Jump to content
Frequently Asked Questions About Celiac Disease Read more... ×
  • Sign Up
7 7
selectivefocus

Neuropathy vent/whine...why, brown rice?

Rate this topic

Recommended Posts

I get horrible neuropathy down my legs into my feet, as well as low back pain and pelvic pain. I get such similar glutening symptoms from brown rice cakes/pasta/flour and oats that I don't touch oats (even certified) and I usually don't touch brown rice either. (It is their proteins not cross contamination). That said, I am 28 weeks pregnant, and I ran out of my Simple Kneads gluten-free bread, so I started eating rice cakes as a carb alternative until my next shipment of Simple Kneads could get here. And my neuropathy is soooooo bad right now. It's like my legs and feet are half asleep with the tingling. I can't tolerate tapioca, xanthan gum, brown rice, oats...and if I don't eat enough dry carbs I end up feeling nauseous because well, I'm pregnant. Just glad my bread gets here today so I can go back to feeling well and eating my daily toast.

When I was first being diagnosed I didn't understand why my celiac allergist was so sad about not being able to eat oats. He was like "yeah, I had a salad for breakfast". In my naive little mind, I thought "surely it can't be that bad!" Celiac is such a complicated disease and sometimes I forget I even have it until I screw up. It's hard not to berate yourself and be like "well, you shouldn't have eaten that!" I just get sick of having so many food intolerances sometimes. I'm usually a look on the bright side person and thank God for potatoes (LOL) but the neuropathy is what always drags me down. 

Share this post


Link to post
Share on other sites
45 minutes ago, selectivefocus said:

I get horrible neuropathy down my legs into my feet, as well as low back pain and pelvic pain. I get such similar glutening symptoms from brown rice cakes/pasta/flour and oats that I don't touch oats (even certified) and I usually don't touch brown rice either. (It is their proteins not cross contamination). That said, I am 28 weeks pregnant, and I ran out of my Simple Kneads gluten-free bread, so I started eating rice cakes as a carb alternative until my next shipment of Simple Kneads could get here. And my neuropathy is soooooo bad right now. It's like my legs and feet are half asleep with the tingling. I can't tolerate tapioca, xanthan gum, brown rice, oats...and if I don't eat enough dry carbs I end up feeling nauseous because well, I'm pregnant. Just glad my bread gets here today so I can go back to feeling well and eating my daily toast.

When I was first being diagnosed I didn't understand why my celiac allergist was so sad about not being able to eat oats. He was like "yeah, I had a salad for breakfast". In my naive little mind, I thought "surely it can't be that bad!" Celiac is such a complicated disease and sometimes I forget I even have it until I screw up. It's hard not to berate yourself and be like "well, you shouldn't have eaten that!" I just get sick of having so many food intolerances sometimes. I'm usually a look on the bright side person and thank God for potatoes (LOL) but the neuropathy is what always drags me down. 

Baked sweet potatoes might be good, not being a nightshade they are easier carbs. But you are lucky, I had to give up all carbs. Carbs first started giving me distention and bloody stools, then later even cheating a bit spiked my blood sugar. I am now paleo/keto no carbs I eat fat for energy and my uses it instead.

Rice...rice protein sometimes even gives me edema issues with water retention. I still have it sometimes but very rare occasions.

Bread wise I was using Julian Bakery Paleo Bread, the almond bread and seed breads I still sometime order even though I own my own bakery. I often make my own with coconut flour bases as it is much cheaper to produce.
 

Share this post


Link to post
Share on other sites
8 hours ago, selectivefocus said:

I get horrible neuropathy down my legs into my feet, as well as low back pain and pelvic pain. I get such similar glutening symptoms from brown rice cakes/pasta/flour and oats that I don't touch oats (even certified) and I usually don't touch brown rice either. (It is their proteins not cross contamination). That said, I am 28 weeks pregnant, and I ran out of my Simple Kneads gluten-free bread, so I started eating rice cakes as a carb alternative until my next shipment of Simple Kneads could get here. And my neuropathy is soooooo bad right now. It's like my legs and feet are half asleep with the tingling. I can't tolerate tapioca, xanthan gum, brown rice, oats...and if I don't eat enough dry carbs I end up feeling nauseous because well, I'm pregnant. Just glad my bread gets here today so I can go back to feeling well and eating my daily toast.

When I was first being diagnosed I didn't understand why my celiac allergist was so sad about not being able to eat oats. He was like "yeah, I had a salad for breakfast". In my naive little mind, I thought "surely it can't be that bad!" Celiac is such a complicated disease and sometimes I forget I even have it until I screw up. It's hard not to berate yourself and be like "well, you shouldn't have eaten that!" I just get sick of having so many food intolerances sometimes. I'm usually a look on the bright side person and thank God for potatoes (LOL) but the neuropathy is what always drags me down. 

selectivefocus,

It sounds like you might have Pernicious Anemia (PA).

I used to have the same problems.  Get you some sublingual B-12 and see if it doesn't help your tingling limbs.

It did mine!  This is is not medical advice but I hope it is helpful.

Here is a nice overview from Webmd on tingling in hands of feet.  I will quote their information about how it can be B-12 deficiency being undiagnosed in their vitamin deficiency paragraph. Read the whole article when you get a chance to rule out other causes.

https://www.webmd.com/brain/tingling-in-hands-and-feet#1

"A B12 deficiency, for example, can lead to pernicious anemia, an important cause of peripheral neuropathy."

2 Corinthians 1: 3, 4

3 Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;

4 Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.

2 Timothy 2: 7   “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

Share this post


Link to post
Share on other sites
On 1/2/2019 at 10:49 AM, Ennis_TX said:

Baked sweet potatoes might be good, not being a nightshade they are easier carbs. But you are lucky, I had to give up all carbs. Carbs first started giving me distention and bloody stools, then later even cheating a bit spiked my blood sugar. I am now paleo/keto no carbs I eat fat for energy and my uses it instead.

Rice...rice protein sometimes even gives me edema issues with water retention. I still have it sometimes but very rare occasions.

Bread wise I was using Julian Bakery Paleo Bread, the almond bread and seed breads I still sometime order even though I own my own bakery. I often make my own with coconut flour bases as it is much cheaper to produce.
 

I would be careful of calling anyone with this disease lucky. We all have our problems. All of my children have different intolerances caused by Celiac. I can't have eggs or red meat. I have one with an anaphylactic allergy to almonds and cashews, one with a horrible soy allergy and salicylate intolerance. She misses school all the time. None of us are lucky, we just cope.

Share this post


Link to post
Share on other sites
On 1/2/2019 at 6:20 PM, Posterboy said:

selectivefocus,

It sounds like you might have Pernicious Anemia (PA).

I used to have the same problems.  Get you some sublingual B-12 and see if it doesn't help your tingling limbs.

It did mine!  This is is not medical advice but I hope it is helpful.

Here is a nice overview from Webmd on tingling in hands of feet.  I will quote their information about how it can be B-12 deficiency being undiagnosed in their vitamin deficiency paragraph. Read the whole article when you get a chance to rule out other causes.

https://www.webmd.com/brain/tingling-in-hands-and-feet#1

"A B12 deficiency, for example, can lead to pernicious anemia, an important cause of peripheral neuropathy."

2 Corinthians 1: 3, 4

3 Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;

4 Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.

2 Timothy 2: 7   “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

Posterboy,

Stop spamming everyone's posts with "I think you have pernicious anemia". You have also messaged me and probably everyone else saying they have that. Neuropathy caused by gluten exposure (or similar proteins i.e. oats or brown rice) is a real thing. It doesn't mean I don't process B12. I have anemia, the regular old iron deficiency kind, and have been tested several times. My B12 is fine. I am not diabetic.

  • Like 1
  • Upvote 1

Share this post


Link to post
Share on other sites

selectivefocus,

I was just trying to provide a quick answer and PA is a common cause of Neuropathy.

Beri Beri is commonly diagnosed in those who consume alot of rice in their diet can also cause similar symptom's.  A lot of things can ... really.  I went for the easy answer.  If you had PA you probably also have elevated Homocysteine levels the neuropahty in my limb/finger/legs/toe tingling got better when I got my homocysteine under control.

Again I hope this is helpful but it is not medical advice.

Posterboy,

Share this post


Link to post
Share on other sites
Posted (edited)
17 hours ago, selectivefocus said:

 

 

16 hours ago, Posterboy said:

selectivefocus,

I was just trying to provide a quick answer and PA is a common cause of Neuropathy.

Beri Beri is commonly diagnosed in those who consume alot of rice in their diet can also cause similar symptom's.  A lot of things can ... really.  I went for the easy answer.  If you had PA you probably also have elevated Homocysteine levels the neuropahty in my limb/finger/legs/toe tingling got better when I got my homocysteine under control.

Again I hope this is helpful but it is not medical advice.

Posterboy,

Pernicious anemia is easily diagnosed ( by a doctor) from routine blood work.  So, I am guessing, that if that is the type of anemia this poster had, they would know that.  It can’t be diagnosed over the internet by patient- reported symptoms.  

However, whichever anemia they have ( I am not certain if we know that?  I would need to go back and see if they mentioned it) , the treatment is basically the same and will be managed by the patient and the doctor.

Edited by kareng
having problems seeing the whole post on my phone

Share this post


Link to post
Share on other sites
20 hours ago, selectivefocus said:

I would be careful of calling anyone with this disease lucky. We all have our problems. All of my children have different intolerances caused by Celiac. I can't have eggs or red meat. I have one with an anaphylactic allergy to almonds and cashews, one with a horrible soy allergy and salicylate intolerance. She misses school all the time. None of us are lucky, we just cope.

Congratulations on your pregnancy!  I sure hope you get your bread soon! 😊 I recall consuming Ritz crackers while pregnant.  Afterwards, I could never eat one again because I associated it with nausea.  Now, I can not eat a Ritz cracker because of the gluten.  😩

I think “lucky” has a different perspective from Ennis who has both celiac disease and Ulcerative Colitis.  He has worked hard to manage both conditions by tweaking his diet.  

 

Share this post


Link to post
Share on other sites

Hi SF,

It's not a bad thing to avoid rice.  There were articles about rice in the U.S. having somewhat elevated amounts of arsenic in it a while back.  There were even articles about rice and the celiac disease tie-in since people with celiac sometimes eat more rice than the average person.  So they are more exposed to it.  I don't know if that could have anything to do with your neuropathy though.  Rice is used in a lot of gluten-free baked goods.

People with celiac sometimes develop gluten ataxia also.  Gluten ataxia causes damage to the brain.  It's an immune response.

This Livestrong article touches on several different possible causes or contributors to neuropathy.  Something in it might strike a chord for you?  I hope you feel better soon.

https://www.livestrong.com/article/474218-foods-that-aggravate-peripheral-neuropathy/

Share this post


Link to post
Share on other sites
Posted (edited)

Congratulations on your pregnancy. Yes, neuropathy is awful,ataxia, err in fact most of our symptoms and the worst combined at once. I hope you find which foods work for you during this time. You are remembering your vitamin? No vomit able to stay down? As an undiagnosed celiac at the time, with my son I was given extra folic acid in addition to my prenatal . I was on a BRATT diet as well as I was vomiting after every meal, nauseous all the time, my neighbors were concerned as I was losing weight. Oops it was several more years until diagnosis. Rearview mirror now, but boy it certainly ALL makes sense now.

I'm glad you're  diagnosed and under care during this special time. We are here for you during those tough days neuropathy and all. Even as strict gluten-free since my gluten challenge in 2016, I still occasionally get neuropathy and must remember my b vitamins from food and supplements. If not my body tells me. 

Good luck 

Edited by Awol cast iron stomach
Autocorrect incorrect

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
7 7

×