Non Celiac Gluten Sensitivity

[drwyrick]

NCGS is my final diagnosis, methinks. I was born with a Nightshade Food intolerance.  I'm 54 years young, as a kid we were poor. Mom made beans, taters, and cornbread  EVERY day. Sometimes twice a day with little meat in our early developmental years. I'm now intolerant to potatoes and beans (of ANY kind) and the CORN (4x higher lectins than other foods). Lectins cause me a burning in my joints like psoriatic arthritis...but NO PsA detected. Corn also gives me psoriasis. Tricky these food issues are! Suffering stomach issues my entire life, I became mentally & physically ill. Lost my vision, hearing, balance, horrible incontinence, and eventually a HUGE precancerous tumor in my colon that almost killed me. Been 2 yrs since that surgery. Recovery seems to be a decade long process. I've been on a LTGFDWC for almost 4 yrs now, along with dairy, soy & Nightshade free for 2 yrs. These illnesses have destroyed my brain & my body. My muscles and connective tissues throught my body are damaged. And it's painful to just move around at times. I suffer from cognitive decline due to gluten ataxia. Slower thought processes, reaction times etc.

TWO Differences  (for me) put me in the NCGS diagnosis. 

1st) NO DAMAGE TO INTESTINES  and

2nd) DO NOT TEST POSITIVE FOR GLUTEN ANTIBODIES 

**IF anyone had explained THIS to me I feel I could've began figuring out my health problems a LOT sooner. Gluten IS tricky. So are Nightshades bc everyone in my family has a different level of sensitivity to it. My youngest family member to have  passed from Colon cancer died at just 19 yrs of age. BE CAREFUL what u put in your bodies. EVERYTHING has a direct affect on the brain. Negative or positive.  Be a POSITIVE foodie. Our bodies weren't made for processed foods. OR the wheat, dairy and soy that are in EVERY processed food on the shelf. Take care & love yourself

 

[Scott Adams]

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.

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[knitty kitty]

On 9/19/2023 at 10:17 AM, drwyrick said:

NCGS is my final diagnosis, methinks. I was born with a Nightshade Food intolerance.  I'm 54 years young, as a kid we were poor. Mom made beans, taters, and cornbread  EVERY day. Sometimes twice a day with little meat in our early developmental years. I'm now intolerant to potatoes and beans (of ANY kind) and the CORN (4x higher lectins than other foods). Lectins cause me a burning in my joints like psoriatic arthritis...but NO PsA detected. Corn also gives me psoriasis. Tricky these food issues are! Suffering stomach issues my entire life, I became mentally & physically ill. Lost my vision, hearing, balance, horrible incontinence, and eventually a HUGE precancerous tumor in my colon that almost killed me. Been 2 yrs since that surgery. Recovery seems to be a decade long process. I've been on a LTGFDWC for almost 4 yrs now, along with dairy, soy & Nightshade free for 2 yrs. These illnesses have destroyed my brain & my body. My muscles and connective tissues throught my body are damaged. And it's painful to just move around at times. I suffer from cognitive decline due to gluten ataxia. Slower thought processes, reaction times etc.

TWO Differences  (for me) put me in the NCGS diagnosis. 

1st) NO DAMAGE TO INTESTINES  and

2nd) DO NOT TEST POSITIVE FOR GLUTEN ANTIBODIES 

**IF anyone had explained THIS to me I feel I could've began figuring out my health problems a LOT sooner. Gluten IS tricky. So are Nightshades bc everyone in my family has a different level of sensitivity to it. My youngest family member to have  passed from Colon cancer died at just 19 yrs of age. BE CAREFUL what u put in your bodies. EVERYTHING has a direct affect on the brain. Negative or positive.  Be a POSITIVE foodie. Our bodies weren't made for processed foods. OR the wheat, dairy and soy that are in EVERY processed food on the shelf. Take care & love yourself

 

Hi, how are you doing?

Were you had a genetic test to look for the known Celiac genes?  There are some Celiac people who are seronegative in blood tests.  I'm one.  Diabetes, anemia and Thiamine deficiency can cause false negatives on tTg IgA tests.  I have two Celiac genes, but only one is needed for potential Celiac to develop.  

Nightshades contain glycoalkaloids that promote Leaky Gut Syndrome.  This means that molecules in food, like lectins from beans, can travel to joints, causing autoimmune reactions and inflammation there as in arthritis.  

Corn is not a good source of Niacin B 3.  Not having sufficient Niacin can cause dermatitis.  It can easily be confused with other skin conditions like eczema and psoriasis.  Other symptoms of insufficient Niacin include diarrhea and dementia.  

Have you ever been checked for nutritional deficiencies?  Having digestive issues for long periods of time can affect the absorption of all the essential vitamins and minerals.  

Loss of vision, hearing, balance, incontinence, and ataxia are symptoms commonly seen in Thiamine Deficiency Disorders.  I had all of these symptoms when I was extremely malnourished prior to my diagnosis.  Thiamine deficiency and mitochondrial dysfunction has been linked to cancer.  High dose Thiamine has been shown to have anti-cancer effects.  We need more Thiamine when we're emotionally stressed, have had a physical trauma like surgery or an injury, and are physically active outdoors.  The brain thinking at a desk job uses as much Thiamine as a runner's muscles use during a marathon.  Thiamine insufficiency affects the parts of the brain that control the things we don't have to consciously think about, digestion, blood pressure adjustments when we stand or sit, heart rate, and balance.  Thiamine deficiency will prevent tTg IgA antibody production.  

Thiamine Deficiency Disorders need to be corrected quickly because some damage can be permanent.  I have acalculia (can't do math) and I can't read music anymore. 

I took High Dose Thiamine to correct my deficiencies.  I also supplemented the other essential B vitamins.  There's eight that need each other to function properly.  Thiamine needs magnesium, too.  

Other vitamins and minerals commonly seen in malabsorption and Celiac Disease include Vitamin D to help calm down the immune system,  Vitamin A for skin health, zinc for the immune system, copper and iron. 

Blood tests for nutritional deficiencies are not  accurate and can reflect any supplements taken in the previous eight weeks.  Discuss supplementation while healing with your doctor.

The eight essential B vitamins are water soluble, so the body can easily excrete them if not needed.  

Damage to the small intestine in Celiac Disease can be patchy.  Considering the small intestine is twenty feet or seven meters long, if laid flat it would be the size of a tennis court, so damage may be missed.  Damage may also be microscopic.  Biopsies need to be examined microscopically by a pathologist experienced in Celiac Disease.  

Since Thiamine deficiency can prevent tTg IgA antibody production in the small intestine, damage might not be seen.  Other antibodies, like DGP IgG, may still be produced by another type of antibody producing cell.  

Hope this helps!

Keep us posted on your progress!

References:

https://pubmed.ncbi.nlm.nih.gov/10884708/

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

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

And...

Thiamine deficiency disorders: a clinical perspective

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

And...

Dr. Derrick Lonsdale and Dr. Chandler Marrs....high dose Thiamine...

https://www.hormonesmatter.com/beyond-deficiency-thiamine-metabolic-stimulant/

 

[Bev in Milw]

On 9/19/2023 at 10:17 AM, drwyrick said:

NCGS is my final diagnosis, methinks. I was born with a Nightshade Food intolerance.  I'm 54 years young, as a kid we were poor. Mom made beans, taters, and cornbread  EVERY day. Sometimes twice a day with little meat in our early developmental years. I'm now intolerant to potatoes and beans (of ANY kind) and the CORN (4x higher lectins than other foods). Lectins cause me a burning in my joints like psoriatic arthritis...but NO PsA detected. Corn also gives me psoriasis. Tricky these food issues are! Suffering stomach issues my entire life, I became mentally & physically ill. Lost my vision, hearing, balance, horrible incontinence, and eventually a HUGE precancerous tumor in my colon that almost killed me. Been 2 yrs since that surgery. Recovery seems to be a decade long process. I've been on a LTGFDWC for almost 4 yrs now, along with dairy, soy & Nightshade free for 2 yrs. These illnesses have destroyed my brain & my body. My muscles and connective tissues throught my body are damaged. And it's painful to just move around at times. I suffer from cognitive decline due to gluten ataxia. Slower thought processes, reaction times etc.

TWO Differences  (for me) put me in the NCGS diagnosis. 

1st) NO DAMAGE TO INTESTINES  and

2nd) DO NOT TEST POSITIVE FOR GLUTEN ANTIBODIES 

**IF anyone had explained THIS to me I feel I could've began figuring out my health problems a LOT sooner. Gluten IS tricky. So are Nightshades bc everyone in my family has a different level of sensitivity to it. My youngest family member to have  passed from Colon cancer died at just 19 yrs of age. BE CAREFUL what u put in your bodies. EVERYTHING has a direct affect on the brain. Negative or positive.  Be a POSITIVE foodie. Our bodies weren't made for processed foods. OR the wheat, dairy and soy that are in EVERY processed food on the shelf. Take care & love yourself

 

This might be helpful.   I listened to 

[Bev in Milw]

This link might be helpful…https://pubmed.ncbi.nlm.nih.gov/29102613/
I listened to Celiac Forum by the Celiac Center at Columbia  University sometime last year. One of the presentations was by a Norwegian research dr. He was involved in a subsequent study that was able to determine that those with celiac, an intolerance to specific proteins in gluten, produced an IL-2 autoimmune immune response.  IL-2 as not found in those determined to have NCGS.    
   Researchers determined they were react to fructan, a specific type of FODMAP carbohydrates that are predominantly found in gluten containing grains.  Gluten-free diet effective treats both group but it’s for entirely different reasons—protein sensitivity vs non-digestible sugars. 
   (Unfortunately, I haven’t seen a link to latest article yet. At similar events, researchers often share results of work in process, ususl aftet it’s been accepted for publication.  Actual article isn’t archived on PubMed until actual publication.)
  
  Testing to dx NCGS still remains a process of exclusion.  While checking for IL-2 is currently a research lab thing, its absence, or presence, still only defines a celiac dx.  And like celiac screening, having a specific test NCGS doesn’t mean drs would be aware enough of condition to run it…

fyi…Post-Covid my GI system was off.  I had been I’d been taking the HCL- form of thiamin (B1) for some time, but because gluten-free foods aren’t enriched & also because fevers deplete B1 reserves.  Read that B3/niacin def was 3-D’s…Diarrhea, dermatitis, dementia (pellegra) & decided to add some in.  Used 1/4 tab of Solray 100 mg nicotinic acid. (I flush with higher dose!!!) After 6/8 wks, I notice “my stomach has ‘just disappeared’—no noticeable activity, quiet after nearly 40 yrs gluten-free.  Rash from a nitrate sensitive was also improbable & months post-Covid brain-fog lifted.  
I was truly surprised.   
 Found an article later that said the nicotinic avid for of B3 is used to treat high cholesterol (mine dropped a bunch but I’d  also added healthy fats) while the niacinamide got as used to treat deficiency.  

   I break pills for minimal dosing, so  do ~25 mg of both types of B3 a day., similar with B1-HCl, all still higher than  RDA’s.  (I don’t mess with B2/riboflavin after seeing note that excess dose will cause body to flush entire B2 reserve.) 

Best of luck!

 

 

[knitty kitty]

There are eight essential B vitamins.  They depend on each other to work properly.  Thiamine interacts with each and every B vitamin.  Thiamine and Pyridoxine B6 make life sustaining enzymes.  Same for Thiamine and Riboflavin. 

Since the gluten free diet can be low or deficient in B vitamins, it's better to take some of all of them.

I would like to see the information you mentioned about excess Riboflavin causing flushing of stores.