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

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,062
    • Most Online (within 30 mins)
      7,748
    Lexxi Hartless
    Newest Member
    Lexxi Hartless
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Blood results

      By trents · Posted

      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Oral thrush question

      By knitty kitty · Posted

      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Nutrient deficiencies despite normal MARSH and strict gluten-free diet

      By Scott Adams · Posted

      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Blood results

      By knitty kitty · Posted

      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      Blood results

      By Heatherisle · Posted

      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
×
×
  • Create New...