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

Enegy level extremely low


Sicilygirl

Recommended Posts

Sicilygirl Rookie

Hello,

 

Just wondering if anybody can help me out with energy levels. I am taking iron, vitamind3 and multivitamin as well and I cant seem to get back to how I was before. How long do the villi take to heal? I am in my 50s and I read somewhere that it can take longer to heal. I just got diagnosed in October2024 and I am brutely impatient any help would be greatly appreciated.

Sophia

 


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

Healing and regaining energy after a celiac diagnosis can be a frustratingly slow process, but you're not alone in feeling this way! Everyone's healing journey is different, and factors like age, how long celiac was undiagnosed, and the extent of intestinal damage can all play a role.

In general, villi can begin to heal within a few weeks to months after starting a strict gluten-free diet, but for some adults—especially those diagnosed later in life—it can take a year or more to see significant improvement. Studies suggest that older adults may heal more slowly, but it does happen with consistent gluten avoidance.

Since you're already taking iron, vitamin D3, and a multivitamin, you're on the right track. Here are a few additional tips that might help:

Be Patient with Your Body: It’s hard to wait, but healing takes time. Track your progress in small ways—maybe energy levels on a scale of 1-10 each week—to notice gradual improvements.

Check for Other Deficiencies: Sometimes celiacs have trouble absorbing other nutrients, like B12, magnesium, or zinc, which can also affect energy levels. Your doctor may want to test for these.

Consider Other Conditions: Fatigue can be linked to other issues like thyroid problems, adrenal fatigue, or even sleep disturbances, which can sometimes occur alongside celiac disease. It might be worth discussing this with your healthcare provider.

Stay Active, but Pace Yourself: Gentle exercise, like walking or yoga, can help improve energy levels, but don’t push yourself too hard—listen to your body.

Hydration and Balanced Meals: Make sure you're drinking enough water and eating a balanced gluten-free diet with plenty of whole foods. Sometimes highly processed gluten-free products can leave you feeling sluggish.

Remember, healing isn’t just physical—it’s also mental. You’ve made a huge, positive change by going gluten-free, and your body is working hard to repair itself. It’s okay to feel impatient, but know that you're moving in the right direction. Hang in there—you’ll get there!

Sicilygirl Rookie

Thank you very much Scott I am glad that there is a light at the end of this tunnel. I am just very impatient and I want to heal asap. I apreciate your honesty in this isnce I am getting absolutely knowhere with the medical system. A year or more? God help me this is hard.

But, I am so grateful that I found a site like your that can help me and put my mind at ease in all of this. An you started this and you are ghelping alot of us get through this little by little. I thank you for starting this.

Is there a cure coming that you know of? I am in Canada and there is nothing here.

 

Sophia

 

 

Scott Adams Grand Master

No cure so far, and a treatment might still be years away.

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:

 

 

EricaFilpi Newbie

Hey SicilyGirl,

I feel your pain, I am 51 and was diagnosed in August with Celiac and actually had to have iron transfusions because my iron was so low. I never had energy, going to one store wiped me out, it was horrible. Then the weirdest thing happened two weeks ago, I realized I had energy when I was talking on a phone and moving heavy Christmas boxes around like they were nothing, and then I ran off to make dinner. Talk to your doctor about your concerns and give yourself some grace. 

Scott Adams Grand Master

@EricaFilpi, please tell us more about your recovery...did you need to take iron infusions or supplements? What other supplements are you taking? I'll assume you've been gluten-free since August.

DebJ14 Enthusiast

My iron was not low, but my B-12 levels were extremely low.  I had zero energy.  I had micronutrient testing and I was put on a boatload of supplements.  Everything recovered pretty quickly except for my D, B12 and antioxidant levels.  The doctor ordered genetic testing and found that I have a genetic inability to process all three.  Thus, my dosages were increased, and I was advised I would need to take them for the rest of my life.

 


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



Celiac.com Sponsor (A8-M):



Sicilygirl Rookie
On 1/15/2025 at 6:51 AM, EricaFilpi said:

Hey SicilyGirl,

I feel your pain, I am 51 and was diagnosed in August with Celiac and actually had to have iron transfusions because my iron was so low. I never had energy, going to one store wiped me out, it was horrible. Then the weirdest thing happened two weeks ago, I realized I had energy when I was talking on a phone and moving heavy Christmas boxes around like they were nothing, and then I ran off to make dinner. Talk to your doctor about your concerns and give yourself some grace. 

My iron is good I had it checked 3 times prior to being diagnosed with Celiac. My energy is better at night which is weird. I need it more during the day to function. This  has been hard to deal with emotionally, mentaly and pysically. Thank God that this website exists. Its helped me considerably since the doctor was of no help. Every body is different and I know that it will take me longer to heal I just have to stay positive and wait.  Also are you hungry ever?

Sicilygirl Rookie
On 1/8/2025 at 9:10 PM, Scott Adams said:

Healing and regaining energy after a celiac diagnosis can be a frustratingly slow process, but you're not alone in feeling this way! Everyone's healing journey is different, and factors like age, how long celiac was undiagnosed, and the extent of intestinal damage can all play a role.

In general, villi can begin to heal within a few weeks to months after starting a strict gluten-free diet, but for some adults—especially those diagnosed later in life—it can take a year or more to see significant improvement. Studies suggest that older adults may heal more slowly, but it does happen with consistent gluten avoidance.

Since you're already taking iron, vitamin D3, and a multivitamin, you're on the right track. Here are a few additional tips that might help:

Be Patient with Your Body: It’s hard to wait, but healing takes time. Track your progress in small ways—maybe energy levels on a scale of 1-10 each week—to notice gradual improvements.

Check for Other Deficiencies: Sometimes celiacs have trouble absorbing other nutrients, like B12, magnesium, or zinc, which can also affect energy levels. Your doctor may want to test for these.

Consider Other Conditions: Fatigue can be linked to other issues like thyroid problems, adrenal fatigue, or even sleep disturbances, which can sometimes occur alongside celiac disease. It might be worth discussing this with your healthcare provider.

Stay Active, but Pace Yourself: Gentle exercise, like walking or yoga, can help improve energy levels, but don’t push yourself too hard—listen to your body.

Hydration and Balanced Meals: Make sure you're drinking enough water and eating a balanced gluten-free diet with plenty of whole foods. Sometimes highly processed gluten-free products can leave you feeling sluggish.

Remember, healing isn’t just physical—it’s also mental. You’ve made a huge, positive change by going gluten-free, and your body is working hard to repair itself. It’s okay to feel impatient, but know that you're moving in the right direction. Hang in there—you’ll get there!

thank you Scott, what can I do to improve my appetite?

Scott Adams Grand Master

Are there any things that you enjoy eating that you can have gluten-free versions of? For example, pizza, mac & cheese, pasta, etc? If so, perhaps try to include those in your diet more until your appetite recovers.

Of course cannabis is famous for improving appetites, but I would only go that direction if you have serious weight + appetite issues that you can't solve via other methods.

Sicilygirl Rookie

Hello Scott,

 

Yes I have done all that and I am eating chips and turtles, and  gluten free pasta. But still nothing. Why is that have little appetite?

Scott Adams Grand Master

It's difficult to say exactly why, but it is worth discussing this with your doctor, as it can by a symptom of other things--especially if you're also losing weight.

Sicilygirl Rookie

Hello Scott,

I did lose weight at the beginning of diagnosis and I know that it will take time to put on the weight I did lose. I think I have no appetite because this has been a roller coaster of emotions and a Big change on my body and its out of whack mentally and pysically. I think I am just depressed to be honest.

 

knitty kitty Grand Master

Hi, @Sicilygirl,

I had lost a great amount of weight, felt depressed, and had no appetite early on.  I found that taking Thiamine in the form Benfotiamine extremely helpful.  

Doctors routinely check B12 and Vitamin D, but they fail to test for deficiencies in other B vitamins like Thiamine, because blood tests for other vitamins are not accurate measures of deficiencies.  

Low Thiamine can result in depression, anxiety, unintentional weight loss, loss of appetite, and  emotional lability (quickly changing emotions and moods), and gastrointestinal symptoms (gastrointestinal Beriberi).  These symptoms of low thiamine can be easily brushed aside and contributed to other things.  The best way to tell if one is low in thiamine us to take it and look for health improvement.  Thiamine is safe and nontoxic even in high doses.  No harm, no foul for trying it.  

I took a B 50 Complex along with 300 mg Benfotiamine twice a day with the first two meals of the day.  A one a day multivitamin does not provide sufficient amounts to overcome the  malabsorption of celiac disease and correct low vitamin levels stored inside cells.  The eight B vitamins are water soluble, so any extra or unabsorbed is easily excreted in urine.  The eight B vitamins work together.  Thiamine interacts with each of the other B vitamins.  If there's not sufficient thiamine, the other B vitamins are not utilized and not stored inside cells.  Thiamine is needed for iron absorption.  Thiamine is needed to activate Vitamin D.

We need more Thiamine when we are physically stressed by illness, emotionally stressed, and physically active.  Coping with Celiac covers all three.  Thiamine stored inside cells can become depleted within three days to three weeks.  Symptoms can change depending on how much thiamine is absorbed from your diet.  A twenty percent increase in dietary thiamine results in an eighty percent increase in brain activity, so symptoms can wax and wane mysteriously.  The brain just thinking can use as much thiamine as leg muscles use running a marathon.  Mitochondria become sick and die without sufficient Thiamine.  

 

Doctors aren't required to take many nutrition courses in their training period.  (Twenty hours of nutrition education out of seven years at medical schools funded by pharmaceutical companies.  Vitamins cannot be patented, so doctors cannot make money by prescribing vitamins like they make money by prescribing pharmaceutical drugs.).   

I started feeling better within a very short period of time after taking Benfotiamine and a B Complex.  I also took magnesium, because thiamine and magnesium make life sustaining enzymes together.   Giving the body the vitamins and minerals it needs to function will increase your health.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,896
    • Most Online (within 30 mins)
      7,748

    SusanWestlakeMom
    Newest Member
    SusanWestlakeMom
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      The last time my vitamin D was very low, according to a lab test, was before I was diagnosed with celiac disease. I've been supplementing ever since, and now the numbers on the lab tests are within their normal ranges, oftentimes way above. I've also been supplementing with methylcobalamin (B12) since I was low before diagnosis in 2010, and now I'm fine. I'm surprised I ever requested a folate level, but I did, in 2019. Result 9.4 ng/mL (range >3.0).    
    • Captain173
      Do you have any links that show studies where NCGS and/or infections have caused high Ttg iga levels.  I've yet to see anything that truly supports this. Everything I've read says the high levels are celiac specific.
    • gailc
      I get coughing and choking from canola oil. I cough up stuff.  Symptom is like bronchitis.  I have gluten intolerance, maybe celiac.  the choking persists for about a week, it simulates a cold.  I got it from the gluten free menu at Outback too, that time I got cramps for 25 hours. the cramps start about 20 minutes after finishing eating.  
    • Wheatwacked
      Many of the symptoms, there are over 200, associated with celiac disease and NCGS are vitamin and mineral deficiencies caused by small intestine damage in the case of celiac disease and food avoidance and the poor nutrittion of the Modern American Diet (MAD) I used to turn the heat on even at 78 degrees.  The 600 mcg of Liquid Iodine helped.  Also good for hair, nails, skin and brain fog.  Another good thing for brain fog is phosphatyl choline.  It is essentil for acetylcholine- a brain chemical. I have familial hyperlipdemia and instead of a statin I got a prescription for Nicotinic Acid, 2000 mg a day.  I was already taking 500 mg a day and was really surprised when my HDL when up to  44 and I began sleeping better and my legs and back are getting more flexible.  In addition after the first few doses of itchiness I get a warm fuzzy feeling Raising your vitamin D is crucial.  Low vitamin D allows the immune system to run amuck. intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe).  Look at Thiamin deficiency. consistently ran hot, was always cranking the a/c, to someone who wears a down vest.  Any combination of deficiencies in B1, B2, B3, B5, choline and Iodine can cause this.  Likely all of them. After a lifetime of mouthbreathing GFD cleared my sinuses.  Post nasal drip is my first symptom of cross contamination nowaday.  
    • Wheatwacked
      If you mean continueing on Gluten Free my answer is yes.  She showed significant improvement in her behavior and that translates to a happy family.  Do get her tested as sooon as you can.  You might want to investigate genetic testing for Celiac Disease.  Children recover more quickly than adults.  It took my son about 6 months on Nutramigen before going to regular food, gluten free.  Blood tests are not always accurate in very young children. You may be advised to see a gastroenterologist instead of relying on blood tests results. Logic: She is better off gluten than before.  Wheat flour has no nutritional value and has an omega 6: omega 3 ratio of 22:1.  Our bodies do better at 3:1.  Omega 6 causes inflammation. When my son was diagnosed, back in 1976, his doctor recommended my wife and I also go gluten free.  We declined and lived to regret it.  I started GFD at 63 and have spent the last 10 years undoing the damage, some of my symptons went all the way back to my childhood and things I lived with all my life got better.
×
×
  • Create New...