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):

Please Read - No Celiacs Can Have Soy!

srokie

By srokie
in Food Intolerance & Leaky Gut

Recommended Posts

sandsurfgirl Collaborator
sandsurfgirl
Posted

Yes, and by no means am I saying that my doctor is the all-knowing being who could never be wrong.

But don't you guys think that - in the event she is right - I would be quite negligent as a fellow celiac not to share information that could make you all feel better?

I think it's wise to share information when it is proven to be valid. That means lengthy studies on varied populations and all of that scientific jazz. People come up with theories about all sorts of diseases all the time and maybe they look at a few things and say "Eureka! I've found the answer." It may or may not be. You have to be skeptical and careful about what information you take as the truth because ALL doctors (well most anyway) are confused about celiac or at least they don't agree with one another.

Testing is unreliable and if there's anything ALL celiacs know it's that celiacs are not ALL alike. There is such a wide range of symptoms, or lack of symptoms, levels of sensitivity from being able to cheat with no consequences to getting deathly ill from glutened shampoo.

You just cannot make a sweeping statement like that and expect us to all say "Okay, well out with the soy then!" I would bet all the bun-less hamburgers I will ever eat in the future that this research isn't going to turn up to be what this PhD (not medical doctor) is telling people that it is. There is too much anecdotal evidence to the contrary, let alone scientific evidence.

I think your heart is in the right place and it's wonderful that you want to share but people just aren't going to get up in arms about this and they are going to question it especially when it's coming from someone who isn't even a medical doctor. You can get a PhD in all sorts of things but that doesn't make you a "doctor" who treats patients and practices medicine. A PhD student doesn't do residency and work in a hospital, etc. Plus what is her PhD in anyway?

And since so many doctors have misdiagnosed us over the years or been totally clueless about what to do once they do diagnose us, we're all going to be skeptical of doctors period.

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

Celiac.com Sponsor (A8-M):


  • Replies 103
  • Created
  • Last Reply
sandsurfgirl Collaborator
sandsurfgirl
Posted

Well now I feel like a dork. I didn't realize this was such an old thread. I saw it at the top and replied.

:lol::lol::lol:

Lisa Mentor
Lisa
Posted

Well now I feel like a dork. I didn't realize this was such an old thread. I saw it at the top and replied.

:lol::lol::lol:

Not to worry! This is one or our "Young and the Restless" threads...they never die. Hopefully, they just fade away. :blink::D

Might be time to close this one. B)

psawyer Proficient
psawyer
Posted

This topic's "best before" date was about three years ago. I am closing it.

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...