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Exhaustion Worse After gluten-free
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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?

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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!  

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

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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  :)

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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:

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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!! 

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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.

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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

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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/

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

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

 

D

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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.

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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

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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!! 

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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.

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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...

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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.

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    • Hi lolobaggins, Yes, it is not unusual to have symptoms that come and go after going gluten-free.  Edema (swelling) can also be a symptom of an allergic reaction.  Fatigue is not fun but remember your body is trying to heal a major organ, your gut.  So some rest might be a good idea.  The immune system response is going to keep going for several weeks to several months.  Each little bit of gluten kicks the immune response off again and extends the healing time.  So it's helpful to be very careful with your diet. Meats, vegetable, and nuts are good foods to eat at the beginning.  And whole foods rather than processed foods.  Dairy is often a problem until the villi are healed.  After a few weeks if things are going well you can try to add one new food a week and see how things go.  But take it slow and easy.  The fewer foods/ingredients we are eating the easier it is to identify problem foods. Welcome to the forum!
    • Welcome to the club that you never wanted to join!  (I plagiarized that from someone else here but can't recall who so I can't give credit to them.) Anyway, there is a steep learning curve to being gluten free.  It takes time to learn to read labels.  It takes time to heal (like months to YEARS).  Symptoms can wax or wane.  You just have to keep moving forward.  Give yourself time to heal and do not worry about the gym right now.  It will come back later, I promise (from a gal who cycles, swims, and runs).   Read our Newbie 101 section pinned at the top of the "Coping" section.  It contains valuable tips about cross contamination and hidden sources of gluten.  Read, read, read, the internet from reliable sources (not crazy bloggers).   You will feel better soon.  
    • Ha!    That happens to me all the time!!!!!  It drives me crazy!
    • "Accidentally marked them soy free".  Are you kidding?  That's fraud!  Consumer Reports just issued a huge report this month on supplements.   Yes, everyone thinks they are all "natural" and therefore safe.  Doctors and nurses recommend them all the time, but they can do a lot of damage.  Anyone can start making them in their bathroom and there's literally no regulation.   Geez, it is safer to buy food products (no gluten ingredients listed) from companies like Kraft and ConAgra because they are regulated more!  http://www.consumerreports.org/cro/magazine/2016/09/index.htm What about the probiotics?  Columbia University tested about 20 of them and found that over half had gluten in them.....enough to make celiacs  remain sick. https://www.sciencedaily.com/releases/2015/05/150515083232.htm Think twice about taking supplements.  Make sure you really medically need supplements.  I prefer certified gluten-free if I need to take them and I take nothing right now because all my labs are okay!  You have been on the gluten-free bandwagon for many years (member here for years).  Your doctors should be looking at other things that might be making you sick still.  Something is wrong!   That's my two cents!    
    • Hi Schlafentzug, The usual diagnosis process is a blood test for antibodies first, followed up by an endoscopy to check for gut damage.  You have to eat gluten for 12 weeks before the blood tests. It sounds like your brother may have celiac disease also.  His gut lining villi were damaged by something, and villi flattening  is a common celiac disease indicator.  Being shorter than other family members is also a common indicator. The excessive gas is probably from bad digestion.  The gut damage interferes with proper digestion and some enzymes aren't made.  Lactase is made by the villi in the gut. You should definitely get tested and before going gluten-free IMHO.
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