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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

    2. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

    4. - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

    5. - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748

    GR82BNTX
    Newest Member
    GR82BNTX
    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

    • Colleen H
      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.