let out a high pitch scream and start crying) this will go on all night! - Gas, I know gas is normal but she just doesn’t stop all day and night, and it smells so so bad! You can hear her from the other rooms in the house  - Bloating  - Slow growth and weight gain she’s still in 9-12 size clothes at 28 months - Iron deficiency  - Diarrhoea or constipated, or really mushy  - Constantly tired  - Complains of leg pains and gets cramps - Mouth Ulcers  - Gets infections like ear and tonsillitis every few weeks She’s super super fussy with food and just won’t eat! So trying to get gluten into her wasn’t easy as most days she just point blanks refuses  She had her blood test done last week and they said it came back clear but was showing she was pretty anemic! We are currently waiting for a referral to see a pedantic doctor and her dietician.  Im just completely exhausted, she’s constantly poorly and miserable and I hate seeing her like this and being fobbed of by doctors who just don’t seem to understand that I know my baby and I know something isn’t right!  Can the test be unreliable?  Any advice welcome🥺  
×
×
  • Create New...