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

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. 

8 hours ago, 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. 

Please don't project your own anecdotal experience on everyone else. The term "gluten" is sometimes loosely applied to proteins found in grains other than wheat, barley and rye but for the celiac/NCGS community the term "gluten" has a more specific reference. While it is probably true that we rely too heavily on grains in our diet, it is also true that they can be an excellent source of nutrition when used in moderation.

I agree, and while there is a small minority of people with celiac disease who only recover after excluding all grains, most people with celiac disease can include corn, sorghum, quinoa, rice, millet, etc, without issues. 

My apologies for any provocation. I only intended to ask a question. Thus the question make. I get the benefit of the nutrients found in grains. My question is still unanswered. Why would I be caution about dairy & not about other obvious glutens? My younger brother died recently. With an awful cancer in his tummy. Only trying to stay alive. I did have a biopsy at my last endoscopy. Thanks in advance. No offense instead. 

FYI I was devastated to learn even rice was off the table for me. I’m very sick even one speck. My blood sugar drops & I faint!

The gluten content in corn is nearly as high as rye. I’m sorry for any offense. I will keep asking this until I get an answer.

Leann horne, apparently your are cross reacting to proteins found in these other grains that resemble the gluten found in wheat, barley and rye. But if when you eat rice your blood sugar drops and you faint, that does not sound like a celiac reaction. It sounds like some kind of allergic reaction.

I am sorry for your loss.  I think the problem in your question is "the gluten in all grains be recognized as problematic"

This may explain it better, from Johns Hopkins: 

Quote

 

Rethink your grains:

Avoid all products with barley, rye, triticale (a cross between wheat and rye), farina, graham flour, semolina, and any other kind of flour, including self-rising and durum, not labeled gluten-free.

Be careful of corn and rice products. These don’t contain gluten, but they can sometimes be contaminated with wheat gluten if they're produced in factories that also manufacture wheat products. Look for such a warning on the package label.

 

53 minutes ago, trents said:

when you eat rice your blood sugar drops and you faint, that does not sound like a celiac reaction.

Your blood sugar drop from eating rice sounds like a deficiency in Thiamine.  Celiac Disease causes malabsorption of some 20 vitamins and minerals that should be absorbed in the small intestine but due to villi damage caused by gluten sensitivity are not.  To that add the fact that many of the vitamin and minerals that are fortified in gluten products are not fortified in gluten free processed foods. Our Mad American Diet is inherently deficient, and refined grains are a large part of that deficiency.

Then add our MAD diet typically has omega 6 to omega 3 ratio of between 14:1 and 20:1, highly inflammatory.   Benificial bacteria don't do well in that environment. Optimum is less than 3:1.  Sweet potatoes are 17:1.  

Around 40% of us don't get enough vitamin D, 90% not enough Choline, Iodine intake is one half what we ate in 1970. The recommended Dietary Value for potassium is 4700 mg a day, most Americans eat 2300 mg.  Low potassium intake is a world wide concern, especially for heart health.

Vegetables: Contents of Omega – 3 and Omega – 6

'

7 hours ago, Leann horne said:

My apologies for any provocation. I only intended to ask a question. Thus the question make. I get the benefit of the nutrients found in grains. My question is still unanswered. Why would I be caution about dairy & not about other obvious glutens? My younger brother died recently. With an awful cancer in his tummy. Only trying to stay alive. I did have a biopsy at my last endoscopy. Thanks in advance. No offense instead. 

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

@Leann horne,

Welcome to the forum.  

I agree with @Wheatwacked.  Your fainting after rice sounds like a deficiency in Thiamine.  

Thiamine is needed to turn carbohydrates into energy for our bodies.  A sudden influx of simple carbohydrates like rice can cause a big demand for Thiamine.  If we don't have sufficient Thiamine, the body starts shutting down different functions in order to conserve what little Thiamine there is.  With a greater demand for Thiamine in the digestive system, other "operating systems" (like consciousness) get turned off temporarily, hence fainting.

Keep in mind that while gluten containing products are required to be enriched with vitamins like thiamine, gluten free products, like alternative grains, aren't required to be enriched.  So the gluten free diet for Celiac Disease can be deficient in essential nutrients.  

Adding to the fact that the gluten free diet can be low in essential nutrients, malabsorption due to the inflammation and damage caused by Celiac Disease compounds the problem of nutritional deficiencies.  

A subclinical Thiamine insufficiency can drag on for years.  Symptoms may mysteriously wax and wane. A twenty percent increase in dietary thiamine results in an eighty percent increase in brain function, which results in an improvement of symptoms.  

Continued Thiamine insufficiency can result in Gastrointestinal Beriberi, with symptoms that resemble "being glutened".  

High doses of Thiamine (500 mg - 1500 mg per day) are needed to correct the insufficiency.  Benfotiamine is a form of Thiamine that is beneficial in healing the digestive system.  Thiamine needs all the rest of the B vitamins and magnesium to work properly, so a B Complex, Benfotiamine and Magnesium Glycinate should be taken together.  Vitamin D and zinc also helps regulate and calm the immune system.  It's very important to supplement essential nutrients in order to boost our ability to absorb them and heal.  

Dr. Derrick Lonsdale and Dr. Chandler Marrs have studied how Thiamine deficiency is frequently overlooked.  Here's an article from their site.  

https://www.hormonesmatter.com/tag/syncope-thiamine/

Thiamine deficiency has been shown to be a factor in the development of cancer.  Sorry for your loss.  I've lost family members to cancer, too.  

Do talk to a nutritionist and your doctor about supplementing with vitamins and minerals.  Although blood tests are not accurate measurements of vitamin deficiencies, taking B vitamins are beneficial.  

Hope this helps you find peace.

All my levels are good. The gluten prevents me from absorbing any nutrients. Zein is the name of the gluten protein found in corn. Thanks you

2 hours ago, knitty kitty said:

@Leann horne,

Welcome to the forum.  

I agree with @Wheatwacked.  Your fainting after rice sounds like a deficiency in Thiamine.  

Thiamine is needed to turn carbohydrates into energy for our bodies.  A sudden influx of simple carbohydrates like rice can cause a big demand for Thiamine.  If we don't have sufficient Thiamine, the body starts shutting down different functions in order to conserve what little Thiamine there is.  With a greater demand for Thiamine in the digestive system, other "operating systems" (like consciousness) get turned off temporarily, hence fainting.

Keep in mind that while gluten containing products are required to be enriched with vitamins like thiamine, gluten free products, like alternative grains, aren't required to be enriched.  So the gluten free diet for Celiac Disease can be deficient in essential nutrients.  

Adding to the fact that the gluten free diet can be low in essential nutrients, malabsorption due to the inflammation and damage caused by Celiac Disease compounds the problem of nutritional deficiencies.  

A subclinical Thiamine insufficiency can drag on for years.  Symptoms may mysteriously wax and wane. A twenty percent increase in dietary thiamine results in an eighty percent increase in brain function, which results in an improvement of symptoms.  

Continued Thiamine insufficiency can result in Gastrointestinal Beriberi, with symptoms that resemble "being glutened".  

High doses of Thiamine (500 mg - 1500 mg per day) are needed to correct the insufficiency.  Benfotiamine is a form of Thiamine that is beneficial in healing the digestive system.  Thiamine needs all the rest of the B vitamins and magnesium to work properly, so a B Complex, Benfotiamine and Magnesium Glycinate should be taken together.  Vitamin D and zinc also helps regulate and calm the immune system.  It's very important to supplement essential nutrients in order to boost our ability to absorb them and heal.  

Dr. Derrick Lonsdale and Dr. Chandler Marrs have studied how Thiamine deficiency is frequently overlooked.  Here's an article from their site.  

https://www.hormonesmatter.com/tag/syncope-thiamine/

Thiamine deficiency has been shown to be a factor in the development of cancer.  Sorry for your loss.  I've lost family members to cancer, too.  

Do talk to a nutritionist and your doctor about supplementing with vitamins and minerals.  Although blood tests are not accurate measurements of vitamin deficiencies, taking B vitamins are beneficial.  

Hope this helps you find peace.

Oryzenin is rice gluten. It has the lease amount of all grains. The gluten prevents any nutrient absorption.