Gluten and rice causing neurological issues

[Russ H]

Yes, but it isn't clear when the tests and diet were performed and how strict the diet was.

Just now, nutritionguy said:

Russ, you state " Rice makes me bloat and burp despite a strict gluten-free diet".  Out of curiosity, does that statement apply to white rice, brown rice, or both?

I only have brown rice in the cupboard.

[knitty kitty]

16 minutes ago, nutritionguy said:

Bechari states "I cut all gluten from my diet one year ago. Blood tests don't indicate celiac disease." According to 2023 American College of Gastroenterology celiac disease guidelines, patients who "have a high-level TTG IgA (>10 fold elevation above the upper limit of normal) with a positive endomysial antibody (EMA) in a second blood sample can be diagnosed as likely celiac disease."   However, the guidelines also state, "After 6 to 12 months on a gluten-free diet, approximately 80 percent of individuals with celiac disease will test negative by serology."

 

Exactly!  Not staying on gluten until all testing is completed is a huge problem!

Many doctors don't understand that antibodies go away if one goes off gluten.  

We have many members who have questionable blood tests for the reason they tried a gluten free diet at home, felt better, then went to the doctor and asked for Celiac tests.  Their antibodies can have been reduced to the point false negatives result.

[knitty kitty]

White rice is easily broken down into glucose.  Our brains like to run on glucose.  

Unfortunately, white rice is usually enriched with thiamine mononitrate, which is shelf stable, but not a bioavailable form our bodies can use.  

Benfotiamine is a form of thiamine that helps promote healing in the small intestine.  

Hiding in Plain Sight: Modern Thiamine Deficiency

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

Edited April 29, 2023 by knitty kitty
Add more information

[wetcat]

On 3/3/2023 at 4:38 PM, bechari said:

Hi,

25 year old male writing for tips, tricks and if anyone else has something similar.

Quick rundown: For years I was really tired, feeling sick, etc... Visited to a many docs who couldn't find a reason for it. Two years ago I found out it was caused by gluten and until then my gluten sensitivity has got progressively worse. I cut all gluten from my diet one year ago. Blood tests don't indicate celiac disease. Now just recently I have begun getting same symptoms from eating rice aswell ;( (jasmine, arborio...). Symptoms are ataxia, pins and needles all over body, also in face, slightly slurred speech, feeling of impending doom, being really tired, not being able to sleep as I am feeling so sick and irritated..., facial blushing.

Docs have taken very extensive general bloodworks (vitamin levels, IGA allergies, MRI, thyroid, celiac test, sex hormones, lymes disease...) and they are all ok.

1,5 years ago I had h. pylori and two later tests show it has been eradicated. Five months ago I had stomach ulcer, but stool sample did not indicate h pylori. Had PPI's and I have continued with limiting coffee, red meat and alcohol and it seems to be fine. I have also type 1 diabetes which is in very good control.

I am worried that my intolerances continue widening, their impact on my social life, health and just in general managing all of this. Before rice also causing issues I was mostly inclining towards some form of celiac, but now I am pondering if it could be something else that could require/benefit from treatment.

Thank you for reading and for any possible replies :)

Hi! Have you heard of gluten ataxia and neuropathy? It is a different form of autoimmunity than celiac: eating gluten causes an autoimmune attack on cerebellum purkinje cells (brain balance center) and potentially other nerves, like peripheral nerves in hands and feet. I have had this diagnosis since 2014. I tested negative for celiac by biopsy, but my symptoms decreased after a month of gluten free diet. My neurologist told me that patients with gluten ataxia can be more sensitive to the presence of gluten than celiac patients. Damage to brain from gluten can be permanent, so it's very important not to cheat. At first, my diet was standard gluten free, which included corn and rice. But a few years into it, I started reacting to corn and rice bran/brown rice. I have had to go completely grain free. I follow "paleo" diet recipes, making my breakfast food from almond or coconut based flour. Simple Mills makes mixes, cookies, and crackers that I can eat. Siete makes grain free tortilla chips, wraps, and taco shells. It's much more difficult than standard gluten free, but you don't want to hurt your brain and lose your ability to balance over time. As for other possibilities for neuropathy, do have your B vitamins, parathyroid, and magnesium levels checked. But if you think you're reacting to grains, you're probably right.

[Beverage]

On 3/15/2023 at 1:35 PM, Scott Adams said:

Mine isn't, and it is California grown. They don't rotate rice and wheat in the same fields as far as I know.

Yes I realize. I was more concerned about cross contamination in the processing/packaging of it.  Worth examining.

[bechari]

Hi! Time for a update with road to recovery.

- I got progressively worse during last spring and summer with diet getting more and more restrictive. Everything with complex carbs was bad.

- I went to doc this autumn and got diagnosed with methane SIBO. I also personally suspect SIFO because I had prevalent fungal infections. I also had some malabsorption.

- SIBO can be hard to treat, but I studied from Reddit SIBO that those that achieved with remission were able to do that by restoring stomach motility. For me what worked was: 1) diet/supplements: linseed, fish oil and psyllium 2) magnesium and eating in moderation when I felt constipated. 3) excercise. Coffee or prune juice did not work long term because they do also irritate stomach.

- Additionally because I had type 1 diabetes and I remembered I had read somewhere that diabetics might sometimes develop some level of pancreatic enzyme insufficiency. I started taking strong enzyme mix with food. This seems to help as well but I am still to try leaving them out if they were just needed for supporting my own digestive system. Also my diabetes has helped me in determining when food actually gets absorbed at right pace (with help of Dexcom)

- Still continuing with 100% gluten free diet and I am wary of cross contamination. I think gluten was the reason why I developed this issue as well. With gluten I get very sick with minimal amounts whereas with rice and others it was always a meal when issues begun.

 

If you have got any questions I am happy to answer.

[bechari]

Breakdown of the relevant lab results:

- Methane SIBO from breath sample

- Deficiencies: Iodine, vitamin-D

- Borderline deficiencies: Omega 3 fatty acids acids, Q10, A-Vitamin, Selenium, Magnesium, Folate, Some omega 6 fatty acids, B5,

- Ferritine low for someone with my diet but for overall health it was still at ok levels

- cholesterol very high charts because of limited diet but now that I am better I am first trying to manage it with diet and see if it helps.

- Fat in stool sample

 

[Raquel2021]

On 3/3/2023 at 4:38 PM, bechari said:

Hi,

25 year old male writing for tips, tricks and if anyone else has something similar.

Quick rundown: For years I was really tired, feeling sick, etc... Visited to a many docs who couldn't find a reason for it. Two years ago I found out it was caused by gluten and until then my gluten sensitivity has got progressively worse. I cut all gluten from my diet one year ago. Blood tests don't indicate celiac disease. Now just recently I have begun getting same symptoms from eating rice aswell ;( (jasmine, arborio...). Symptoms are ataxia, pins and needles all over body, also in face, slightly slurred speech, feeling of impending doom, being really tired, not being able to sleep as I am feeling so sick and irritated..., facial blushing.

Docs have taken very extensive general bloodworks (vitamin levels, IGA allergies, MRI, thyroid, celiac test, sex hormones, lymes disease...) and they are all ok.

1,5 years ago I had h. pylori and two later tests show it has been eradicated. Five months ago I had stomach ulcer, but stool sample did not indicate h pylori. Had PPI's and I have continued with limiting coffee, red meat and alcohol and it seems to be fine. I have also type 1 diabetes which is in very good control.

I am worried that my intolerances continue widening, their impact on my social life, health and just in general managing all of this. Before rice also causing issues I was mostly inclining towards some form of celiac, but now I am pondering if it could be something else that could require/benefit from treatment.

Thank you for reading and for any possible replies 

My story is similar to yours.  I have celiac,  also hashimotos.  About a year and half ago starting having neurological symptoms, numbness and tingling on the right side of my face. Also on my limbs. Dr thought I had MS but neurologist says this is due to celiac.  I also react to soy, dairy and lately realized eggs were a big cause of my neurological symptoms  so no eggs either.  One major breakthrough I found on my journey here is that eliminating iodized salt made all of my neurological symptoms go away.  So I think I was reacting to iodine. There is a lot of iodine in eggs and dairy. You might want to try this. I also more recently react to rice. I was eating it every day since my choices are so limited.  Just like you, doctors have no answers for me. I have my days and after being gluten free for 3 years I don't feel like myself.  I have really tried everything. I also have flushing of the face which did improve a the gluten-free diet but still shows up from time to time. 

[Solomon Wolf]

This is the first place I'm seeing people mentioning flushing of the face (blushing) as a symptom related to gluten. I ended up on a gluten free diet 2 years ago due to bloating and fatigue, and yet after few days I realized that I feel way more confident and my constant blushing mostly disappeared. Every doctor I mentioned this to, looked at me like I'm coming straight from the moon. They've never heard anything like that before - even very know Celiac specialists.

It feels good seeing that I'm not the only one experiencing this.