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

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
      131,914
    • Most Online (within 30 mins)
      7,748

    ChrisMary
    Newest Member
    ChrisMary
    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

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.