Unraveling Celiac Disease Symptoms, Diet Adherence, and Quality of Life

3 hours ago, Scott Adams said:

This article may be helpful, but in the end you might need to eliminate all grains to be healthy. 

With all due respect. Avenin is another gluten protein found in oats

Oryzenin is a protein derived from rice. Rice itself is naturally gluten-free, which means that oryzenin, being derived from rice, is also gluten-free. This makes oryzenin a suitable protein source for individuals who need to adhere to a gluten-free diet due to conditions such as celiac disease or gluten sensitivity.

Zein is a protein derived from corn (maize). Similar to rice, corn is naturally gluten-free, which means that zein, as a protein derived from corn, is also inherently gluten-free. This makes zein a suitable ingredient for individuals who need to follow a gluten-free diet due to conditions like celiac disease or gluten sensitivity.

Avenin is a protein found in oats. While oats are naturally gluten-free, they are often processed in facilities that also handle gluten-containing grains like wheat, barley, and rye. As a result, oats can be contaminated with gluten during processing, unless they are specifically labeled and certified as gluten-free.

For most people with celiac disease, uncontaminated oats (labeled as gluten-free oats) are generally safe to consume in moderate amounts. However, some individuals with celiac disease may still react to avenin, even in gluten-free oats, due to its similarity to gluten. Therefore, it's essential for individuals with celiac disease to monitor their reactions to oats and consult with their healthcare provider about including oats in their diet.

Leann horne, what is the name of the gluten protein found in wheat, barley and rye?

Here is a diagram that shows how different grains are related.  Wheat, rye and barley (and their proteins) are more closely related than the other grains shown.  Most with celiac disease only have to worry about these three. Of the others, oats are the most closely related, and some with celiac disease have trouble with oats.

On 2/13/2024 at 3:18 AM, Leann horne said:

When will the gluten in all grains be recognized as problematic? I’ve been struggling for 10 years only to learn all grains have gluten, and cause me pain. Grain free since September & my life has changed for the better, dramatically. 

I’m sure both my parents have undiagnosed celiac. My behaviors & eating habits have not helped. As children we ate raw pasta & in my 30’s I ate tons of raw oats, tons! I also was a big beer drinker. We hen I quit the beer soon after I was diagnosed celiac 2010Since removing grains in September I can feel energy from food. I never had that happen before. Since being diagnosed gluten-free packaged food has caused pain. Oat too. The fainting & chest pain were presenting issues that had to be addressed. rigorous testing revealed low blood sugar. So much so that I couldn’t continue. Gluten rather gliadine or any of the other of the thousands of types causes me pain. It’s a neurotoxin so I also get anxiety causing chest pain.  Maybe the dr only warned me about milk & not corn because it’s rare?

10 hours ago, Scott Adams said:

Oryzenin is a protein derived from rice. Rice itself is naturally gluten-free, which means that oryzenin, being derived from rice, is also gluten-free. This makes oryzenin a suitable protein source for individuals who need to adhere to a gluten-free diet due to conditions such as celiac disease or gluten sensitivity.

Zein is a protein derived from corn (maize). Similar to rice, corn is naturally gluten-free, which means that zein, as a protein derived from corn, is also inherently gluten-free. This makes zein a suitable ingredient for individuals who need to follow a gluten-free diet due to conditions like celiac disease or gluten sensitivity.

Avenin is a protein found in oats. While oats are naturally gluten-free, they are often processed in facilities that also handle gluten-containing grains like wheat, barley, and rye. As a result, oats can be contaminated with gluten during processing, unless they are specifically labeled and certified as gluten-free.

For most people with celiac disease, uncontaminated oats (labeled as gluten-free oats) are generally safe to consume in moderate amounts. However, some individuals with celiac disease may still react to avenin, even in gluten-free oats, due to its similarity to gluten. Therefore, it's essential for individuals with celiac disease to monitor their reactions to oats and consult with their healthcare provider about including oats in their diet.

16 hours ago, Leann horne said:

All my levels are good. The gluten prevents me from absorbing any nutrients.

 With no disrespect, I would call this an oxymoron.

Most of the common blood tests are measuring only the amount of that which is in the blood.  In the case of potassium for example, the ratio between Sodium (Na) and Potassium (K) is essential to heart function.  "Total body potassium is approximately 55 mEq/kg body weight. Of this amount, 98% is in the intracellular compartment (primarily in the muscle, skin, subcutaneous tissue, and red blood cells) and 2% is in the extracellular compartment. (Serum Potassium)"  Magnesium powers the pump that maintains that differential.  The osmotic and electrolytic difference between intracellular and extracellular potassium is what facilitates the movement of nutrients in and out of the cells.  Because the Na:K ratio is so important to heart function and heart function is so important to staying alive, blood levels are a higher priority.  You can have normal blood levels, yet your cells are starving.  

"Our ancestors in the Paleolithic era consumed a high-potassium and low-sodium diet (about 11,000 mg/day potassium and 700 mg/day sodium) with a ratio of 16:1 Kidney Is Essential for Blood Pressure Modulation by Dietary Potassium"

Compare that to our current K:Na ratio of 0.79:1     🥵

Until you get your vitamin and mineral intakes replenished, you will continue to have metobolic dysfunction.

I have no doubt your parents are undiagnosed Celiac Disease.  More recent studies are indicating that up to 40% of 1st degree relatives of diagnosed Celiac Disease patients are undiagnosed positive for Celiac.  My family, too, is in denial.  Modern Wheat, as result of Nobel Prize winner Norman Borlaug's Green Revolution research in the 1950s is very addictive.  When was the last time someone got angry at you for suggesting they give up eating carrots?

Give us this day our daily bread.  

Quote

Sodium/Potassium Ratio Linked to Cardiovascular Disease Risk

The results, published in the January 12, 2009, issue of the Archives of Internal Medicine, showed a significant increase in the risk of cardiovascular disease with higher ratios of sodium to potassium. A high sodium/potassium ratio was a stronger indicator of increased risk among the participants in the study than levels of either sodium or potassium alone.... Recent national nutrition surveys show that, on average, Americans consume about 3300 mg of sodium per day (almost 1-1/2 tsp per day of salt) and 2600 mg potassium per day. These are far from the recommended goals of 2300 mg or less for sodium and 4700 mg or more for potassium. In fact, a recent report found that only 13% of the population is meeting the sodium goal and well below 5% is meeting the potassium goal.

4 hours ago, Wheatwacked said:

 With no disrespect, I would call this an oxymoron.

Most of the common blood tests are measuring only the amount of that which is in the blood.  In the case of potassium for example, the ratio between Sodium (Na) and Potassium (K) is essential to heart function.  "Total body potassium is approximately 55 mEq/kg body weight. Of this amount, 98% is in the intracellular compartment (primarily in the muscle, skin, subcutaneous tissue, and red blood cells) and 2% is in the extracellular compartment. (Serum Potassium)"  Magnesium powers the pump that maintains that differential.  The osmotic and electrolytic difference between intracellular and extracellular potassium is what facilitates the movement of nutrients in and out of the cells.  Because the Na:K ratio is so important to heart function and heart function is so important to staying alive, blood levels are a higher priority.  You can have normal blood levels, yet your cells are starving.  

"Our ancestors in the Paleolithic era consumed a high-potassium and low-sodium diet (about 11,000 mg/day potassium and 700 mg/day sodium) with a ratio of 16:1 Kidney Is Essential for Blood Pressure Modulation by Dietary Potassium"

Compare that to our current K:Na ratio of 0.79:1     🥵

Until you get your vitamin and mineral intakes replenished, you will continue to have metobolic dysfunction.

I have no doubt your parents are undiagnosed Celiac Disease.  More recent studies are indicating that up to 40% of 1st degree relatives of diagnosed Celiac Disease patients are undiagnosed positive for Celiac.  My family, too, is in denial.  Modern Wheat, as result of Nobel Prize winner Norman Borlaug's Green Revolution research in the 1950s is very addictive.  When was the last time someone got angry at you for suggesting they give up eating carrots?

Give us this day our daily bread.  

 

 

Thankfully I went to a hematologist. My blood went into metal tubes. Not the normal glass ones lol. I understand anyone would want to think rice is ok for celiacs. During my last endoscopy is said to the dr why didn’t you tell me all grains could make me sick. He’s said rice is the least one. I said & I can’t eat it. He says I have to see him again next year. Trust me I’ve had a full panel on my blood work. I’m very healthy. I run, long & am very active. Tip top, until I have a touch or rice syrup. 

Hi Leann horne,

I am glad you are doing well now.

What was the doctor's conclusion from this latest endoscopy?

Would you mind sharing some of the latest blood work results?

Vitamins D, B12, B6, Homocysteine, Folate, Thiamin (Vitamin B1) Whole Blood, Total IgA, tTG IgA in particular.  Include "normal" range if you can because labs use different measuring systems.  For example 80 ng/ml of vitamin D3 in the blood is the same as 200 nmol/L.  Same answer, different way to measure.

Maybe your numbers can help someone.  Thanks

Most of us with celiac disease will thrive on a gluten-free diet, while some will need to eliminate oats too, and some corn, soy, dairy, etc. Those with celiac disease and ongoing symptoms will need to figure out their additional food intolerance issues to get healthy--and for a small minority this may be a grain-free diet. None of this changes the description of the grains involved in triggering celiac disease, which doesn't include rice, corn, sorghum, etc.

23 hours ago, Wheatwacked said:

Hi Leann horne,

I am glad you are doing well now.

What was the doctor's conclusion from this latest endoscopy?

Would you mind sharing some of the latest blood work results?

Vitamins D, B12, B6, Homocysteine, Folate, Thiamin (Vitamin B1) Whole Blood, Total IgA, tTG IgA in particular.  Include "normal" range if you can because labs use different measuring systems.  For example 80 ng/ml of vitamin D3 in the blood is the same as 200 nmol/L.  Same answer, different way to measure.

Maybe your numbers can help someone.  Thanks

I’ll will need to look at my numbers. The latest from the endoscopy, was I had some polyp in sigmoid colon, recto sigmoid colon. One 5mm & one 3 mm Thankfully it was all benign. I return again in September. I feel everyday like I’m better. My system are always gone.  Thanks everyone it helps to talk about it.

@Leann horne,

Plants contain Lectins.  Lectins are proteins that bind carbohydrates together.  Lectins are concentrated in the seeds of plants.  Gluten is a lectin in wheat.  Zein is the lectin in corn (maize).  There are lectins in rice, and other edible grains and seeds.  Legumes (beans) and pulses contain lectins.  Nuts are high in lectins.  There are other plants like tomatoes and potatoes that contain high levels of lectins.  

Lectins cause inflammation in the digestive tract.  Lectins promote inflammation and can trigger the autoimmune response in Celiac Disease.  Lectins can promote irritation in the lining of the gastrointestinal tract, contributing to the development of colonic polyps.

Following a Paleo diet which excludes grains, seeds, nuts, pulses and legumes is beneficial.  Removing Lectins from the diet helps lower inflammation and allows for healing.  

Increasing the availability of vitamins and minerals for absorption by supplementation will help heal our bodies.  

Blood samples are collected in metal tubes when there's a suspicion of a seriously contagious blood borne pathogen like syphilis (in which during the later stages one goes crazy).  Happened to me, too.  Negative on my test result.  I was severely deficient in nutrients like the B vitamins (needed to heal and repair our bodies), Vitamin D (calms and regulates the immune system), and minerals like magnesium and potassium (also help heal and repair our bodies).  Vitamin deficiencies are not on most doctors' radar.  

Hope you choose a low lectin Paleo diet and supplementation of vitamins and minerals.  Talk to your doctor and nutritionist.  

References:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1115436/

https://pubmed.ncbi.nlm.nih.gov/25599185/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7036108/

https://pubmed.ncbi.nlm.nih.gov/28087670/

If you'd like to read more about Lectins, we have several articles on the topic here:

https://www.celiac.com/search/?&q=Lectins&type=cms_records2&quick=1&search_and_or=and&search_in=titles&sortby=relevancy