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

Exhaustion Worse After gluten-free


moosemalibu

Recommended Posts

moosemalibu Collaborator

I am newly diagnosed - last week in fact. And I am more exhausted this week, especially the past 2 days than any other time prior. I don't know if that means resources are going to healing but I'm just physically exhausted. Maybe my emotional distress is manifesting physically too. I don't know. Anyone else experience this?


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



Celiac.com Sponsor (A8-M):



notme Experienced

yes, ma'am, i sure did - you sound like you are going through withdrawal.  the good news is:  you must be doing a good job of keeping yourself gluten-free, so your body is 'missing' it.  for me, it felt like the flu.  it knocked me on my butt (right into the bed lolz) for a couple of weeks but then it went away.  i started feeling a little better each day.  take it easy on yourself (and i think healing makes you tired, too, and i still get a little tired when i eat dairy - it's like it takes all my body's energy to digest it sometimes - it's a little better all the time, though!)  get a bunch of rest, drink alot of water, i took very hot showers and they seemed to help.  mostly rest, though, and try not to be so cranky - it's the gluten making it's last stand lolz  - hang in there!  

moosemalibu Collaborator

Wow - withdrawel symptoms. That I never expected. Is there anything else that I should expect? Thanksf or validating me!

notme Experienced

yeah, it was kind of a shocker to me too!  i would expect you will go through grieving, too - that was a surprise, too.  it *is* a big life change (the bell you can't un-ring, so to speak.... :(  ) so, it's normal to mourn your 'old' lifestyle/to miss your comfort foods/to get used to the *never* word....  but, as you go along, and merge your 'old' life with your 'new' one, it's pretty good.  i thought i had one foot in the grave when i was dx'd, now i feel younger than i have felt in a very long while.  and it keeps getting better (i had lots of damage, i would guess i'm STILL healing) i continue to see improvements.  even things one would never associate with the dreaded gluten   <_<   take it one day at a time -on this forum, you're among (probably) the biggest group of people in one place who understand that it's not 'just a diet'   :ph34r: rest up, you'll feel better soon :)  

 

ps - i can now do 2 (TWO) things in one day - i never believed i would ever have the energy to go to, say, a ball game and a picnic in the same day.  i used to couldn't  :)

notme Experienced

oh, yeah, and if you drink alcohol, be aware that your tolerance may change.  i am more of a 'cheap date' now, lolz, and if i drink chardonnay, i better have bail $$$   :lol:

w8in4dave Community Regular

OMG Yea I am 3 months in and I had some gluten free Mac and cheese yesterday .... It hit me like a rock!! Right away !! , , then this morning Ohhh geeze!! Not good! , and boom a feather could of hit me and I'd of been knocked down .. It took me a while to figure it out but dang gone it!! I will try to remember not to eat gluten free mac and cheese for what ever time they say.. Thats all I did and boom hit me like a rick! Arrrrggg!! Still paying for it ! pffttt!! 

kareng Grand Master

Just a thought. People who are healing something tend to need more sleep and maybe a little extra food. Combined with the fact that you may not be eating the same nutrients, fiber, etc.....you have a reason to be tired.


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



Celiac.com Sponsor (A8-M):



answerseeker Enthusiast

OMG Yea I am 3 months in and I had some gluten free Mac and cheese yesterday .... It hit me like a rock!! Right away !! , , then this morning Ohhh geeze!! Not good! , and boom a feather could of hit me and I'd of been knocked down .. It took me a while to figure it out but dang gone it!! I will try to remember not to eat gluten free mac and cheese for what ever time they say.. Thats all I did and boom hit me like a rick! Arrrrggg!! Still paying for it ! pffttt!!

What does the gluten-free Mac n cheese do to you? Is it the cheese or the fact that its processed? Month 1 for me was just whole foods but then I started introducing gluten-free packaged foods and bam! Almost right back where I was except the pain. My husband noticed I am more "sluggish" after eating gluten-free foods and I get bloated too

w8in4dave Community Regular

What does the gluten-free Mac n cheese do to you? Is it the cheese or the fact that its processed? Month 1 for me was just whole foods but then I started introducing gluten-free packaged foods and bam! Almost right back where I was except the pain. My husband noticed I am more "sluggish" after eating gluten-free foods and I get bloated too

I think it is because of the lactose , I can only guess , Other than that I have noooo Idea!! I have been so very careful and checking everything. I have had some Gluten free noodles, but this is the 1st time I have had a Gluten free Mac and cheese product It was by "Annes" I believe. had a lil bunny on it. But I have been Lactose Free and Gluten Free for 3 months and it didn't dawn on me till today what it "MIGHT" of been ... because alot of Celiacs need to be Lactose free . for a while anyway? Not sure how long/

answerseeker Enthusiast

Yeah I haven't been as careful with the lactose as I should be. It's so hard to give up so much

1desperateladysaved Proficient

Give yourself some downtime whenever you can.  Your body really is working hard.

 

D

moosemalibu Collaborator

I probably need to be taking in more calories than I am currently right now. I take in roughly 1400-1600 calories and I strength train 5x/week for an hour to hour and a half. I cut the cardio completely as I am too exhausted to do it.  I'm probably doing too much. But I enjoy the training aspect too much to completely cut it for now. I don't lift heavy anymore, just light to moderate weight and high reps. 

 

I agree with everyone about the lactose intolerance - it's probably the worst part of this whole adaptation for me. I love cottage cheese and greek yogurt. I cut it out but I miss it terribly.

moosemalibu Collaborator

oh, yeah, and if you drink alcohol, be aware that your tolerance may change.  i am more of a 'cheap date' now, lolz, and if i drink chardonnay, i better have bail $$$   :lol:

I definitely don't have a tolerance for alcohol at all just because I've abstained for almost a year as it is. Adding this to it I think I'd have a sip and be just silly. haha

w8in4dave Community Regular

Wow!! You work out alot!! I don't know how you have the energy!! I try and go for a walk every day. Sometimes it is exhausting!! I cannot  even think about working out!! I am glad someone has some energy!! But really I don't know how you do it!! 

moosemalibu Collaborator

Yeah... I love it. I would love to compete in body building so I have that added enthusiasm that most people don't have. But I have felt the energy just ooze out of me and this week especially has been hard. My workouts last an hour max and I am just spent.

eers03 Explorer

You need more calories.  If you are strength training and only consuming 1400-1600 calories, that is most likely not adequate.  If you are Celiac, you are not absorbing everything you need from a nutrient perspective already, then you burn the rest up on exercise...  Additionally, have you drastically reduced your carb intake?  Hopefully not if you are active.  You'll need those carbs.  I inadvertently cut my carbs drastically.  When I went gluten free, I mistakenly was eating an Atkins-esque diet without meaning to.  I didn't know the right way to cut out gluten and ended up not getting carbs.  I eventually started experiencing Ketosis.  Bad stuff.  I dropped to 137 lbs and I'm 5'11.

 

I started eating 2800-3000 calories per day and stopped working out altogether to get my weight up.  7-8 months later, I'm checking in at 172 and have finally started biking and went for a run last night.  Anyhow, when my caloric intake was down along with my weight, I was tired, anxious, and depressed.

 

You may not be in the same boat as I was but you are working out much harder than I was and you aren't getting enough calories in my opinion but then again, I don't know what your fitness/health goals are...

moosemalibu Collaborator

Thanks for your reply Eers. I eat about 120-160 grams of carbs per day so I know I'm not going to the ketotic route. I figured I was probably too low on the calorie scale as everything is just going right through me with the D and all. I posed this question to my doctor via online message and she has not gotten back to me yet. I don't want to drastically increase my calories at once (plus I'm not that hungry - hitting my goal for the day is difficult right now). I'll likely increase it by 100 calories or so a week and get to a happy place. I don't think I'd ever give up working out. It's therapy for me.

 

My goal is to compete in bodybuilding at some point so I'd like not to gain a lot right now as I'm trying to do a cut but I realize that may not be feasible right now in my life. Sigh.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,316
    • Most Online (within 30 mins)
      7,748

    Steffieg
    Newest Member
    Steffieg
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Canker sores can definitely be frustrating, especially when you're already managing a strict gluten-free lifestyle and have been diagnosed with celiac disease for so long. While these painful mouth ulcers aren’t exclusive to celiac disease, they can be linked to nutritional deficiencies—particularly of iron, folate, or vitamin B12 (as @trents mentioned )—which are common in people with celiac, even those who are very careful with their diet. Ongoing fatigue and aches might also suggest that your body isn’t fully absorbing nutrients or that there’s some underlying inflammation. It could be helpful to get bloodwork done to check for these deficiencies, and possibly even a full nutritional panel. Sometimes, new sensitivities or hidden sources of gluten or additives like sodium lauryl sulfate (common in toothpaste) can trigger symptoms like canker sores too. Since your reactions are so severe and you're highly vigilant, it might also be worth considering whether any other autoimmune conditions could be involved, as they can develop over time and overlap with celiac. Consulting with your doctor or a celiac-informed dietitian may help pinpoint the cause and bring relief.
    • knitty kitty
      @Dora77, You shouldn't worry about getting glutened through your skin.  You would have to touch a gluten infested doorknob and then put your hand in your mouth.   I'd be more concerned with your mom's heating up gluten bread in the oven and boiling gluten noodles.  These methods cause particles of gluten to become airborne which would then enter your nose and be swallowed, going into your digestive tract.  I have to avoid the bakery aisle at the grocery store for this reason.  An M95 mask helps. If you get nutritional deficiencies corrected, your immune system will calm down and be less reactive to gluten expose.  Vitamin D helps regulate the immune system.  Thiamine and Niacin help make digestive enzymes which would help digest any accidental gluten exposure.  Thiamine helps Mast cells not to release histamine, an inflammatory agent released as part of the reaction to gluten, and also a neurotransmitter that causes alertness and anxiety, and the flight or fight response.  Pyridoxine will help improve the OCD.  Remember your brain is part of the body.  Vitamin deficiencies affect your brain and mental health as well as the rest of your body.  
    • Jacki Espo
      I do not have evidence other than anecdotal but I am certain when I have gotten these it's the result of eating gluten (back when I did).  I don't get them now that I don't eat gluten. 
    • Dora77
      What really bothers me is if worrying about getting cc‘d from touching the same door knob as others touched is valid. Seems like an extremely unlikely way to get glutened but i read people saying that.    If thats true then theres realistically zero chance i dont get cc‘d in a non gluten-free household unless i Cook Everything myself and wash my hands multiple times in between and store all of my stuff separately
    • trents
      Welcome to the forum, @Mrs. Cedrone! Among the various causes for canker sores, are "Nutritional problems like too little vitamin B12, zinc, folic acid, or iron" https://www.webmd.com/oral-health/canker-sores Could you be deficient on something?
×
×
  • Create New...