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Could Rice Be A Problem? Anyone With Neuro Symptoms From Rice?
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I have been trying to put all the pieces together since my diagnosis 1.5 yrs ago.  I have been having lingering neuro symptoms that no one can figure out.  I have been checked for seizures, all other autoimmunes etc...and of course, my file at the hospital needs it's own zip code.  I know there is something else wrong....could it still be the damage from the celiac? Of course, but in my gut (no pun intended) I believe it is more.   

I have been logging lately, and it came to me this morning.  OMG, could it be RICE?

I am extremely sensitive to gluten exposure.  I react insanely to gluten-free oats. The celiac doc put me on the Fasano diet.  I did well, and there was some improvement with sleeping through the night.  Neuro symptoms were still present, and to me, seemed worse.   My brain would have a fluttering sensation at times, extreme dizziness/ lightheadedness, weakness to name a few symptoms (bone pain, back pain, arm pain etc) odd episodes where I could barely walk or speak from weakness.  My psoriasis has been very angry lately

What did I rely heavily on during the Fasano? RICE.  The week I was away at the cottage, what did I eat for almost 2 meals a day? RICE.  That was probably my worst week.

The past few days, the dizziness has returned...I had chicken coated in a heavy brown rice flour mix, and made banana bread from a rice flour blend (which I generally don't eat).  

However, I cannot really find a link with rice and neuro issues.  So maybe I am just grasping at straws here.  But it seems to be a big coincidence.  

Also, when I was extremely ill before my dx, I could barely eat or keep food in.  My neuro symptoms were off the charts then.  I lived on rice cakes......sometimes twice a day....

 

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It's possible to have a rice intolerance.  Daughter has intolerances to quinoa and flax.  Those aren't her symptoms though.  Just tummy troubles.

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It is possible.  I bloat up.  I am not sure if it is rice itself, or if wheat or corn is in my rice products.

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It could be that you've developed an intolerance. I know I have trouble with brown rice for some reason. It's more of a "gut" reaction though, but I don't see why neuro-symptoms wouldn't be possible.

I'm not sure what else you had to cut out on this diet you were doing, but are you still eating dairy, soy, corn, nightshades, eggs, which are other common intolerances? I get instant neuro symptoms with soy, a bit less so with dairy.

Rice can be hard to digest sometimes (as much as I want to eat healthier, my gut doesn't handle brown rice, quinoa, and other "whole grain" type things very well. Not sure why, but I stay away from them). Same with oats, regardless of being gluten-free or not (thankfully, I can still handle gluten-free oats)

So, rice intolerance is a definite possibility, or maybe you just need to cut back on it. Too much of anything isn't a good idea.

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That is possible, but it could be the trace contamination that the Fasano diet is supposed to eliminate.  It eliminates it by having you eat whole grain rice.  Did you grind that rice flour yourself, or did you buy it already ground?  Was it ground in a gluten and oat free facility?  In that case it is not the Fasano diet and does not reduce possibilities of trace gluten contamination.  I find that I need to source my rice carefully to have a reaction.  I could not find a rice flour that worked.  

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Its possible to have an issue with another food that has nothing to do with gluten. It may be that rice is just not for you.

However, if you were eating premade rice cakes, you probably weren't following the Fasano diet. I think it is all whole foods and no pre-made processed foods like rice cakes or flours.

Here's a brief description of the Fasano diet if people don't know what we are talking about:

http://www.celiac.com/gluten-free/blog/1038/entry-1780-the-gluten-contamination-elimination-diet-summary-of-dr-fasanos-recent-paper/

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kareng

I ate the rice cakes almost two years ago when I was severely ill.  I haven't touched them since then.  

On the Fasano I ate only 100% natural foods, fruits and vegtables.  Nothing with a wrapper, nothing touched by man.   

The one thing that increased was rice...it became the main staple.  The rice was plain and prepared in the rice cooker with olive oil and salt,

the other thing that was increased were eggs.  I ate eggs for breakfast everyday.  I followed the fasano 100% without cheating.  Dr. Fasano himself actually allowed an occasional glass of organic red wine...when i asked, he considered it to be 100% fruit juice.  

Some things got better on the fasano.  Some things got worse.  I almost feel like I am taking big steps backwards, joint pain is coming back as well.  I'm scared to death to return to where I was.  

I see Melinda Dennis, my nutritionist on Monday.  I'm hoping she can shed some light.  I have been afraid of loosing things for good, but at this point I will do anything to feel better.  I of course questioned nightshades and salycitics as well.  

When I started charting , I all of a sudden started to put things back together....and this past week, I had added more rice products (rice flour, rice pasta, actually a piece of gluten-free banana bread, with a rice based flour.  And i felt awful.  Last week was decent, but I didn't have any rice at all.   Like I said, I just started putting the pieces together.   And rice seems to be the common factor.

After the fasano, I stayed away from most packaged foods,  I felt better without...though on occasion, maybe once a month I would eat gluten free pasta, but rarely.  I found that when I would have a bite of something I baked, I felt sick.  So I stay away from it as much as possible.  I bake gluten-free treats for my children with celiacs as well.  I don't give them packaged gluten-free foods.  I make the bread when I can etc.  Or else there is no bread.  But I rather my food with lettuce anyways.  But when I bake I inhale the rice flour etc b/c it is so fine and airborne.  
Im hoping the nutritionist will take all that i say and have that AHA moment and know exactly what is going on.   It would make sence that  my body is at war still and is now attacking other things.  My ANA is still extremely high as well.   

I just want to be able to function.  To actually feel like a human.  To act and feel 40, not 80.  I want to enjoy life not watch it slip by me.

I have looked at the whole 30, and the autoimmune protocol.  I am sure some version of this is headed my way.  Funny, I was always afraid of that.   Now, bring it on....but don't take my pistachios away :o ....ok, you can take those too....just please someone figure this out! 

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kareng

I ate the rice cakes almost two years ago when I was severely ill.  I haven't touched them since then.  

On the Fasano I ate only 100% natural foods, fruits and vegtables.  Nothing with a wrapper, nothing touched by man.   

The one thing that increased was rice...it became the main staple.  The rice was plain and prepared in the rice cooker with olive oil and salt,

the other thing that was increased were eggs.  I ate eggs for breakfast everyday.  I followed the fasano 100% without cheating.  Dr. Fasano himself actually allowed an occasional glass of organic red wine...when i asked, he considered it to be 100% fruit juice.  

Some things got better on the fasano.  Some things got worse.  I almost feel like I am taking big steps backwards, joint pain is coming back as well.  I'm scared to death to return to where I was.  

I see Melinda Dennis, my nutritionist on Monday.  I'm hoping she can shed some light.  I have been afraid of loosing things for good, but at this point I will do anything to feel better.  I of course questioned nightshades and salycitics as well.  

When I started charting , I all of a sudden started to put things back together....and this past week, I had added more rice products (rice flour, rice pasta, actually a piece of gluten-free banana bread, with a rice based flour.  And i felt awful.  Last week was decent, but I didn't have any rice at all.   Like I said, I just started putting the pieces together.   And rice seems to be the common factor.

After the fasano, I stayed away from most packaged foods,  I felt better without...though on occasion, maybe once a month I would eat gluten free pasta, but rarely.  I found that when I would have a bite of something I baked, I felt sick.  So I stay away from it as much as possible.  I bake gluten-free treats for my children with celiacs as well.  I don't give them packaged gluten-free foods.  I make the bread when I can etc.  Or else there is no bread.  But I rather my food with lettuce anyways.  But when I bake I inhale the rice flour etc b/c it is so fine and airborne.  

Im hoping the nutritionist will take all that i say and have that AHA moment and know exactly what is going on.   It would make sence that  my body is at war still and is now attacking other things.  My ANA is still extremely high as well.   

I just want to be able to function.  To actually feel like a human.  To act and feel 40, not 80.  I want to enjoy life not watch it slip by me.

I have looked at the whole 30, and the autoimmune protocol.  I am sure some version of this is headed my way.  Funny, I was always afraid of that.   Now, bring it on....but don't take my pistachios away :o ....ok, you can take those too....just please someone figure this out! 

 

 

Ok.  Couldn't tell from the post.  Maybe rice just isn't for you?  At least until you are feeling better, then you could try it again.

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I agree with Karen.  Stop eating rice.  Have you been assessed for other AI Diseases?  Another member, Gemini, has a chronic high ANA and she also has a host of other AI Diseases.  My ANA is also chronically high with multiple AI Diseases.  Sometimes an ANA can be high for no apparent reason.

 

Colleen

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colleen, I have been tested for so many AIs.  Nothing has come up possitive...I actually had a Rhuemy tell me that my high ANA meant nothing.  That it was a phenomenon.  I am a 640.....it has dropped to 320 but has gone back up and never goes below.  I don't believe that it means nothing.  If I was healthy and it was high, I could see that....but there is something going on in the connective tissues.  I also apparently have a history of MGUS, which I was not aware of.  My IGM was high, though it had gone down a bit, and the hematologist said i was clear of lymphoma and multiple myeloma...but apparently this is premyeloma?  I saw that on my file...I had no idea.  

Then one dr said, just wait, nothing has come out in the blood yet.  So when do we wait until we can't wait anymore?  

This is why at this point I'm looking at the other foods.  Gluten exposures for me are killer, they last 5 weeks and I am on the couch in severe pain bone, neuro symtoms galore.   The gastro symptoms subside after a few days.  

So if gluten does this to me, there has to be an off chance that another food/grain could react as well?

For me, it may just be wishful thinking.  I know the dr.s all think it's psychosomatic or a conversion disorder.  But let  me tell you, if I wasn't so sick, I'd be having the time of my life right now.   I have so many plans of things I want to do, now my kids are a little older.  If this body wouldn't keep holding me back...it would be all good.  argh!!!

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steph, 

I didn't grind it myself...I stayed away from it completely until the past month.  It was bobs red mill.  I just remember even on the diet, I was having more severe neuro symptoms...they were bad the past few days, along with the stomach issues...It may be a huge coincidence...but it's very suspicious to me.  when i was so sick a few years back...I pretty much existed on rice....

I don't even think I want to play around with it at this point.  

I have eliminated it at least until I see the nutritionist on Monday.  I feel ok today.  Not great, but not too bad.....

The possitive things that came out of the fasano have now seemed to have disappeared slowly.  I'm up more at night once more...

I'm dying to see what they find when they redo the endoscopy in Jan...  

My dad brought up an interesting point.  Once upon a time, wheat was a staple in my diet, then when that was gone, rice became a staple...

I stay away from anything that says oat....gluten-free or not.  I react badly to gluten-free oats....sick as a dog and a total personality change...whooooaaaa...bad news

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    • Hi, Ok good advice and I am sincere when I say how much I appreciate a lot of the responses, advice and encouragement that have been posted here. I'm not sure what a nutrionist is but a dietician (here in the U.K.) is a heavily regulated medical profession and my dietician is based most of her week in a hospital where doctors and MD's as they are known refer patients to her for help. She works every day with celiacs, dh sufferers and people with crohns, ibs etc and seeing my skin, listened to what I was saying (particularly about how my redness and blisters resolved on a gluten free (though not wheat free) diet for several years, and sent a report to my doctor/MD requesting a battery of tests - tests that can indicate dh, celiac and associated complications. I also have a friend with a wheat allergy and two with celiac (all diagnosed) and they are encouraging me to go ahead with getting these particular tests. So that's great but reading the above quote that suggests that situations like sharing an oven used to cook gluten-containing pizza, should not cause a gluten reaction. I thought, my god what's the point of going through these tests if my recent reactions aren't actually to do with gluten. Although my dietician is concerned about possible dh and has been through years of medical school, I also really trust the advice of an advanced member on this site and if they think oven-sharing shouldn't cause any gluten reaction, what hope do I have with an MD? It has taken me years to pluck up the confidence to ask for any medical help because I feared that sort of response along with a focus on psychological issues and hormones etc early on in the thread (even though, I only started feeling depressed since yesterday). Actually, I'm a mental health nurse so it's good to see people are alert to these issues but I am also pretty familiar with depression and I know that many people with physical health problems are fobbed off by doctors with talk of depression, stress, and hormones. I'm sorry that I took the (above) quote to heart and I know that I allowed that to colour my perception of the whole thread, which has been helpful in many ways. Best wishes to you all, even those I didn't agree with! Rhian 
    • I thought maybe doing a trial period to see if he reacts positively to being gluten free and then adding it back to see if symptoms come back would maybe be helpful to the doctor? But I guess that's true, it might skew things regarding any future tests that might be warranted. 
    • If you haven't had her tested yet please do not go gluten free. Get the celiac testing first as if she does feel better gluten free when she has to go back on gluten for testing she may have much worse symptoms.  There will also be a higher risk of false negatives.
    • I did not mean to imply that you should put him on a gluten free diet.    If you suspect a problem with gluten, please get an opinion from a GI who is celiac savvy.  All celiac testing requires a patient to be consuming gluten.  The slightly equivocal TTG?  That warrants a gene test at the very least.   http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf  
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