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

How Do You Normally Feel?


sharkmom

Recommended Posts

sharkmom Apprentice

I have been gluten-free for a few weeks now. I have been careful not to have any cc, but Im pretty new to this. At the same time finding out about my food allergies, my thryoid was on the low range of normal and my medication was readjusted. Just came off of 4 days D, 1 day no bm, yesterday and today loose stool. I have days, like today, being tired and push myself to be active. Other days I feel just ok. I just had a B12 shot, but didnt notice a difference. I hate feeling sick and I dont know if it is a gluten reaction or something else. I want to feel good again and have the energy I had 6 months ago. Im wondering if Ill ever return to feeling good again and what I need to do to get there. I guess I should have named this: Is the way I feel common? I should add that I feel more fatigued since going gluten-free.


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



Celiac.com Sponsor (A8-M):



tunibell Rookie

I've been gluten-free for 5 weeks now (diagnosed via biopsy last month) and I totally hear you - I feel more tired now than I did when I was happily munching on Autumn Wheat cereal. I actually felt systemically great when I was diagnosed; what drove me to the doctors (all four of them) was just a tight, dull stomach ache and a mild burning sensation in my abdomen.

I, too, am still having symptoms, although they are improving. I got hit with a nasty cold last week, and that was definitely a setback. I think this just takes time. I personally found all the "in-24-hours-I-felt-better-than-I-had-in-my-whole-life" stories depressing - that definitely has not been my experience!

foodiegurl Collaborator
I was happily munching on Autumn Wheat cereal. I actually felt systemically great when I was diagnosed;

Just had to chime in...I loved that cereal, my favorite!

I also felt great when diagnosed, and now have to be very careful about what I eat, or my tummy reacts :(

sharkmom Apprentice
I've been gluten-free for 5 weeks now (diagnosed via biopsy last month) and I totally hear you - I feel more tired now than I did when I was happily munching on Autumn Wheat cereal. I actually felt systemically great when I was diagnosed; what drove me to the doctors (all four of them) was just a tight, dull stomach ache and a mild burning sensation in my abdomen.

I, too, am still having symptoms, although they are improving. I got hit with a nasty cold last week, and that was definitely a setback. I think this just takes time. I personally found all the "in-24-hours-I-felt-better-than-I-had-in-my-whole-life" stories depressing - that definitely has not been my experience!

Well, at least I know I am not crazy. My family can't understand how I seemed fine and now "all of a sudden" I am sick. This whole thing came out of no where. I just went to a preventive/holistic MD and he did a few tests and all of a sudden a bunch of food allergies. I just had a celiac panel done and waiting results. This has been very depressing and wish it was just a bad dream and I would wake up!

linda7276 Newbie
I have been gluten-free for a few weeks now. I have been careful not to have any cc, but Im pretty new to this. At the same time finding out about my food allergies, my thryoid was on the low range of normal and my medication was readjusted. Just came off of 4 days D, 1 day no bm, yesterday and today loose stool. I have days, like today, being tired and push myself to be active. Other days I feel just ok. I just had a B12 shot, but didnt notice a difference. I hate feeling sick and I dont know if it is a gluten reaction or something else. I want to feel good again and have the energy I had 6 months ago. Im wondering if Ill ever return to feeling good again and what I need to do to get there. I guess I should have named this: Is the way I feel common? I should add that I feel more fatigued since going gluten-free.

It took 5 full weeks for me to recover from a week of gluten. I was well and then convinced myself that gluten was not my problem (before my testing)...will never do that again. Everyone is different but please feel good knowing that every thing you are doing to improve your health adds up and it does take time. Sometimes when we start to feel good we forget what was hurting or bothering us...then one day you realize oh yeah, I don't have that bone pain anymore, or that fluid retention, or that profound and crippling fatigue...you will notice things and you will get better, hang in there...most of us have been sick for all of our lives with this, and it takes more than a few weeks for all of the repair that has to take place. Just keep taking care of yourself everyday. Rest and don't give up, you're doing the right thing. I had to quit soy, and dairy as well...you may have to do that too. Gluten is the worst culprit but it may not be the only one, I hope you start to feel better sooner than later...:)

Jonbo Apprentice
Well, at least I know I am not crazy. My family can't understand how I seemed fine and now "all of a sudden" I am sick. This whole thing came out of no where. I just went to a preventive/holistic MD and he did a few tests and all of a sudden a bunch of food allergies. I just had a celiac panel done and waiting results. This has been very depressing and wish it was just a bad dream and I would wake up!

I was the same way. I was relatively healthy (some previous surgeries, one involving untwisting my small intestine years before this came on), and then all of a sudden one day in December it starting hitting me and by late December I was going through hell everyday with my stomach. No one else here saw it coming either since I've been normal enough since birth food wise without this condition.

Since diagnosis in April, my normal for now (compared to before dx) is no abdominal pain but still mild distended stomach while it's adjusting. Eventually I won't have to see this every day but compared to the severe pain of before, I'll take what I deal with now.

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. - 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.

    2. - 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.

    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. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams 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
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.