Gluten and rice causing neurological issues

[bechari]

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 :)

[trents]

Welcome to the forum, bechari!

Were you already eating gluten free when you had testing done for celiac disease? And what tests were done?

[Scott Adams]

Was your gluten-free diet 100% strict, did you eat out in restaurants for example, and did it help at all with your symptoms? It is possible that you could have celiac disease and also have an intolerance to rice.

[bechari]

Hi, thanks for the replies.

5 hours ago, trents said:

Welcome to the forum, bechari!

Were you already eating gluten free when you had testing done for celiac disease? And what tests were done?

As I have type 1 diabetes they have been routinely testing me there every 3 or 2 years for celiac. The test is blood test for tTG-IgA as well as IGA levels in order to determine if I have IG-A deficiency (I do not). Last time the test was done 1,5 years ago when I was still having gluten couple of times a week as my symptoms were mainly just fatigue.

11 minutes ago, Scott Adams said:

Was your gluten-free diet 100% strict, did you eat out in restaurants for example, and did it help at all with your symptoms? It is possible that you could have celiac disease and also have an intolerance to rice.

I have tried to be 100% clear past year, but it took a while to get the right mindset. So I was glutened couple of times from CC mainly from eating outside for sure. Being strict gluten free helps by a lot and takes almost all the symptoms away.

I know you're right having sensitivity to rice is also possible. What boggles me is the symptoms are the same from eating gluten and rice. Though from rice the reaction is significantly milder.

[NanceK]

Hi Bechari -

Have you seen a neurologist? I had these symptoms (ataxia, pins/needles, fatigue, flushing) among others, which led me to a neurologist. I was dx’d with small fiber neuropathy, which can be a cause of celiac disease. It took a while for those symptoms to get better after being gluten-free. Being dx’d with osteoporosis and small fiber neuropathy is how I found out I had celiac disease, as it was “silent.”  The neurologist took a simple tissue biopsy from ankle and hip (in office, no pain) and that’s how the small fiber neuropathy was dx’d. Neurontin (gabapentin) helped initially but now I don’t take it, as being gluten-free helped. Just a thought…

[DALTE04]

You may be suffering from molecular mimicry, where your body mistakes rice or other grains for gluten. Certain proteins, like casein in milk, or those found in grains like rice and corn, look similar to gluten and your body treats them the same. I would look it up. Dr. Amy Meyers talks about it in her books.

[trents]

3 minutes ago, DALTE04 said:

You may be suffering from molecular mimicry, where your body mistakes rice or other grains for gluten. Certain proteins, like casein in milk, or those found in grains like rice and corn, look similar to gluten and your body treats them the same. I would look it up. Dr. Amy Meyers talks about it in her books.

Sometimes this is referred to as "cross reactivity".

[bechari]

2 hours ago, NanceK said:

Hi Bechari -

Have you seen a neurologist? I had these symptoms (ataxia, pins/needles, fatigue, flushing) among others, which led me to a neurologist. I was dx’d with small fiber neuropathy, which can be a cause of celiac disease. It took a while for those symptoms to get better after being gluten-free. Being dx’d with osteoporosis and small fiber neuropathy is how I found out I had celiac disease, as it was “silent.”  The neurologist took a simple tissue biopsy from ankle and hip (in office, no pain) and that’s how the small fiber neuropathy was dx’d. Neurontin (gabapentin) helped initially but now I don’t take it, as being gluten-free helped. Just a thought…

Hi, thanks for your message. I am glad to hear you've recovered so well! It's also reassuring to hear that you're doing fine without meds as they never come without some adverse costs. I don't have any pain either, but to achieve that I've to manage restrictive diet which is time consuming and socially difficult.

I went to a neurologists year ago after my neurological symptoms suddenly became much worse. We did MRI which showed nothing. She didn't think EMG would give insight as my symptoms were so mild, which was correct as by that point I had been one or two months completely gluten free.

What was weird was that she did not acknowledge that gluten could cause neurological issues at all. In my country the public healthcare seems to be run based on nationally set diagnostics criteria and if your symptoms are not there, you do not have those symptoms. Sorry for the vent but docs haven't been much of a help to me 😄.

The diagnosis based on biopsy doesn't seem to be too complicated either so I think I could try to ask for that in some occasion. Though I have recovered pretty well I definitely have some symptoms remaining. One could ask what's the point of pursuing these diagnoses for just individual symptoms, but I think there are several of them.

1) you get a data point to track the situation

2) you and docs don't doubt your symptoms

3) if in the future the medicine discovers something related to the symptom you know for sure it's relevant for you

4) I like the thought that my official health files correspond my situation.

1 hour ago, DALTE04 said:

You may be suffering from molecular mimicry, where your body mistakes rice or other grains for gluten. Certain proteins, like casein in milk, or those found in grains like rice and corn, look similar to gluten and your body treats them the same. I would look it up. Dr. Amy Meyers talks about it in her books.

Hi, thank you for your message! This could be a one reasonable theory.

If someone recommends any research done on this subject please share.

[Scott Adams]

This category on Celiac.com includes research articles on gluten ataxia, which we've summarized:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ 

[NanceK]

1 hour ago, bechari said:

Hi, thanks for your message. I am glad to hear you've recovered so well! It's also reassuring to hear that you're doing fine without meds as they never come without some adverse costs. I don't have any pain either, but to achieve that I've to manage restrictive diet which is time consuming and socially difficult.

I went to a neurologists year ago after my neurological symptoms suddenly became much worse. We did MRI which showed nothing. She didn't think EMG would give insight as my symptoms were so mild, which was correct as by that point I had been one or two months completely gluten free.

What was weird was that she did not acknowledge that gluten could cause neurological issues at all. In my country the public healthcare seems to be run based on nationally set diagnostics criteria and if your symptoms are not there, you do not have those symptoms. Sorry for the vent but docs haven't been much of a help to me 😄.

The diagnosis based on biopsy doesn't seem to be too complicated either so I think I could try to ask for that in some occasion. Though I have recovered pretty well I definitely have some symptoms remaining. One could ask what's the point of pursuing these diagnoses for just individual symptoms, but I think there are several of them.

1) you get a data point to track the situation

2) you and docs don't doubt your symptoms

3) if in the future the medicine discovers something related to the symptom you know for sure it's relevant for you

4) I like the thought that my official health files correspond my situation.

Hi, thank you for your message! This could be a one reasonable theory.

If someone recommends any research done on this subject please share.

Bechari - I think all of your four points are valid. I had an EMG initially and was told I had very mild peripheral neuropathy. Celiac disease was not mentioned. But the symptoms persisted and seemed to worsen, so I saw another neurologist who did another EMG, which showed the same. He suggested the skin biopsy to check for small fiber neuropathy and that showed moderate-severe SFN. I had never even heard of SFN. He said that something is causing it and ran a ton of blood tests and the only thing that came back abnormal was the celiac panel. At the same time, I saw an endocrinologist who said that’s pretty much what caused my osteoporosis to be so severe as well. It might be worthwhile to see another neurologist to pursue this. Best of luck to you and hope you feel better soon!

[DALTE04]

Do you experience any dizziness or vertigo-like symptoms? I was diagnosed in November and have done my best to stay gluten-free. I still have some neuropathy symptoms, including numbness/tingling w/pins and needles, muscle twitches/spasms, and dizziness/vertigo. My symptoms seem to fluctuate and come and go. Some days are great, others not so much. It’s hard to tell if it is the natural process or if CC is the culprit.

[nutritionguy]

On 3/3/2023 at 1:38 PM, bechari said:

I cut all gluten from my diet one year ago.

According to American College of Gastroenterology guidelines,  "After 6 to 12 months on a gluten-free diet, approximately 80 percent of individuals with celiac disease will test negative by serology."

 

On 3/3/2023 at 1:38 PM, bechari said:

Blood tests don't indicate celiac disease. 

Copper deficiency, which can occur with celiac disease, can cause neurologic problems.  Has your doctor ordered a serum copper level?

[nutritionguy]

Bechari,

Please take a look at my italicized comments and questions above.

[Wheatwacked]

More common than copper deficiency would be Thiamine. Especially since the effects were triggered by eating polished rices.  Beriberi is caused by a lack of thiamine. It is common in people whose diet consists mainly of polished white rice, which contains little or no thiamine, in chronic alcoholics with impaired liver function, and is a known (though rare) potential side-effect of gastric bypass surgery.

Also common are deficiencies in the other B vitamins and Choline.  B1, B3, B5, B6, B12 are crucial to energy production in mitochondria. Choline makes up a significant part of cell and mitochondria membranes and acetylcholine for nerve transmission. Deficiancies can cause gall bladder type symptoms in fat digestion and a high homocysteine blood level.

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

Now just recently I have begun getting same symptoms from eating rice aswell

Hiding in Plain Sight: Modern Thiamine Deficiency   "The early symptoms of TD are non-specific and may be easily attributed to any number of disease processes. Unrelenting or uncharacteristic fatigue, changes in mood with a tendency towards hyper-irritability and mood lability are common [4]. A sense of mental fuzziness and subtle decrements in memory are often reported, along with loss of appetite, sleep disturbances and/or gastrointestinal (GI) discomfort and dysmotility. Food intolerances and vomiting may develop as the deficiency progresses. Experimental [5] and case literature [6] suggest GI discomfort and dysmotility may be more prevalent early indications of TD than currently appreciated. A form of GI beriberi has been identified but is under-recognized [7].

Classically defined thiamine deficiency (TD) disorders in the context of alcoholism and malnutrition are familiar, taught in science and health textbooks from high school onward, and yet, for all of that familiarity, not only are most severe cases of deficiency missed, but the early stages, where symptoms are most easily treated, are entirely disregarded ...Insofar as thiamine status is not routinely measured in clinical care and there are no established standards for what constitutes lower or suboptimal thiamine concentrations, or even consensus on what values constitute frank deficiency"

 

[Beverage]

Probably a lame question, but is the rice you are eating labeled gluten free?

[Scott Adams]

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

[trents]

I believe rice is grown in flooded fields so it is not likely gown in the same environment as wheat.

[bechari]

On 3/9/2023 at 1:09 AM, DALTE04 said:

Do you experience any dizziness or vertigo-like symptoms?

Definitely yes

On 3/9/2023 at 6:36 AM, nutritionguy said:

Copper deficiency, which can occur with celiac disease, can cause neurologic problems.  Has your doctor ordered a serum copper level?

Yes two years ago and back then it was fine. 17th May 2021 Copper concentrations in red blood cells 9.4 µmol/l (reference:  8,4 - 12,5)

[knitty kitty]

@bechari,

Do you wash your rice before you cook it? 

Washing rice can wash away the the vitamins in enriched white rice.

Your symptoms sound like mine when I was deficient in vitamins, especially thiamine deficiency.  

Vitamin D deficiency can cause vertigo, but in thiamine deficiency, vertigo, peripheral neuropathy, and muscle spasms.  Thiamine works best with magnesium to clear these symptoms.

[nutritionguy]

14 hours ago, bechari said:

Definitely yes

Yes two years ago and back then it was fine. 17th May 2021 Copper concentrations in red blood cells 9.4 µmol/l (reference:  8,4 - 12,5)

Unfortunately, all copper level determinations I have seen in scientific reports assessing celiac disease are focused on serum copper levels, not red cell copper levels.  I would strongly suggest you have a physician order a serum copper level determination to assess your body's copper stores.

[nutritionguy]

On 4/23/2023 at 6:53 PM, knitty kitty said:

@bechari,

Do you wash your rice before you cook it? 

Washing rice can wash away the the vitamins in enriched white rice.

Your symptoms sound like mine when I was deficient in vitamins, especially thiamine deficiency.  

Vitamin D deficiency can cause vertigo, but in thiamine deficiency, vertigo, peripheral neuropathy, and muscle spasms.  Thiamine works best with magnesium to clear these symptoms.

Out of curiosity, why would anyone with celiac disease want to eat white rice--a product which has had fiber, minerals, and vitamins removed from it?   In my case, I eat brown rice all of the time, and I always wash it; and I cannot even imagine including any white rice in my diet.

[trents]

1 hour ago, nutritionguy said:

Out of curiosity, why would anyone with celiac disease want to eat white rice--a product which has had fiber, minerals, and vitamins removed from it?   In my case, I eat brown rice all of the time, and I always wash it; and I cannot even imagine including any white rice in my diet.

Because it tastes good.

[Russ H]

On 3/3/2023 at 9:38 PM, bechari said:

Symptoms are ataxia, pins and needles all over body, also in face, slightly slurred speech, feeling of impending doom, being really tired,

There are 3 overlapping conditions with a similar aetiology: coeliac disease, dermatitis herpetiformis and gluten induced neuropathy (aka gluten ataxia). You can have them together or individually. They all involve making antibodies to a class of enzymes in the body called tissue transglutaminase (tTG). Classical coeliac disease involves making antibodies to tTG2, dermatitis herpetiformis involves making antibodies to tTG3, and gluten induced neuropathy to tTG6. You have symptoms of neuropathy and it is quite possible that you have antibodies only to tTG6 but not tTG2, and so you are not testing positive. You might also have what is called non-coeliac gluten sensitivity (NCGS), which also causes neurological signs & symptoms. Most tests revolve around tTG2 or deamidated gliadin (DGP) antibodies, so it is difficult to get tested for tTG6 outside specialist centres. This is not a diagnosis, but a possible explanation. I don't know about the rice. Gluten causes the gut to become permeable in susceptible individuals allowing otherwise tolerable proteins to cause problems. Rice makes me bloat and burp despite a strict gluten-free diet.

In the end, if you can't get diagnosed but a gluten-free diet helps your symptoms then stick with it.

[nutritionguy]

17 minutes ago, Russ H said:

There are 3 overlapping conditions with a similar aetiology: coeliac disease, dermatitis herpetiformis and gluten induced neuropathy (aka gluten ataxia). You can have them together or individually. They all involve making antibodies to a class of enzymes in the body called tissue transglutaminase (tTG). Classical coeliac disease involves making antibodies to tTG2, dermatitis herpetiformis involves making antibodies to tTG3, and gluten induced neuropathy to tTG6. You have symptoms of neuropathy and it is quite possible that you have antibodies only to tTG6 but not tTG2, and so you are not testing positive. You might also have what is called non-coeliac gluten sensitivity (NCGS), which also causes neurological signs & symptoms. Most tests revolve around tTG2 or deamidated gliadin (DGP) antibodies, so it is difficult to get tested for tTG6 outside specialist centres. This is not a diagnosis, but a possible explanation. I don't know about the rice. Gluten causes the gut to become permeable in susceptible individuals allowing otherwise tolerable proteins to cause problems. Rice makes me bloat and burp despite a strict gluten-free diet.

In the end, if you can't get diagnosed but a gluten-free diet helps your symptoms then stick with it.

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."

[nutritionguy]

37 minutes ago, Russ H said:

There are 3 overlapping conditions with a similar aetiology: coeliac disease, dermatitis herpetiformis and gluten induced neuropathy (aka gluten ataxia). You can have them together or individually. They all involve making antibodies to a class of enzymes in the body called tissue transglutaminase (tTG). Classical coeliac disease involves making antibodies to tTG2, dermatitis herpetiformis involves making antibodies to tTG3, and gluten induced neuropathy to tTG6. You have symptoms of neuropathy and it is quite possible that you have antibodies only to tTG6 but not tTG2, and so you are not testing positive. You might also have what is called non-coeliac gluten sensitivity (NCGS), which also causes neurological signs & symptoms. Most tests revolve around tTG2 or deamidated gliadin (DGP) antibodies, so it is difficult to get tested for tTG6 outside specialist centres. This is not a diagnosis, but a possible explanation. I don't know about the rice. Gluten causes the gut to become permeable in susceptible individuals allowing otherwise tolerable proteins to cause problems. Rice makes me bloat and burp despite a strict gluten-free diet.

In the end, if you can't get diagnosed but a gluten-free diet helps your symptoms then stick with it.

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?