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

How Do You Deal With The Fatigue?


loxleynew

Recommended Posts

loxleynew Apprentice

So out of all my symptoms after going gluten free, most of them are gone! However the one that remains is the fatigue. It's only really bad in the morning like 8-12 in the morning. Maybe it's because i'm getting gluten from somewhere but I doubt it since all my other symptoms are gone...

What do you all do for your fatigue? Btw it has been almost 4 months on the diet.


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

I try to plow through it, as much as possible. Sometimes I can't and I spend the weekend on the couch.

You just do as much as you can, without trashing yourself, and rest when that seems like the best plan.

Welda Johnson Newbie

Hi,

I agree with Jestgar! I watch my 6 year old grandson go endlessly, then he hits the bed at night and is asleep within 3 minutes. He's full-throttle or asleep. I sometimes forget that I am quite a few years older than he is, and that even though I stick to my diet faithfully, exercise almost every day, and have vastly inproved physical, mental, emotional and spiritual peace, I must recharge my batteries if I am ever to keep up with him or with living life. I reach my limit and, pow, I have to just sit down and do nothing for awhile. My body is so good to remind me of my need for rest and relaxation. "Go ahead, you deserve it," I seem to hear.

So to you I say, "Go ahead, you deserve it!"

ohsotired Enthusiast

I've been gluten-free since last August, and I still have fatigue, albeit not as bad as before and immediately after going gluten-free. I work full time, and I usually spend my first day off of the week doing nothing but lounging/napping/taking it easy, and then any errands/housework/etc on the second day off. Some weeks, I have to have both days as down time. If I don't, I am completely worthless the rest of the week. <_<

lizajane Rookie

I would love to find a way to end the fatigue!! I was diagnosed in mid March, so I have only been gluten free since March 13. Not only am I totally fatigued from Celiac and hypothyroidism and from being sick with upper respiratory garbage 2 weeks out of every 4... I have a 4 year old who wakes me up every single night and then between 5 and 6am.

I have started all sorts of vitamins and have heard a lot about vitamin B. I just had all my levels checked (haven't heard back on blood test results) so I am not sure if I am doing enough. But you may want to get your D and B checked out. Lacking both can make you tired!

I totally understand what it feels like to have tons to do, WANT to do it all and just not be able to wrap your mind around making it happen. With a 4 year old and a 6 year old, I don't get to just take it easy and lie down when I need to.

Hang in there. and forgive my whining!! (my thyroid meds got off and i am cranky!)

Lost Scribe Newbie

I'm new to the forum and I'm really glad to see this post! I've been gluten free since September and the fatigue has still not gone away. I was afraid it was just me.

lizard00 Enthusiast

It took me a good six months before I could get through a day without a nap. A few more months before I wasn't worn out at the end of the day.

If you need to sleep, and you can, do it. Your body is healing itself, which is a huge undertaking. It needs rest. I could push myself through when I needed to, but I always eventually hit the wall. I just stopped fighting it unnecessarily. It seems endless, but it took a while to get sick, and we can't heal overnight.

Look into your vitamin D levels and b12. I noticed the biggest improvement when I started supplementing vit d.


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



Celiac.com Sponsor (A8-M):



loxleynew Apprentice

Thanks for the replies! Well I wish I could just go take a nap or sleep but I work full time and don't have that luxury. On the week-ends I do and I look forward to saturdays.

Strange you ask about my Vitamin D levels and B levels. My B levels were normal but my Vitamin D was 16. That was 4 months ago and for 2 months I did take supplements. Should I go get a new prescription for it? Does it correct itself or will I be on vit D supplement forever? I know getting out in the sun helps but I think I just don't retain Vitamin d that well.

lizard00 Enthusiast

Let me make sure I have this: You've been gluten-free for 4 months, the first 2 of those you took a D supplement? (Just wanted to make sure I understood you correctly)

If it were me, I would have it rechecked. It's possible you were not absorbing the D even in mega doses if you had just been diagnosed/started the diet. D is absorbed in the small intestine... so if your intestines aren't healed to absorb it... a supplement isn't going to do a whole lot. Could be why you are not retaining it.

Ideally, once you get your absorption back on track, your D stores will build back up, and you shouldn't have to mega dose. It's something you have to have continually, whether through supplement or the sun because your body only makes it with the sun, and there are only a few foods that contain vitamin D naturally, (salmon, shrimp, eggs) and others like dairy products and some cereals are fortified with it.

seashellp Newbie

Hi All,

Fairly new to this forum and spend most of my time reading it not posting. Was diagnosed coeliac last August and have crohn's disease too for about last 10 years.

I have been gluten free for most part, unless I make a mistake or someone else does and I'm tired most of the time.

I take folic acid, calcium and multi vitamins which contain most vitamin and minerals.

Just got to see my dietician last week and she said could take along time to heal which I understand but I still manage to sit down and be out cold within seconds. I could take up to 3 or 4 naps a day and still feel tired.

My other symptoms are gradually dissapearing thankfully and I'm hoping one day soon I can stay awake for the whole day!

This place is a godsend and so glad I found it, it helps if you dont feel so alone.

Jenny (AZ via TX) Enthusiast

Yes, the fatigue was horrible. I would take a 3 hour nap during the day and then sleep at least 10 hours during the night. It's been just over a year and things are much better. I still have some days that I have to take a nap, but it's not every day or even every week anymore.

Have you had your ferritin level checked? That can cause a lot of fatigue. Mine was 8 when I was dx'd.

Also, have you had your thyroid checked? I found out that I am hypothyroid which can cause fatigue as well.

Just a couple of things to think about. I hope this helps.

Ed-G Newbie

It's been rather strange with me. I am famous for suddenly falling asleep at the strangest moments, and yet I have frequent bouts of insomnia. When I am overcome with fatigue it seems that I am suddenly assaulted by it, including a nice headache that only closing my eyes will alleve. Caffeine and enforced activity can delay it somewhat, only pushing back the hour of reckoning when I'm finally of my feet and my body just shuts down on me.

Ed in MD

Ken70 Apprentice

I haven't posted here in a while but thought I might chime in. If you have only eliminated gluten then there are a host of other things that may be contributing to your fatigue. Some have been mentioned. I would suggest candida as a possibility. It's hard to test for it but I know how much it effects me. I would recommend a great book I just finished reading called the UltraMind Solution. It addresses all of the disorders that come from our diet/lifestyle and how they specifically effect the brain (this is where your fatigue most likely comes from not lack of nutrients in your cells although that may contribute).

My only real advice is to try the Paleo Diet, The Specific Carbohydrate Diet, The Body Ecology Diet or any of those others might suggest. Gluten free alone is rarely enough. These diets will deal with many of the underlying issues that going gluten free won't.

Good Luck

samcarter Contributor

At first, when I cut out gluten, the fatigue was much, much better. I could wake up at a reasonable time in the morning, rather than sleeping in until my husband woke me before going to work. You know, so somebody would be awake with the kids and all. :huh:

Then I noticed I'd get drowsy now and then, the fatigue would hit me before the kids' bedtime. I have since traced it to dairy. Seriously, if I get a bit of dairy it acts on me just like gluten. When I gave up gluten I did amp up my dairy intake--probably out of a feeling of being deprived, and I did love cheese! But I feel so much better when I don't eat it. So maybe check your dairy intake, see if cutting out dairy will help.

loxleynew Apprentice

I might try one of those diets. I did cut out 70% of dairy. I still eat cheese sometimes.

I do have hashimotos thyroid which swings my thyroid back and forth but not on meds because half the time my levels are normal so my doctor wants me to wait to treat it. Maybe that is what is causing the fatigue. My ferritin levels I believe were mid-high but my iron levels were lower I think. Kinda weird.

I guess it just takes time. My weight still hasn't increased so I guess i'm still not absorbing all the nutrients yet. Does anyone have good supplements to recommend? For multi vitamin and for digestive enzymes?

Gfresh404 Enthusiast

It's good to see I'm not alone.. Does anyone know how long it usually takes for the fatigue to fully disappear? I have about 1 - 2 years, can anyone confirm this?

I would really like to know since I'm about to be a sophomore in college and am seriously considering taking a year off since I want to enjoy college and not just "get through it."

eleep Enthusiast

After about two years of being gluten-free, I still had a lot of fatigue and started seeing an acupuncturist around every other week. Within a couple of months, I had a lot more energy and I have also found that my reactions to cross-contamination are less extreme. Chinese medicine works on different principles, but basically I had what's called spleen qi deficiency -- which was largely caused by having untreated celiac for years. It does seem like my digestion overall is much better as well. So you might consider that if you're looking for ways to encourage the healing process.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,192
    • Most Online (within 30 mins)
      7,748

    Beatle Jane
    Newest Member
    Beatle Jane
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • WednesdayAddams13
      Hello,   I contacted the makers of Alpine Original Spiced Cider Drink Mix and they sent me this email.....   Subject: [EXTERNAL] Fw: Ref. ID:1335211 Alpine Original Spiced Cider Drink Mix.               On Friday, December 6, 2024, 1:04 PM, Consumer <baking@continentalmills.com> wrote: December 06, 2024   Dear Janie, Thank you for taking the time to contact us regarding our Alpine Original Spiced Cider Drink Mix. We appreciate your interest and are happy to provide you with additional information. This product does not contain gluten. However, it is not manufactured in a gluten free facility. If I can be of further help, please contact me at 1 (800) 457-7744, weekdays 7:00 a.m. to 4:00 p.m. (PT), or visit www.alpinecider.com and select "Contact Us." Sincerely, Kristin Kristin Consumer Relations Specialist Ref # 1335211   I hope this helps everyone.  I am currently looking for a spiced hot apple cider drink and have yet to find one that is not made in a plant that manufactures other gluten products.  It's so frustrating. 
    • trents
      @Rogol72, dermatitis herpetiformis occurs in a minority of celiac patients and if the OP hasn't developed it yet I doubt it will show up in the future. I think it unwise to use a scare tactic that probably won't materialize in the OP's experience. It has a good chance of backfiring and having the opposite effect.
    • Rogol72
      Hi @trents, You're correct. The OP mentioned fatigue and vitamin deficiencies as the only symptoms at the time of diagnosis. Since the family are not taking him/her seriously and find them to be too fussy, I suggested showing them pictures of dermatitis herpetiformis as one of the consequences of not taking the gluten-free diet seriously ... would make life easier for him/her, and the family might begin to take his/her strict gluten-free diet more seriously. A picture says a thousand words and the shock factor of dermatitis herpetiformis blisters might have the desired effect. The OP did say ... "How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read?".  @sillyyak52, It might also help mentioning to your family that Coeliac Disease is genetic and runs in families. Any one of them could develop it in the future if they have the HLA DQ 2.5 gene. Here's a Mayo Clinic study calling for screening of family members of Coeliacs ... https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-celiac-disease-screening-for-family-members/ https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-calls-for-screening-of-family-members-of-celiac-disease-patients/ I got glutened a few months ago because I missed the may contains statement on a tub of red pesto. It was my own fault but it happens.
    • peg
      Thank you, Scott!  This is just what I needed.  Appreciate your site very much and all of your time and energy that goes into it! Kind Regards, Peg
    • Hopeful1950
      Oh yes.  I would never recommend taking it for an extended period of time.  When 70% of my body was covered in blistering itchy sores, an amazing doctor prescribed it diagnostically because I was unwilling to do a gluten challenge after already going strictly gluten-free in desperation after 10 years of suffering and being poo pooed by dermatologist after dermatologist. The fact that it stopped the itch and mostly cleared the rash after about 2 months was diagnostic for him.  I stopped it and have remained strictly gluten-free with very few flares since that time (over 10 years ago).  So the fact that it cleared the rash was diagnostic for me.     
×
×
  • Create New...