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

I still don't feel much different.

Fbmb

By Fbmb
in Coping with Celiac Disease

Recommended Posts

Fbmb Rising Star
Fbmb
Posted

So I've been gluten free for 6 months. I gave it up the day of my endoscopy and never looked back. I was a fairly silent Celiac. My blood work was always normal (never anemic, malnourished), I didn't have all the horrible symptoms that others do. I think I caught it early and that those things were definitely coming. Since going gluten-free I notice that my belly is better. I still have days where it's not great, but in the last month I've noticed that it's consistently pretty good. I don't hardly ever get stomach aches. I've lost 16 lbs and I'm never bloated. Those things are good. But, aside from that, I don't feel much different than I did before. I'm still tired a lot. But I have two kids under 4 and I run a non-profit. I have horrible anxiety and that's only increased since finding out about my Celiac (it's health anxiety and it freaked me out big time that I have an AI disorder). I feel like my complexion looks the same (never had an issue with that). 

I just read stories on here that talk about how the brain fog lifted quickly, or how people don't feel tired anymore, etc. I'm still a zombie sometimes. Has anyone else has this experience? Maybe my body was doing such a good job compensating for my Celiac that I wasn't really very symptomatic to begin with - and that the tiredness I feel isn't due to gluten. 

Oh, FYI, I had a full thyroid panel done in December and it was all normal. 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Some of take longer to heal.  Cut yourself some slack.  A busy working mother with small children is both rewarding and taxing!  

You know what  I asked for on Mother's Day?  No cooking, food prep, or cleaning.  I do not want to go out (just too busy of a day for most restaurants  and my fav gluten-free restaurants are a state away).  I just want to take care of myself and not others.   I guess I have had a history of ditching my responsibilities on Mother's Day.  My SIL would watch the baby at her mother's house (with my hubby) and I would ride my bike to the beach, order a coffee and read!!!!).  I celebrated Mother's Day on Saturday with my Mom.  When my daughter was old enough to want to make me breakfast, I opted for lunch after my bike ride and coffee.  

Hang in there!  

Archived

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

Go to topic listing

  • 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. lil-oly
      - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye.
    2. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thanks so much!
    3. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      I have osteopenia and have cracked three vertebrae. Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins. Blood tests don't reveal the amount of vitamins stored inside cells. The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four...
    4. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the...
    5. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      @JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,156
    • Most Online (within 30 mins)
      7,748
    mike101020
    Newest Member
    mike101020
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • lil-oly
      Gluten tester

      By lil-oly · Posted

      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.