Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Symptoms…looking for solidarity


Nogluten4thisgirl

Recommended Posts

Nogluten4thisgirl Newbie

Hello all, 

I’m in the process of testing for celiac and I can’t wait to hear back if I have ancestry dna for celiac.  For a while, I’ve been suffering with so many symptoms, but I never connected it to celiac or NSGS.  All have gotten better with gluten-free diet.  
Here are my symptoms and maybe someone would know if they are more related to NCGS or Celiac.  
Chronic constipation, brain fog, memory issues, brain feels like it’s on fire sometimes, adhd, depression, anxiety, dry mouth, mouth sores, skin lesions/sores that went away with gluten-free diet, dry eyes, joint pain and cracking, chronic fatigue, graphical tongue, breast tenderness, vitamin B12 and D deficiencies, gas that would clear a room, leg and ankle feel like they are heavy or retaining water/painful, acne, brittle nails, night sweats and horrible heart palpitations.  

 


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master
(edited)

Welcome to the forum, @Nogluten4thisgirl!

Those symptoms are related to nutritional deficiencies.  Because the intestines get damaged in Celiac Disease, they cannot absorb sufficient vitamins and minerals.   NCGS doesn't damage the intestines, but it may be a precursor to celiac disease and damage hasn't started yet.    

There's eight essential B vitamins, Vitamin C, and four fat soluble vitamins, including Vitamin D.  There's a dozen minerals.  celiac disease affects the absorption of all of them, not just one or two.  They all work together, so supplementing just one or two may not improve the malnutrition.  

Have you been tested for deficiencies beyond Vitamin D and B12?  Have you discussed supplementing with vitamins and minerals while healing with your doctor and nutritionist?

Chronic constipation....magnesium and Thiamine

brain fog, memory issues, brain feels like it’s on fire sometimes, adhd, depression, anxiety....Thiamine Vitamin B 1and the B vitamins

mouth sores, graphical tongue....B12 and the other B s

skin lesions/sores that went away with gluten-free diet, acne...Niacin

dry eyes, joint pain and cracking...Vitamin A and omega three fats

chronic fatigue...Thiamine and the B s

leg and ankle feel like they are heavy or retaining water/painful... Thiamine, magnesium, potassium and the Bs

night sweats....Vitamin D deficiency

horrible heart palpitations....Thiamine

gas that would clear a room....possibly Small Intestinal Bacterial Overgrowth SIBO

I was in very poor health due to nutritional deficiencies while on my journey to diagnosis.  I've experienced all of these myself.  More details in my blog.  I studied nutrition before earning a degree in microbiology at university.  I'm concerned about your numerous symptoms pointing to Thiamine insufficiency.  The brain/mental health symptoms get serious rapidly.  Please talk to your doctor soon about "Wet Beriberi".  Your doctor should be able to give an IV of high dose Thiamine.  Over the counter Thiamine in the form called Benfotiamine will help as well.

Thiamine deficiency: a commonly unrecognised but easily treatable condition

https://pmc.ncbi.nlm.nih.gov/articles/PMC10398819/

Thiamine deficiency disorders: a clinical perspective

https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

Edited by knitty kitty
Typo correction
Nogluten4thisgirl Newbie

I don’t think I have gotten a full work up for vitamin deficiencies, especially Thiamine.  My levels have been very low, and even with gluten-free diet and vitamin supplementation, my B12 was on the lower end.  It’s improved a tad, so hopefully over time and sticking with gluten-free it will get even better.  
 

So celiac would cause some of these symptoms or just vitamin deficiency? 

knitty kitty Grand Master

@Nogluten4thisgirl,

It's been my experience these symptoms are related to vitamin deficiencies caused by poor absorption due to intestinal damage and inflammation caused by Celiac Disease.  They are inextricably linked.

How long have you been taking B12 and Vitamin D supplements?  What changes have you seen in your levels?

There's eight B vitamins.  They all work together.  B12 needs Folate B9, Pyridoxine B6, Riboflavin B2, and Thiamine B1, as well as copper.  Taking just B12 can mask a Folate deficiency.  

I learned about vitamins by studying nutrition, but I learned about how vitamins function inside the body by studying microbiology.  I have had personal experience with malnutrition.  My doctors didn't recognize the nutritional deficiency symptoms.  Doctors, out of seven years of medical education, are only required twenty hours of nutritional education.  They don't recognize the vitamin deficiency symptoms when they are taught vitamin deficiencies don't occur outside of starvation in refugee camps or third world countries.  

My doctors prescribed pharmaceuticals to cover the vitamin deficiency symptoms I had, but they did not investigate why the symptoms occurred in the first place.  The medications just made things worse.  So ill, I could feel myself dying, I started grasping at straws.  I started supplementing with vitamins and began feeling better.  I took Thiamine (Benfotiamine) and felt improvement within the hour.  

The B vitamins are water soluble, easily lost in urine, as well as with diarrhea and constipation.  B vitamins cannot be stored long inside the body, so we need to consume them every day.  Thiamine can only be stored for two to three weeks, but can become depleted in as little as three days if there's a high metabolic demand, like an illness, emotional trauma or physical exercise.  

Blood levels are not accurate measurements of how much of a vitamin is stored within cells, where the vitamins actually function.  Blood levels can reflect how much of a vitamin was consumed during the previous twenty-four to forty-eight hours and is waiting to be absorbed.  If there's not sufficient vitamins stored within cells, the cell cannot function properly and dies.  The brain will order cells to release stored vitamins into the bloodstream to sustain important organs like the brain and heart.  

The brain uses as much Thiamine just thinking as muscles do running a marathon.  Thiamine deficiency symptoms affect brain function (brain fog, memory problems, ADHD, depression, emotional lability, anxiety, panic attacks, irritability), and heart function (heart palpitations, heart failure, edema of the lower legs).  

The B vitamins are water soluble, safe and nontoxic.  If you don't need it, the body easily excretes it in urine.  The best way to see if you're low in B vitamins is to take them and look for health improvements.  With thiamine, improvement is seen quickly, within an hour, but the others may take a few weeks for improvement to be seen.  

Do talk to your doctor before supplementing.  Do discuss thiamine deficiency symptoms and wet beriberi.  Because the B vitamins are safe even in high doses, there's no harm in trying supplementing with Benfotiamine, a B Complex supplement, and magnesium.  

Scott Adams Grand Master

I just want to make sure that you've been eating gluten daily, 2-4 slices of wheat bread, for 6-8 weeks leading up to your blood panel for celiac disease:

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to NCalvo822's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly Diagnosed

    2. - knitty kitty replied to Rebeccaj's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      symptoms.

    3. - Rebeccaj replied to Rebeccaj's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      symptoms.

    4. - knitty kitty replied to CeliacPI's topic in Related Issues & Disorders
      8

      Lymphocytic Colitis with Celiac

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

      Finding gluten free ingredients


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,508
    • Most Online (within 30 mins)
      7,748

    Bringmesunshine
    Newest Member
    Bringmesunshine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @NCalvo822, Blood tests for Celiac Disease test for antibodies our bodies make in response to gluten exposure.  These Tg IgA 2 antibodies mistakenly attack our own bodies, causing problems in organs and tissues other than just the digestive tract.  Joints can ache, thyroid problems or the pancreas can develop.  Ataxia is just one of over two hundred symptoms of Celiac Disease. Some people with Celiac Disease also make tTg IgA 6 antibodies in response to gluten exposure.  The tTg IgA 6 antibodies attack the brain, causing ataxia.  These tTg IgA 6 antibodies are also found in people with Parkinson's disease, though they may not have Celiac Disease.  First degree relatives (parents, siblings, children) of those diagnosed with Celiac should be tested as well.  Celiac is genetic.  Your mom and sister should be tested for Celiac, too!   Definitely a good idea to keep to a gluten free diet.  
    • knitty kitty
      @Rebeccaj,  When you smell toast or pasta cooking, that means that particles of that food are floating around in the air.  Airborne gluten can then be inhaled and swallowed, meaning the food particles get into your digestive tract.   If you're careful to avoid gluten and are still having symptoms, those symptoms could be caused by vitamin deficiencies.  
    • Rebeccaj
      ok thanks for your advice. But my question was what happens when someone you know in a house is cooking pasta or toast that's flour  Airbourne without eating.?
    • knitty kitty
      Do discuss this recent article with your doctors.  Thiamine Vitamin B 1 is important to intestinal health.  Thiamine deficiency can occur in Celiac Disease due to malabsorption.  Supplementing with a B Complex, Benfotiamine, and Vitamin D can help symptoms.   Thiamine deficiency aggravates experimental colitis in mice by promoting glycolytic reprogramming in macrophages https://pubmed.ncbi.nlm.nih.gov/39890689/#:~:text=Our mechanistic study revealed that,necessary to protect against colitis. "Conclusion and implications: Our study provides evidence linking thiamine deficiency with proinflammatory macrophage activation and colitis aggravation, suggesting that monitoring thiamine status and adjusting thiamine intake is necessary to protect against colitis."
    • knitty kitty
      Do keep in mind that most gluten free flours are not enriched nor fortified with vitamins and minerals like gluten containing flours are required to do.   Consuming a diet high in carbohydrates without sufficient B vitamins to digest and process them into energy can lead to High Calorie Malnutrition and weight gain. Deficiency symptoms of B vitamins resemble gastrointestinal symptoms when after eating gluten.  Gastrointestinal Beriberi is a form of Thiamine deficiency.   Do talk to your doctors about supplementing with essential nutrients while on the gluten free diet, especially if you're consuming processed foods.
×
×
  • Create New...