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

Extreme Fatigue


c2737487

Recommended Posts

c2737487 Newbie

Hello Forum! This my first post. I was diagnosed with Celiac Sprue in February of 2004. I went to a nutritionist who basically told me what I couldn't eat. I basically taught myself how to eat. I have been feeling better however I have one symptom that I cannot shake - AND it seems the be getting worse. I am extremely fatigued. I actually believe I have developed narcolepsy! I fall asleep instantly anywhere, anytime. I am actually afraid to drive more that a couple of miles at a time because of it.

Another thing is that I cannot stay asleep at night at all. However, I could sleep all day if given the chance. Does anyone else experience this? I am confused, my memory is shot and I have little mini panic attacks throughout the day. I used to be a social butterfly - never able to sit still and waste a moment! Now, (even when I was in Jamaica over Christmas!) I'd rather sleep or just sit around. As a result, my workout regimen has suffered and I've put on a little extra weight. I've always been a healthy eater so it really is just from exhaustion and being completely sedentary. I just feel like - well - crap!

I would like to go back to my doctor (who is my general practitioner) and ask for more help on this but what do you think I should ask for? Tests I mean?

Thanks so much in advance!


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



Celiac.com Sponsor (A8-M):



2kids4me Contributor

Your thyroid should be checked and B12 levels, and iron ...although my B 12 levels were considered normal the only thing that got me back living again was B 12 injections. There are tablets and under the tongue supplements as well.

The damnged gut cannot absorb many nutrients and often celiacs are affected by low iron, B12 etc.

Hypothyroidism can accompany celaic as well.

Hope they find the source of your fatigue, it is no fun at all!

Sandy

gadgetgirl Newbie

I have noticed that since I gave up gluten (and dairy, soy, yeast, almonds, brazil nuts, legumes....) that I really have to be careful not to get too many simple carbs at one time otherwise I will get extremely fatigued and won't be able to keep my eyes open while driving or trying to study.

When I was eating gluten, I ate mainly whole wheat flours which helped slow down the rise in blood sugar. Many of the gluten-free replacements I at first tried gave me too much sugar and simple carbs.

Now I eat mainly a whole foods diet: fresh fruit (no juice or dried fruit), lots of veggies (easy on the starchy ones), some brown rice which I always try to pair with a protein source, lean chicken, turkey & salmon. Some nuts (walnuts & cashews) and Tahini.

Hope this helps.

Queen Serenity Newbie

Hi and welcome,

It sounds like you need to have your thyroid checked immediately. You have been living with celiac's for 2 years now, so your body should have already healed. I have hypothyroidism, but I wasn't diagnoesd with this until six years into celiac's. Please make an appointment for bloodwork. You will feel much better in the long run if you have the levels checked.

Vicki

G.F. for 11 years

NoGluGirl Contributor
Hello Forum! This my first post. I was diagnosed with Celiac Sprue in February of 2004. I went to a nutritionist who basically told me what I couldn't eat. I basically taught myself how to eat. I have been feeling better however I have one symptom that I cannot shake - AND it seems the be getting worse. I am extremely fatigued. I actually believe I have developed narcolepsy! I fall asleep instantly anywhere, anytime. I am actually afraid to drive more that a couple of miles at a time because of it.

Another thing is that I cannot stay asleep at night at all. However, I could sleep all day if given the chance. Does anyone else experience this? I am confused, my memory is shot and I have little mini panic attacks throughout the day. I used to be a social butterfly - never able to sit still and waste a moment! Now, (even when I was in Jamaica over Christmas!) I'd rather sleep or just sit around. As a result, my workout regimen has suffered and I've put on a little extra weight. I've always been a healthy eater so it really is just from exhaustion and being completely sedentary. I just feel like - well - crap!

I would like to go back to my doctor (who is my general practitioner) and ask for more help on this but what do you think I should ask for? Tests I mean?

Thanks so much in advance!

Dear capshert,

Welcome to the forum! I would agree and say your thyroid is to blame. I myself have had difficulty with it. It was awful, no matter how much I did not take in calorie - wise, or how much I exercised, nothing helped me lose weight. You sound like your case is more severe than mine. You could have a rare form of Thyroid disease called Hashimoto's Thyroiditis. Google it and see if it matches up with any other symptoms you may have. I tried medication for the slow thyroid, and it was intolerable with the side effects. I was not able to sleep at night, I had tremors, heart palpitations, and was a complete wreck. After two weeks, I decided there had to be a better way. The meds did not help me lose weight either. Natural supplements did. Rosemary Leaf Extract (Made by Solaray) and Ashwaghanda taken once a day, plus 2 - 3 Tablespoons of Virgin Coconut Oil per day really helped.

There are also certain foods you should avoid because they slow your thyroid down more, like peanuts, peaches, broccoli, refined sugar, soy extracts (soy sauce, any processed food with soy lecithin in it) and refined carbs like white rice. Helpful additions to stimulate thyroid function like brown rice, buckwheat, one serving of fish or beans daily, unrefined oils (avoid transfats) and walking at least ten minutes a day really improved my thyroid. If it is Hashimoto's, you will likely need medication, but dietary changes help slow thyroids pep up again.

Sincerely,

NoGluGirl

katrinamaria Explorer

hello & welcome!

i can relate to you right now, as i've been gluten free for a little over a year and have felt really fatigued in the past few months. although not as bad as you described, i do nod off in class, have no energy to just get up, and i know exactly what you mean by workouts suffering. (althought i can't sleep at night... :) weird) anyway, i guess my advice is to schedule an appt with your doctor. mine is next week and i hope she can give me some direction. my guess is that it is either something that will be found in the bloodwork, by seeing a nutritionist, or maybe because i've had an abnormally large amount of stress/tough times in my life in the past year. so that is one thing i don't think anyone has mentioned yet... don't forget to consider your stress levels/mental health! best wishes---

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - sc'Que? commented on Scott Adams's article in Product Labeling Regulations
      1

      Global Experts Recommend Gluten Reference Dose: What It Means for Celiac Safety (+Video)

    2. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      What's your daily meals? Protein bars?

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

      Labs ? Awaiting in person follow up with my GI

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

      Labs ? Awaiting in person follow up with my GI

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,170
    • Most Online (within 30 mins)
      7,748

    Charlotta Herte
    Newest Member
    Charlotta Herte
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • xxnonamexx
      What are your daily meals? Guilty pleasure snacks? Protein bars? I feel when looking for gluten free foods they are filled with sugar cholesterol. Looking for healthy gluten-free protein bars. Something to fill since sometimes I feel like not to eat anything. Especially if on vacation and unsure of cross contamination I figure go with a salad and protein bar to fill and play it safe.
    • trents
      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
    • Seabeemee
      Thanks for your reply Trents…most appreciated.  I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population?  Also,  I found what you said about NCGS very interesting and I appreciate you mentioning that.  I’ve worked hard to research and advocate for myself with my Hematologist and now with a new GI, since my bowel surgery and to maintain my Vitamin B12 health concurrent with keeping my levels of Iron in the optimal range. I’ve been tested for SIBO (do not have it), biopsy showed negative for HPylori, and have had Fecal studies done (nothing showed up) and I understand how a loss of a large amount of bowel could be highly impacting re: SIBO, malabsorption and motility issues. So I’ve managed pretty well diet and elimination-wise until just recently. That said, this new problem with extreme bloating, distention and upper girth, NAFLD just occured over the last 4 months so it is new for me and I thought celiac might be a possible issue. I’ll probably just continue on in this less gluten/carbs seem to be better for me and see how reintroducing certain foods go.  Thanks again.    
    • xxnonamexx
      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
×
×
  • 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.