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

Gf But Fatigued..


solarbound27

Recommended Posts

solarbound27 Newbie

My wife has been gluten free for a little over a month now. For the last couple of weeks she has been feeling a little sick after eating, as well as extremely fatigued in the afternoon and evenings. While she has been free of gluten, she has not cut out dairy. She is taking a pretty good multi vitamin 3 times a day from a distributor/manufacture called True Hope out of Canada. I know her iron levels have been low in the past and I assume that this still might be the case. Anyway, we are both very optimistic that the remaining symptoms (fatigue and the mild sickness) are simply part of the healing process. Is there anyone else who has, or has had similar symptoms throughout their transition from a gluten to non-gluten diet? We simply want to know if it


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

I didn't have any trouble eating but I was fatigued for months and months. It was probably 10-12 months before I fewlt "normal" again. Probably 4-5 months before I could do anything but watch TV after a day of work.

richard

flagbabyds Collaborator

THE Healing process takes a long time and if you cut dairy out of her diet for a while it couldn't really hurt that much. See if she feels better without dairy and then if she does keep it out of her diet but if she doesn't and it is a while later go back to your GI doc and see what they have to say she could have other food allergies or another autoimmune disorder.

burdee Enthusiast

I've been gluten free 11 weeks and dairy free 5 days. I felt a little more energetic when I went gluten-free (possibly because less pain made me feel more like moving around). However, I really noticed a big resurgence of energy when I cut out dairy. Even when I don't get enough sleep (5-6 hours, rather than my usual 8 hours), my MIND is still awake. I don't feel foggy and overwhelmed like I did when I was consuming dairy. I recently received my Enterolab results which said I had gluten AND casein antibodies, so I will keep avoiding both. Less pain seems to give me more physical energy, but no fogginess makes me mentally alert and FEEL energetic all over. :D

BURDEE

Guest gillian502

I felt worse during my first 4 months gluten-free than at any other time in my life. I'm surprised I was even able to hang in there and stay on this diet, but I was very positive for celiac disease and knew I had to try to stay gluten-free to save my own life. After about 4 months, temporarily cutting out dairy, and adding more protein, I felt a little better. After 10 months gluten-free, I still can't say I feel normal on this diet, but I'm better than I was at this time last year, and that's at least something!

ezrab12 Newbie

Hi All,

Can you please let me know what the enterolab test is. I have had the blood tests gor Gluten levels but is that what it is called? or is this something different. I have been on a gluten-free diet since April. My doc took blood tests at the ensd of July and he said everything had dropped by half and positives were negative now but i still feel like crap with numbness and tingling in my arms , hands, legs, feet and sometimes the glands under my ears swell and are painful. If there is another blood test I can take let me know and what is Casein.

Thannks,

Ezrab12

Guest jhmom

Enterolab is a lab run by Dr. Fine, which has Celiac too. It is a stool panel test which is more sensitive than blood and a more accurate way of testing. You can visit their website at Open Original Shared Link

I hope you find the answers you are looking for :)


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



Celiac.com Sponsor (A8-M):



dana-g Newbie

Ezrab 12, are these new symptoms, or the same ones you had when you were eating gluten? Did they just not go away? Casein is a protein found in milk. Are you having any gastro symptoms? If so, you may want to avoid dairy while your gut is healing; often, celiacs find that helpful for a while. Are you the one who also posted about the possible corn allergy, too? Because if you are, you seem to be having enough stuff going on that you may want to keep a food diary. Write down what you eat, when, and any symptoms and when they occur. It is not unusual to "feel like crap" after just a few gluten-free months, unfortunately. I found that it helped to keep my diet as simple as possible at first. Not very exciting, but not as many things to react to, either. Hope you get some relief soon, and keep posting questions--the people here are very helpful and somebody is bound to come up with something useful for you. Take care!

dana-g Newbie

Ezrab (I like that name!) I just found that corn allergy post and it wasn't you, but you may want to do the diary anyway--it really helps give you some clarity. I remember feeling really fuzzy in the head when I was getting the gluten out! Good luck.

tabbiea Newbie

I've been diagnosed for over 5 years. My major sumptom prior to diagnosis was fatigue--not bowel trouble-- but intractable debilitating fatigue. Three days on the gluten-free diet and I work up. It was amazing. Now I have CFS in addition to Celiac Disease but I did have a couple years where I was "normal". Stay on the diet. Make sure you ARE on the diet. Wheat and gluten are everywhere! You must be extremely careful about your diet.

Archived

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

  • 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. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • 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.