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Symptoms…looking for solidarity


Nogluten4thisgirl

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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.  

 


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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.

 

 

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    • Scott Adams
      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • trents
      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
    • Jack Common
      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
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