Jump to content

  • 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):

Veteran Celiacs

jerseyangel

Recommended Posts

jerseyangel Proficient
jerseyangel
Posted

As discussed on another thread, we thought it would be interesting to hear any tips, stories, or encouragement from the "veteran celiacs" here. Really--anything you can offer would be great :)

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

Celiac.com Sponsor (A8-M):


DingoGirl Enthusiast
DingoGirl
Posted
As discussed on another thread, we thought it would be interesting to hear any tips, stories, or encouragement from the "veteran celiacs" here. Really--anything you can offer would be great :)

Aaagh! You read my mind!! :)

MallysMama Explorer
MallysMama
Posted

I don't feel old enough to be considered a "vetern celiac" - I am only 22 - but I was diagnosed with Celiac Sprue when I was 18 months old (when it was very rare and they didn't know a lot about it). I, of course, don't remember details of what I went through, but my mom wrote down the "story" for me and the nightmare they went through. I saw a lot of doctors and was tested for everything from leukemia to ghiardia before my parents finally found a doctor who knew about Celiac and recognized my symptoms. Pictures from that time show me looking like the ehtiopian babies you see in National Geographic - my stomach was huge and my arms and legs were rail thin. They told me that there were so many days where they thought that day would be my last. To my knowledge, after finally recovering, I haven't seen another doctor about this disease since.

I'm not sure how much help I can be on this site - because I'm not very good at eating what I should and staying away from what I shouldn't. I, lately, have been having a lot of questions of my own - since there are so many new findings on Celiac since I last saw a doctor about it. Since I "cheat" on my diet all the time, there are lots of days where I don't feel any effects from it - so I wonder if I've gained a tolerance for it or if it went away? Or am I constantly hurting myself, even if I don't feel it, beyond repair?

I would love to hear all the "newbies" stories of discovering they have Celiac (and the veterans stories as well)....because I have distanced myself from the disease in the past and I'd like to "reconnect" now. :)

aikiducky Apprentice
aikiducky
Posted

It's seems very common that people are able to tolerate some gluten in their teens and twenties, and then get sick again in their thirties. When you're young, your body is still quick about repairing itself.

Pauliina

jerseyangel Proficient
jerseyangel
Posted
  • Author

I experienced that--I had a lot of stomach problems when I was a child. I even fainted at church once when I was around 10 or so. But my teen years were great--I don't remember any problems then. It wasn't until the C-section birth of my 2nd. son when I was 29 that I begen to have stomach problems and anemia again.

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. knitty kitty
      - knitty kitty replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

      @glucel, There's a strong correlation between thiamine deficiency, hypoxia, and insomnia. Thiamine is needed to help red blood cells carry oxygen. In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

      Thanks. Not a big thing, particularly because most likely it is "true" but not yet demonstrated.
    3. glucel
      - glucel replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

      Thanks for the thoughtful comment. You are right that the study’s main conclusion was cautious: the researchers found that inherited antibody-gene variants significantly shape the naïve B-cell receptor repertoire, including usage of some gene segments involved in celiac-related antibody responses, but they did not find strong evidence that polymorphisms in...
    5. knitty kitty
      - knitty kitty replied to Bogger's topic in Related Issues & Disorders
      6

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

      I have osteoporosis and have crushed three vertebrae. I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health). I tried Fosomax, but it tore up my insides. I prefer the supplements. I feel better and my bones feel stronger. References...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,003
    • Most Online (within 30 mins)
      10,442
    michelinagiggles
    Newest Member
    michelinagiggles
    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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      iron digestibility

      By knitty kitty · Posted

      @glucel,  There's a strong correlation between thiamine deficiency, hypoxia, and insomnia.  Thiamine is needed to help red blood cells carry oxygen.  In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular events.  Curiously, thiamine deficiency is correlated with excessive daytime sleepiness and oversleeping.   I found a combination of Tryptophan, Pyridoxine B 6, magnesium, and L-theanine works very well for inducing sleep.  Sometimes, I add Passion Flower Extract and/or Sweet Melissa.  There's no side effects the next morning with Passion Flower, it just induces sleepiness.  Sweet Melissa is groovy, and has anti-inflammatory effects on the digestive system.   I prefer to take 250 mg Benfotiamine and 100 mg Thiamine TTFD in the mornings and another dose of Benfotiamine at lunch.  I try not to take any thiamine after four p.m. because it keeps my brain so energized and wanting to think... Oh, I do take a combination of another form of thiamine (sulbutiamine), Pyridoxine and Cobalamine for a pain reliever sometimes, but I can sleep after taking that.  But thiamine does help regulate circadian rhythm.   Make sure you're getting Omega Three fats! They'll help you satisfy that late night carb craving with fewer carbs.  Flaxseed oil, olive oil, sunflower seed oil.  Nuts and nut butters, like walnuts and cashews, are good, too, if you can tolerate them.    Try taking the 100mg thiamine HCl before your aerobics and see if there's a difference.  Sweet dreams! References: Network Pharmacology Analysis of the Potential Pharmacological Mechanism of a Sleep Cocktail. ......(Skip to Section Four) https://pmc.ncbi.nlm.nih.gov/articles/PMC11201840/ Effects of Melissa officinalis Phytosome on Sleep Quality: Results of a Prospective, Double-Blind, Placebo-Controlled, and Cross-Over Study https://pubmed.ncbi.nlm.nih.gov/39683592/
    • glucel
      iron digestibility

      By glucel · Posted

      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

      By knitty kitty · Posted

      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      Coeliac And Cardio Vascular Disease

      By knitty kitty · Posted

      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
×
×
  • Create New...