Weird celiac symptoms

[DMulder47]

I’m new to being gluten-free , but there are a few things that I’m going through right now I can’t explain. Like high heart rate and unsettling palpitations of my heart, to a weird fuzzy and often times nauseous sensation down along my throat upper palate to mid chest. What’s going on ? And have anyone else experienced this. 

[trents]

Welcome to the forum, @DMulder47!

How long do you guess you suffered from celiac disease before getting diagnosed and going gluten free?

Many of the medical problem spinoffs from celiac disease are related to vitamin and mineral deficiencies. This is the part that most doctors don't tell you about.

The constant inflammation in the small bowel caused by undiagnosed celiac disease damages the villous lining of the small bowel. This is the section of the digestive track where the absorption of all nutrition happens from the food we eat. The villous lining is made up of millions and millions of microscopic finger-like projections. For those with celiac disease, the inflammation caused by the ingestion of gluten destroys these villi over time and greatly reduces the surface area for nutrient absorption. This is why those who have suffered from long term, undiagnosed celiac disease often develop anemia, osteoporosis, suffer hair loss, tooth decay, ataxia and neurological problems, "brain fog," etc. 

The symptoms you describe sound to me like they very well could be vitamin and mineral deficiency related. My suggestion is that you invest in some gluten free high potency, targeted vitamin and mineral supplements. Taking an adult multivitamin will not be enough. Here's what we routinely recommend on this forum:

• sublingual B12
• high potency B-complex
• 5-10,000 IU of D3
• 400mg of magnesium glycinate or magnesium citrate (not magnesium oxide)
• zinc

Costco is an excellent place to shop for vitamin and mineral supplements. Their Kirkland Signature, Nature Made and Nature's Bounty are good products and typically gluten free. If they are gluten free it will state so on the packaging or bottle.

[Scott Adams]

Celiac disease can trigger similar symptoms, and I also had symptoms similar to what you described that led to panic attacks and trips to the emergency room, but be sure to talk to your doctor about your symptoms, as they could also be unrelated to celiac disease, and caused by another condition. 

[Wheatwacked]

According to Harvard Health Publishing and the Food and Drug Administration, potassium and magnesium are particularly important for cardiovascular health because they help maintain normal heart rhythm. Both of these nutrients, along with sodium and vitamin D, also help regulate blood pressure.

"Dietary surveys consistently show that people in the United States consume less potassium than recommended, which is why the 2015–2020 Dietary Guidelines for Americans identifies potassium as a nutrient of public health concern. The U.S. Food and Drug Administration developed DVs to help consumers compare the nutrient contents of foods and dietary supplements within the context of a total diet. The DV for potassium is 4,700 mg for adults and children age 4 years and older. FDA has ruled that some oral drug products that contain potassium chloride and provide more than 99 mg potassium are not safe because they have been associated with small-bowel lesions. Second, FDA requires some potassium salts containing more than 99 mg potassium per tablet to be labeled with a warning about the reports of small-bowel lesions "  Potassium Fact Sheet for Health Professionals

Potassium-sparing diuretics: Uses, common brands, and safety info  If you are one BP meds.

The typical intake of US adults is 2300 mg a day.  Malabsorption and diarrhea from Celiac Disease can cause even lower levels.

 

[McNish]

On 2/13/2024 at 12:51 AM, DMulder47 said:

I’m new to being gluten-free , but there are a few things that I’m going through right now I can’t explain. Like high heart rate and unsettling palpitations of my heart, to a weird fuzzy and often times nauseous sensation down along my throat upper palate to mid chest. What’s going on ? And have anyone else experienced this. 

Just my own experience.  I just went through a similar issue a few months ago.   I recommend seeing a Cardiologist or at least a visit to your PCP and explain what's going on.   I was in denial of my symptoms, honestly, because I was in complete fear - I suffer with extreme medical anxiety.  It came to a point, that I was more worried what could be wrong than avoiding the issue any longer.   After an array of Cardiac testing, Heart Monitor, Echo, Stress Test & CT Angiogram it was determined that I don't retain Potassium and needed a pretty significant script.   It helped tremendously but I still have occasional palpitations.  There are so many issues that might not be related to Celiac, I highly suggest seeking medical advice from a professional.   Good Luck & hop you keep us updated.  

pal

[DMulder47]

On 2/13/2024 at 9:49 AM, trents said:

Welcome to the forum, @DMulder47!

How long do you guess you suffered from celiac disease before getting diagnosed and going gluten free?

Many of the medical problem spinoffs from celiac disease are related to vitamin and mineral deficiencies. This is the part that most doctors don't tell you about.

The constant inflammation in the small bowel caused by undiagnosed celiac disease damages the villous lining of the small bowel. This is the section of the digestive track where the absorption of all nutrition happens from the food we eat. The villous lining is made up of millions and millions of microscopic finger-like projections. For those with celiac disease, the inflammation caused by the ingestion of gluten destroys these villi over time and greatly reduces the surface area for nutrient absorption. This is why those who have suffered from long term, undiagnosed celiac disease often develop anemia, osteoporosis, suffer hair loss, tooth decay, ataxia and neurological problems, "brain fog," etc. 

The symptoms you describe sound to me like they very well could be vitamin and mineral deficiency related. My suggestion is that you invest in some gluten free high potency, targeted vitamin and mineral supplements. Taking an adult multivitamin will not be enough. Here's what we routinely recommend on this forum:

• sublingual B12
• high potency B-complex
• 5-10,000 IU of D3
• 400mg of magnesium glycinate or magnesium citrate (not magnesium oxide)
• zinc

Costco is an excellent place to shop for vitamin and mineral supplements. Their Kirkland Signature, Nature Made and Nature's Bounty are good products and typically gluten free. If they are gluten free it will state so on the packaging or bottle.

I think i have suffered for Celiacs since I was very young. I was born necrotizingenter Colitis that resulted in the removal of 75% of my intestinal track. For many years all the symptoms of celiacs were thought to be form the Short GI,  i was constantly running to the bathroom after i ate as a child and up until recently ( post diagnoses) going to the bathroom was painful and embarrassing. It was normal for me to go to the restroom and then run right back in two to three minutes or lest of using it. The smell and the noises that accompanied it became fodder for peers and adults that didn’t understand what what Short bowel syndrome entailed or even in my case the case.  It took a very tentative nurse partitioner in Colorado to have me tested for Celiacs. It changed my world.  You would think that Gi specialist would look for it in there patients that are having symptoms that look like Crohn’s or irritable bowel syndrome.

Every thing you have described is exactly almost to a T what i have been going through all my life with a few variations. I have been very fortunate that  i have not had issues with hair loss, tooth decay, or osteoporosis, but i have had issues with “brain Fog, ADHD , unexplainable fatigue, migraines and hemorrhoids.

Thank you so much for your insight and recommendations this really does help me understand. The celiac’s is far more than just another GI problem, it’s a global auto immune disease that is rooted in the Gastrological tract. 

[Heather Fisher]

In the process of getting a definitive diagnosis. My symptoms: brain fog, achy joints, CONSTIPATION, vit D deficiency, high lipids (no matter how healthy my diet), B12 wnl, not anemic, and the most irritating symptom-fatigue (even with enough sleep). I had blood test IgA is low but the gluten sensitive parameters are negative. PCP said low IgA can cause a false negative for celiac disease. 
 

can anyone relate or have suggestions or insight?

[trents]

Heather Fisher, you need to get DGP-IGA tests and DGP-IGG blood tests done since your total IGA is low. Or, go straight to the endoscopy/biopsy to check for damage to the small bowel villous lining.

Edited February 28 by trents

[DMulder47]

52 minutes ago, Heather Fisher said:

In the process of getting a definitive diagnosis. My symptoms: brain fog, achy joints, CONSTIPATION, vit D deficiency, high lipids (no matter how healthy my diet), B12 wnl, not anemic, and the most irritating symptom-fatigue (even with enough sleep). I had blood test IgA is low but the gluten sensitive parameters are negative. PCP said low IgA can cause a false negative for celiac disease. 
 

can anyone relate or have suggestions or insight?

My test came back extremely high but my biopsy came back as long and delicate villa. Hey the fatigue even with enough sleep is extremely annoying. 

[knitty kitty]

@DMulder47,

Many of the symptoms you describe are attributable to vitamin deficiencies.  Most people with Celiac Disease develop them because of the malabsorption and inflammation caused by celiac disease.

My heart palpitations and high heart rate were caused by a deficiency in Thiamine B1.  I had all the tests, too, and the doctors couldn't find anything.  POTS (Postural Orthistatic Tachycardia Syndrome) is caused by Thiamine deficiency.  Difficulty swallowing and nausea, migraines, ADHD and that extreme fatigue are all symptoms of Thiamine deficiency.  Blood tests can show blood levels within "normal" range, but you can still have a thiamine deficiency.  Thiamine is used inside cells.  A deficiency in Thiamine inside cells is not reflected in blood levels.  

Thiamine needs the other B vitamins and magnesium to work properly, so those need to be supplemented as well as other vitamins and minerals that are frequently low, Vitamin D and magnesium.

A combination of Thiamine, Riboflavin, Niacinamide, Pyridoxine, and Pantothenic Acid B 5 have been shown to help hemorrhoids.

@McNish,

Loss of Potassium is common in Thiamine deficiency.  This article explains...

https://www.hormonesmatter.com/thiamine-deficiency-causes-intracellular-potassium-wasting/

Anxiety is another symptom of Thiamine deficiency.

@Heather Fisher,

Constipation is an early symptom of Thiamine deficiency.  Thiamine improves brain function and helps clear that brain fog.  Thiamine relieves the fatigue.

High lipids are a symptom of Niacin B3 deficiency.  Niacin has been used by doctors to lower high lipid levels for over fifty years.  

Talk to your doctor and nutritionist about supplementing with vitamins and minerals.  Even if you have been on the gluten free diet, you can still develop nutritional deficiencies. 

 Thiamine deficiency disorders: a clinical perspective

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

Keep us posted on your progress!

Edited March 9 by knitty kitty
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[DMulder47]

Kitten kitty , thank you! This is all new to me. This is very helpful. 

[Katanya]

Get tested for POTS - it could be your problem. Also does anyone else have very high ALP - Alkaline Phosphatate levels when ingesting gluten? 

[trents]

13 minutes ago, Katanya said:

Get tested for POTS - it could be your problem. Also does anyone else have very high ALP - Alkaline Phosphatate levels when ingesting gluten? 

High liver enzymes, including alk phos, are common with celiac disease.

[Heather Fisher]

I really appreciate all the feedback. I have an endoscopy scheduled for May 1st and will definitely prepare myself with a gluten challenge...

[knitty kitty]

POTS and elevated liver enzymes are symptoms of Thiamine Deficiency Disorders.

Thiamine deficiency disorders: a clinical perspective

"Thiamine deficiency also causes depletion of ATP in the liver, which may result in elevated liver enzymes..."

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

And...

https://www.hormonesmatter.com/thiamine-deficiency-causes-problems/