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Am I Reacting To Rice?


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#1 dinosinclair

 
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Posted 02 September 2012 - 09:24 AM

hello everyone:
I'm a newbie. I had the test with a camera down my throat which confirmed I'm highly sensitive to wheat. Eleven months diagnosed with celiac diseas and still coping with trying to figure out the puzzle and get my digestive system "normal." I feel very similar to chamomilelovers post.
Just when I think I have things under control; something hits me. -up at 3 a.m with "d" not constipation, stomach pain, headache, insomnia, and looking through my notes.
I have been living on "gluten free" rice Chex -coconut milk- boiled rice, meat, vegetables,fruit. Then; just as my digestion turns normal, I get hit with a new mystery of what I ate that caused a relapse.
Then I had another allergen test from my blood which tested for a reaction to the days food in different categories. Category 3 being most dangerous--(and a no no) wheat, and rye -which i already knew- but also egg yoke, egg whites, soybean came in at this level 3- casein, rice, and barley came in at class 2--and oat and corn class1. The nutritionist advised me that this information was all in regard to "one day"and to continue eating normally but slowly eliminating each one (other than wheat or Rye) to see how I felt.
After much pain and experimentation -- I looked at the chart and thought "wait a minute-- rice and barley are both category 2 and I would never eat barley; why is it ok to eat rice!
Rice was the last thing I would consider a problem--I even looked at the rice package to check if it was manufactured in a gluten free environment--MY rice cakes were certified no GMOS, made in gluten-free facility-I looked at my Rice checks cereal box each morning with big letters 'GLUTEN FREE" PROUD SPONSORS OF CELIAC SPRU FOUNDATION. (although I called the company to confirm their processing in a gluten-free facility to find only their cake mixes are!)
So today I work on -and share -this piece of the puzzle eliminating RICE -- I will report how I feel and would like to hear from others,.
All along rice was considered safe to me-- With hindsight Was it the times I felt better and felt on my way to controlling the disease; where coincidently the day I didn't happen to eat boiled rice or rice Chex or rice cakes. I even thought the peanuts in the peanut butter that I had put on my rice cake might have been cross contaminated. All along I have been looking to other things--which are important--CROSS CONTAMINATION--PROCESSING FACILITIES- VITAMINS, ETC. Which I too have been very careful with. Yet it might be a simple basic I have considered safe an have been eating now and then-which throws me off on a viscious cycle of looking at other food!
thanks for listening. I does feel lonely --fumbling around at three a.m. sick again and trying to figure out what went wrong when I was so diligent and so good.
we can all help each other by trading pieces of our puzzle we works to put in place.
Wishing everyone the good health we work so hard for.
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#2 rosetapper23

 
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Posted 02 September 2012 - 11:18 AM

From my own personal experience, I began to react badly to rice after being gluten free for seven years. The symptoms were identical to the way I react to gluten, so I was mystified at first. However, from my readings, I learned that the body can begin to misidentify certain foods as being gluten (cross-reactivity), and although there are a number of posters on this forum who do not subscribe to this theory, all I can say is that I experienced it firsthand. I removed rice from my diet for six months, and when I reintroduced it, my body no longer reacted to it. Many people have mentioned removing dairy, rice, or other foods from their diet temporarily....and when the offending food is reintroduced 3-6 months later, they no longer react to it. I think it has something to do with the autoimmune system going a bit haywire and getting confused.

I hope you're not eating soy--many celiacs can't tolerate it. You might consider trying the paleo/primal diet for a while to heal your gut. It doesn't allow grains, and it's the diet I followed that helped me get over the rice sensitivity. There are several good books ("Primal Body/Primal Mind" by Nora Gaudgedas and another book by Mark Sisson) on this diet, and a number of celiac.com posters follow it.
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#3 bartfull

 
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Posted 02 September 2012 - 11:50 AM

Did you switch to a different brand of rice? I ask because I was recently glutened by some store brand rice that it turns out, was made in a facility that processes wheat. I used to use Uncle Ben's and never had a problem, but the store was out and I bought this other stuff instead. There was no warning on the label, but after I got sick I went to their website and there it was.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#4 Juliebove

 
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Posted 02 September 2012 - 02:51 PM

What kind of allergy test was this? IgG? IgE?

And yes, cross contamination could be a problem with the rice if you bought a different brand.

But if the test is showing an allergy then you need to avoid rice.
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#5 Lori2

 
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Posted 02 September 2012 - 07:00 PM

Rice was the mainstay of my diet. I cooked up a batch of brown rice pilaf every day and ate rice cakes--no cereals. And like you, I eliminated everything--different foods, supplements, etc. Imagine my surprise when testing (EnteroLab) said that rice and oats (I used very little oats) were the cause of my diarrhea. The day I quit rice, I used 4 Immodium. In the six months since I have used a total of three Immodium.
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#6 dinosinclair

 
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Posted 06 September 2012 - 07:44 AM

Thank you. It really does help to have the advice of others.

Has anyone gone through a strict elimination diet and found surprise culprits. Can you share the constant items you ate in your elimination diet?
Wondering how long, and your experience with it.

Us newbies need to hear more healing stories and successes ... to keep us going.

I'm working on an elimination diet of giving up all grains, even potatoes and corn as an elimination diet - NO PROCESSED FOOD IN A PACKAGE OR CAN- (even those labeled gluten free) only broiled meats fish and chicken, fruits, vegetables,
No dairy, soy I learned early on that dairy and soy got me really sick. Eggs are now suspected.

Canít give up morning black tea with sugar and coconut milk that is pure except for guar gum; that I heard can act as a laxative.
The one thing I love in the summer is a glass or two of wine on the deck. I keep reading wine is OK and so it is the final thing and hardest to give up for a while since it has been consistent in my diet from diagnosis. I replace wine with pure grape juice in a wine glass for now.
My husband is very supportive, yet he doesn't give up wheat; or beer. I'd be the same if the situation were reversed. He keeps me honest and works on cross contamination vigilantly.
IT'S ONLY BEEN TWO DAYS on the elimination diet---(eleven months working on recovery) My body won't let me cheat though. As I'm sick and tired of getting sick and tired and that's what my gut throws back at me when it doesn't like what I ate. It's telling me to get out of denial and; that I have a DISEASE, and that the bad stuff is "OUT".
The good news is that in exchange for that I'm rewarded with: Energy galore; hip pain, and anemia gone...best part shrunken belly!!!! Even though I have not lost weight.
I gained weight. Which is another puzzle. -It's probably from the many delicious replacements for wheat based breads and sweets I discovered and was anxious to try them all.
Some things I don't ever want to eat again considering how sick I got: Wheat (of course) - Soy, Cheese,
So if I ever get back to normal--- I will carefully introduce back one item at a time like eggs, rice, gluten-free flours in breads, etc. saving wine for last.
I still get migraines; and on and off bouts with "D" insomnia which is slowly going away.
I feel if I can stick with an elimination diet, it will help in feeling so much better in mind and body.

At the end of the day I thought, No one wants this sickness, of course, but; t's not a totally evil disease. It forces us to listen to our bodies, take good care of ourselves, and regenerate into healing and feeling better.
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#7 GottaSki

 
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Posted 06 September 2012 - 08:01 AM

Good Morning-

Here is a link that explains my strict elimination diet experience. I had better health then EVER in my life for about eight months. I did have a autoimmune type flare a few months ago that has been a huge set back, but this information remains relevant as I can not yet eat any of the items I removed from the experiment.

There were many surprises in what foods were causing me problems - if I wasn't clear in the post - I believe it quite important to return to your base foods after each trial so that you are experimenting with the same conditions each time you trial. I did add eggs and occasional rice (maybe once per month) -- it is interesting to me that my flare happened within two months of added the foods back that I found to be safe/no reactions.

Well, here it is - I do not regret a minute of the strict elimination diet and wish I would have tried it much earlier. For two years I tried removing one item at a time with food journal and had no luck - when you read the post you'll see why I never would have found a pattern:

http://www.celiac.co...-success-story/

Good luck with your puzzle - it can be extremely complex - I applaud your effort to find the solution!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 Aussie76

 
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Posted 07 September 2012 - 10:09 AM

Hello dinosinclair!

I'm do glad that you've brought your concerns and struggles out in the open. I'm having exactly the same problems as you described. It's so frustrating (as you know)! Only a few weeks ago I was feeling the best that I'd felt in years but now I've gone backwards again & I have no idea why?! Just when you think you have everything figured out something sneaks up on you.

I hope that you feeling better!
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#9 dinosinclair

 
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Posted 08 September 2012 - 07:08 AM

Good Morning-

Here is a link that explains my strict elimination diet experience. I had better health then EVER in my life for about eight months. I did have a autoimmune type flare a few months ago that has been a huge set back, but this information remains relevant as I can not yet eat any of the items I removed from the experiment.

There were many surprises in what foods were causing me problems - if I wasn't clear in the post - I believe it quite important to return to your base foods after each trial so that you are experimenting with the same conditions each time you trial. I did add eggs and occasional rice (maybe once per month) -- it is interesting to me that my flare happened within two months of added the foods back that I found to be safe/no reactions.

Well, here it is - I do not regret a minute of the strict elimination diet and wish I would have tried it much earlier. For two years I tried removing one item at a time with food journal and had no luck - when you read the post you'll see why I never would have found a pattern:

http://www.celiac.co...-success-story/

Good luck with your puzzle - it can be extremely complex - I applaud your effort to find the solution!


I visited your linked page--thank your for sharing your valuable hindsight "which is always 20 20!" And shedding some new light- the sunflower seeds! I'm not going to take a chance on those then--and I had the same reaction as you to peanuts--could it have been the nuts themselves being cross contaminated. I have been adding a handful of pistachios roasted in the shell with no bad reaction ; called the company before and they only process pistachios in their plant. Same BAD reaction as you to SOY- & CORN (chips and on the cob) that was strange because corn came out ok in my blood tests for allergens.
sticking to the elimination diet and feeling much better--still flair ups though (only 4 days into it) I will also eliminate night shade veggies-

be well.
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#10 dinosinclair

 
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Posted 08 September 2012 - 07:20 AM

From my own personal experience, I began to react badly to rice after being gluten free for seven years. The symptoms were identical to the way I react to gluten, so I was mystified at first. However, from my readings, I learned that the body can begin to misidentify certain foods as being gluten (cross-reactivity), and although there are a number of posters on this forum who do not subscribe to this theory, all I can say is that I experienced it firsthand. I removed rice from my diet for six months, and when I reintroduced it, my body no longer reacted to it. Many people have mentioned removing dairy, rice, or other foods from their diet temporarily....and when the offending food is reintroduced 3-6 months later, they no longer react to it. I think it has something to do with the autoimmune system going a bit haywire and getting confused.

I hope you're not eating soy--many celiacs can't tolerate it. You might consider trying the paleo/primal diet for a while to heal your gut. It doesn't allow grains, and it's the diet I followed that helped me get over the rice sensitivity. There are several good books ("Primal Body/Primal Mind" by Nora Gaudgedas and another book by Mark Sisson) on this diet, and a number of celiac.com posters follow it.


Thank you.
I have a friend who is a holistic chef and she recommended the primal diet early on--seems like what I'm doing meat, fruit, veggies...but I might look further into this. It might be part of a new theory she told me about that you should eat according to your blood type! According to mine which is the most common (0 positive) I should eat only meat an vegetables --no grains at all. I did not know I had celiac disease at the time; so it seemed interesting- but had no desire to become a 21st century hunter gatherer---
And here I am---things change!
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#11 dinosinclair

 
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Posted 08 September 2012 - 07:27 AM

Did you switch to a different brand of rice? I ask because I was recently glutened by some store brand rice that it turns out, was made in a facility that processes wheat. I used to use Uncle Ben's and never had a problem, but the store was out and I bought this other stuff instead. There was no warning on the label, but after I got sick I went to their website and there it was.


I'm eliminating rice right now..that's one thing I love to eat--and as I return to "normal" from my elimination diet; I will have to scrutinize the type of rice I might add for CC before I try it. I had also bought wild rice (black) and red rice. so I'm looking forward to reintroducing rice if I can.
has anyone had the experience of different rices on their system, i.e.: white, black, red, brown?
thanks for your help
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#12 dinosinclair

 
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Posted 08 September 2012 - 07:43 AM

Rice was the mainstay of my diet. I cooked up a batch of brown rice pilaf every day and ate rice cakes--no cereals. And like you, I eliminated everything--different foods, supplements, etc. Imagine my surprise when testing (EnteroLab) said that rice and oats (I used very little oats) were the cause of my diarrhea. The day I quit rice, I used 4 Immodium. In the six months since I have used a total of three Immodium.


Interesting. I had the same reaction to Oats even though it was organic and processed in a wheat free facility.
My villi are seriously destroyed (doc showed me the pictures) So sometimes I think it might be the TEXTURE of an offending food that our digestive system can't handle until it gets stronger. Like corn kernels cooked,or popped corn-Oats-beans-even rice. I had been eating rice cakes---package had all the bells and whistles--ingredients-just rice-non gmo-gluten free-gluten free facility---yet I still got sick. So all these things have ROUGHAGE in common.
"Nobody told me there'd be days like these." (John Lennon song)
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#13 GottaSki

 
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Posted 08 September 2012 - 08:26 AM

I visited your linked page--thank your for sharing your valuable hindsight "which is always 20 20!" And shedding some new light- the sunflower seeds! I'm not going to take a chance on those then--and I had the same reaction as you to peanuts--could it have been the nuts themselves being cross contaminated. I have been adding a handful of pistachios roasted in the shell with no bad reaction ; called the company before and they only process pistachios in their plant. Same BAD reaction as you to SOY- & CORN (chips and on the cob) that was strange because corn came out ok in my blood tests for allergens.
sticking to the elimination diet and feeling much better--still flair ups though (only 4 days into it) I will also eliminate night shade veggies-
be well.

Peanuts were gluten free and reaction was completely different from my gluten reaction.

I've NEVER tested positive on any skin, IgE or IgG blood tests for food -- yet I have severe reactions. Part of the reason this is so difficult to figure out.

Once gluten-free I was eating quinoa with peas and red peppers quite often at work and regularly had peanuts at my desk. With four different reactions at the same time there is no way to figure it out unless you remove all possible intolerance at once.

Good Luck - hope you are feeling better soon!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#14 dinosinclair

 
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Posted 08 September 2012 - 08:32 AM

What kind of allergy test was this? IgG? IgE?

And yes, cross contamination could be a problem with the rice if you bought a different brand.

But if the test is showing an allergy then you need to avoid rice.

I'm sorry that I can't be more helpful on the kind of test. I had so many. The doctor took a blood test to test for common allergens. I was in shock when she called and told me all the foods that came in which I was highly allergic to - but that it was not all conclusive and the results could be different the next day. I could continue to stay on a regular diet (minus gluten) but each week I should give up one item for two days and see how this affects my system. Made no sense as my system was still in a state of disarray.
I know now to stay away from--Wheat, Soy, Chocolate, Casein (protein in milk) . Still working on egg (yokes and whites) rice (which came in the same level as barley) . strangely enough oats and corn came in as fine to eat---both make me sick!
back to the puzzle
There is another test I've been reading about that one can have in place of an elimination diet.
I'm going to see if my insurance covers it; and if I can get a script for it from my doctor.
It's a test for guten cross reactive foods. I'm going to find and post the link which further describes this test and the theory which goes something like this:
immune system recognizes SHAPES of things it encounters in the body.
A gluten sensitive person's immune system has become sensitive to the SHAPE of a gluten molecule.
unknown why, immune system mistakes other molecules with a similar shape to gluten molecules and reacts the same way to them as if they were gluten. There may not be gluten antibodies present in the body, but similar antibodies are causing the same reaction!
These are the 18 cross reactive foods listed which have similar shapes to the gluten molecules
--some considered safe on our gluten lists--and are also ingredients in gluten free recipes.

Cows milk, Rye, Quinoa, Casein, Barley, Yeast, Casomorphin, Polish Wheat, Tapioca, Milk Butyrophilin, Buckwheat, Oats, American Cheese, Sorghum, Coffee, Chocolate, Millet, Corn, Sesame, Spelt, Rice, Hemp, Amaranth, Potato.

I think I see a pattern emerging here for myself.
Has anyone had this test? It's performed by Cyrex Labs.
rather than risk losing this long post I will type exactly the web page at the bottom of my printout for you to visit which is a more detailed explanation and it shows the shapes of these food molecules in comparison to gluten molecules.
Rather than an expensive test--we could all give up these cross reactive foods--and see what happens!
(I think I've given up half already!!!!)

http://blog.primohea...-Reactive-Foods

Take care
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#15 dinosinclair

 
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Posted 08 September 2012 - 08:35 AM

Hello dinosinclair!

I'm do glad that you've brought your concerns and struggles out in the open. I'm having exactly the same problems as you described. It's so frustrating (as you know)! Only a few weeks ago I was feeling the best that I'd felt in years but now I've gone backwards again & I have no idea why?! Just when you think you have everything figured out something sneaks up on you.

I hope that you feeling better!

You too,
I posted a link to a test for cross reactive foods on a previous post.
It might help in working on your puzzle.
I always feel a bit better when another puzzle piece slips into place!

take care
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