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

New To This! Post-Gluten Recovery Time And Fatigue

eeka

Recommended Posts

eeka Newbie
eeka
Posted

Hey! So I'm kind of new to this, but have been lurking for a while, and have a couple of questions...

 

For the past couple of years I'd been having issues with bloating and D (sorry), tiredness, anxiety and brain-fog, all of which got increasingly bad during last spring (to the point where I was feeling sick when eating, feeling shaky, uncoordinated and, a lot of the time, almost 'drunk' with brain-fog and lightheadedness).
I went gluten-free about 2 months ago after lots of internet-browsing, and so far the bloating/D have disappeared, the anxiety and brain-fog have decreased, and I feel better within myself than I have for years!

 

However, I'm still feeling very tired, and 'weird'. Yesterday and the day before, eg, I had just enough energy to slump around the house all day! Today I had a bit more energy (enough to go for a short cycle) but I'm still feeling quite light-headed, and it's still nowhere near the level of energy I should have. The whole summer has pretty much been a bit like this - I'm due to go back to uni in a couple of weeks, and am feeling a bit apprehensive about having enough energy to cope.

 

I'm aware I've eaten gluten at least once (max. two times) since going gluten-free, which was definitely a bit of set-back. I haven't been diagnosed (and am really unwilling to go back to gluten for 6 weeks to take the test), so it's difficult to talk about with the doctor. I'm also a little worried because I have a friend who was recently diagnosed with Chronic Fatigue, and it's slightly disconcerting how similar my symptoms are to her's before she got really sick!

So, I guess what I'm asking is;

 

- Which symptoms did you find cleared up quickly, and which stuck around for a while?

 

- How long did it take you to feel any difference from going gluten-free, and how long did it take you to feel completely better?

 

- Is there any difference (in your experience/opinion) between Coeliac and Gluten Intolerance, in relation to the above two questions?

 

- Any other tips/info/inside knowledge for a gluten-free newbie?

 

Thanks guys! This forum's pretty much been my only source of real info so far, so I'm already pretty grateful.

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

are you getting cross contaminated somewhere?

eeka Newbie
eeka
Posted
  • Author

Idk, it's always possible, I guess. My parents both eat gluten. But I've tried to eliminate it all - I can't think what it'd be...

kareng Grand Master
kareng
Posted

Idk, it's always possible, I guess. My parents both eat gluten. But I've tried to eliminate it all - I can't think what it'd be...

Sounds like you live with gluten eaters. You have your own Pb, jelly, butter tub, mayo, etc that no one is allowed to double dip their gluten knife in? You use a separate toaster, if you use a toaster? A gluten-free only colander for rinsing fruits, veggies, beans, gluten-free pasta?

You might want to get your thyroid tested? Maybe see if you are anemic? Low B12? Low Vitamin D? Those are all things you could have tested, even off of gluten.

Edited to add the link to The Newbie thread

https://www.celiac.com/forums/topic/91878-newbie-info-101/

eeka Newbie
eeka
Posted
  • Author

I've been avoiding the toaster and trying to use non-contaminated butter/gluten-free chopping board, but didn't think about the colander! Blood-tests were done at the start of the summer and all fine, though I've just started taking multivits, probiotics and omega 3 (today), so hopefully that'll help a bit. Thanks kareng :)

I was just wondering, is it normal for people to take several months to recover (inc. a glutening or two)?

kareng Grand Master
kareng
Posted

I've been avoiding the toaster and trying to use non-contaminated butter/gluten-free chopping board, but didn't think about the colander! Blood-tests were done at the start of the summer and all fine, though I've just started taking multivits, probiotics and omega 3 (today), so hopefully that'll help a bit. Thanks kareng :)

I was just wondering, is it normal for people to take several months to recover (inc. a glutening or two)?

It's normal for it to take a year or two, even without any accidental gluten. Even if your gut is healed, it can take a long time to get things back in balance and running smoothly. And you will need to figure out if your new diet gives you enough fiber, or too much fiber, too much fat, etc. all things that have to get balanced out.

eeka Newbie
eeka
Posted
  • Author

Man, ok. Thanks, I guess! Time to do some patient figuring-out...

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

Celiac.com Sponsor (A8-M):


niese Explorer
niese
Posted

Might want to think about giving up dairy, at first alot of people can't do dairy, I know I can't been dairy free for 4 months now.  I drink Silk Almond Milk and use it in all my baking as well.  

bartfull Rising Star
bartfull
Posted

Your friend with "chronic fatigue" just might have celiac too. If you're really good friends, maybe you can ask her to try a gluten-free diet for a few weeks and see if she notices any improvement.

eeka Newbie
eeka
Posted
  • Author

No dairy, got it. Am feeling a fair bit better today, so hopefully that's a good sign!
@bartfull, yeah, that had crossed my mind. She does seem to be improving in the way that people with actual chronic fatigue are predicted to, though, so I'm wary of mentioning it to her (and potentially disrupting her recovery, or invalidating her).

notme Experienced
notme
Posted

You might want to get your thyroid tested? Maybe see if you are anemic? Low B12? Low Vitamin D? Those are all things you could have tested, even off of gluten.

i agree with karen on this - there are a number of other things that you should be tested for to rule out any other potential cause, just to be safe.  if it's your thyroid, for example, you would do well on a gluten-free diet but there are supplements you doctor can add as well.  i got tested for 8 million things (all neg, but no worry from doubt that it *could* be something else) and i didn't go back on gluten ever again.  but i was sure i didn't have something else that would mimic symptoms and be potentially dangerous if it was left untreated.  nope.  just dumb gluten......;)

 

good luck!

eeka Newbie
eeka
Posted
  • Author

Aye, I may do that if it doesn't clear up. As I said, I did get a pretty full blood-test done at the beginning of the summer (vitamins, thyroid, blood sugar - the Dr referred to it as a 'full MOT') and I'm fairly sure everything came back fine. I'll defs double-check though, to see exactly what they did and didn't test for. I've also just started taking a multivitamin, so if it's any sort of deficiency it should clear up pretty soon.

Thanks, notme!

Archived

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

Go to topic listing

  • 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. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    2. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    3. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

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

      My only proof

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

      still struggling with cravings

      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, ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,876
    • Most Online (within 30 mins)
      7,748
    Karin Majdecki
    Newest Member
    Karin Majdecki
    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
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      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
      My only proof

      By Jmartes71 · Posted

      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
      still struggling with cravings

      By Scott Adams · Posted

      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:    
×
×
  • 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.