Symptoms…looking for solidarity

[Nogluten4thisgirl]

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.  

 

[knitty kitty]

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 October 25 by knitty kitty
Typo correction

[Nogluten4thisgirl]

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]

@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]

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.