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Grain Sensitivity Reality

grain sensitivity in general?

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21 replies to this topic

#1 Finally@45

 
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Posted 06 March 2013 - 04:28 PM

I remember when I first joined this group after my Celiac diagnosis, I read a post from a lady who said she couldn't tolerate any grains except for occasional white rice.  I thought to myself, bless her soul!  Well here comes another one.

 

I don't know if I'm having a bad week or what.  I had a bowl hot cereal--teff grain made with pineapples and pure brown sugar late one day.  (It tastes almost identical to pineapple upside down cake; teff hot cereal has a bready taste, and texture like rice cereal.)   Shortly after, none of my joints wanted to move and I felt whipped.  On the other hand, aspirin took it all away so I'm sure the cause was mainly inflammation.   On another day I had Udi's granola in yogurt and almost immediately the same joint pain started back up, and again aspirin took it away.  No stomach symptoms, just extreme unusual fatigue.  

 

Though I've never had a single symptom from brown or white rice, I went grain free, all natural/whole foods, for a couple of days and I've felt fabulous.   

 

In addition to Celiac, I'm completely intolerant to corn, as in I can't tolerate corn vinegar, oil, derivatives, caramel color, starch, etc. without having the same symptoms as Celiac, plus anaphylaxis from the very contact of corn on my throat.  It's immediate and scary.  My last episode was from almond/coconut milk that contained the forbidden potassium citrate.  I had had a tablespoon in my coffee.  I responded to one swallow of the coffee.

 

Could there be some reality to being grain intolerant altogether?  

 

I get the feeling the researchers should have categories for Celiacs, like diabetes type 1 and 2.  If that were the case, I think I'd be Celiac Type 10.  It seems like I keep having to adjust my diet and it takes a lot not to get depressed over it.

 

 

 

 


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Celiac & Mastocytosis

Follows a diet similar to the Paleo diet, minus high-histamine items such as

avocadoes, mangoes, papaya, berries, pork, farm-raised fish, spinach, and seeds.

No eggs or red meat either.

 


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#2 GottaSki

 
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Posted 06 March 2013 - 04:38 PM

I remember when I first joined this group after my Celiac diagnosis, I read a post from a lady who said she couldn't tolerate any grains except for occasional white rice.  I thought to myself, bless her soul!  Well here comes another one.

 

I don't know if I'm having a bad week or what.  I had a bowl hot cereal--teff grain made with pineapples and pure brown sugar late one day.  (It tastes almost identical to pineapple upside down cake; teff hot cereal has a bready taste, and texture like rice cereal.)   Shortly after, none of my joints wanted to move and I felt whipped.  On the other hand, aspirin took it all away so I'm sure the cause was mainly inflammation.   On another day I had Udi's granola in yogurt and almost immediately the same joint pain started back up, and again aspirin took it away.  No stomach symptoms, just extreme unusual fatigue.  

 

Though I've never had a single symptom from brown or white rice, I went grain free, all natural/whole foods, for a couple of days and I've felt fabulous.   

 

In addition to Celiac, I'm completely intolerant to corn, as in I can't tolerate corn vinegar, oil, derivatives, caramel color, starch, etc. without having the same symptoms as Celiac, plus anaphylaxis from the very contact of corn on my throat.  It's immediate and scary.  My last episode was from almond/coconut milk that contained the forbidden potassium citrate.  I had had a tablespoon in my coffee.  I responded to one swallow of the coffee.

 

Could there be some reality to being grain intolerant altogether?  

 

I get the feeling the researchers should have categories for Celiacs, like diabetes type 1 and 2.  If that were the case, I think I'd be Celiac Type 10.  It seems like I keep having to adjust my diet and it takes a lot not to get depressed over it.

 

 

Hello from another 10 -- seems that those of us that went undiagnosed for decades have to do a little more work than the average celiac...I've been grain and many other things free for over eighteen months and so far I have only managed a touch of white rice -- and I mean just a bite -- tried a small serving awhile back and didn't work well.

 

Good news is now that I am finally feeling like a human-being rather than human-amoeba I can finally say I don't care what I don't get to eat as long as I get to stay vertical -- I do, however, throw many teeny-tiny pity parties that I don't invite anyone to -- once in awhile my husband -- but they are a very short foot stomping session which passes :)

 

I do remain ever hopeful that I will get many healthful foods back one day....especially potato chips ;)


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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 :)


#3 1desperateladysaved

 
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Posted 06 March 2013 - 06:52 PM

I can't eat grains.  I am glad that I am not eating them.  I like to have my head clear.


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#4 Lsher102

 
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Posted 19 March 2013 - 05:55 AM

This sounds very familiar. After a lifetime of digestive problems my doctor decided to have me try gluten free.

I had a negative biopsy but he asked me to give it a try.

I felt amazing 4-5 days later. No stomach issues, no bloating and energy like I have never known.

Then I started to have setbacks. I began to notice if I ate yeast I felt bad. Then dairy seemd to be a trigger.

My symptoms have returned despite still being gluten free. Next I eliminated all processed foods and grains from my diet. No improvement.

Currently, I eat nothing but fruit, vegtables and meats. No dyes, fillers, sauces or gravy. I make my own salad dressing now. I even tried organic meats in an attempt to eat only grass fed. Nothing is helping.

Changed all personal products and makeup to gluten free products. The new makeup has helped with a constant issue with watery eyes. All my makup was Almay because it hypoallergenic but it wasn't gluten free.

Are there others out there like me that experienced relief then had the symptoms return and are unable to get relief? Or is it just me?

 

 

LS

 


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#5 dilettantesteph

 
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Posted 20 March 2013 - 06:28 AM

It seems that the people who have problems with grains are the ones who are sensitive to low levels of gluten.  There are several studies about gluten contamination of grains, Tricia Thompson did one.  I have bought many whole grain samples and sorted through them to find the occasional gluten grain.  It seems that shared fields from crop rotation, shared harvesting, storage, and transportation facilities, and well other possibilities contribute to low level gluten contamination of grains that can effect those of us who are sensitive to lower levels of gluten.

 

I don't think that it is a problem with the grains themselves.  I have, on occasion, managed to find sources of grain which I can eat without symptoms.


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#6 GFreeMO

 
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Posted 20 March 2013 - 07:17 AM

I could not agree more.  I have found this to be true as well.  Rice especially.


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#7 EricaM15

 
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Posted 20 March 2013 - 02:53 PM

I went gluten-free at the beginning of last December. I felt great afterwards, but after about four weeks, my symptoms started slowly coming back. I waited another two weeks or so to see if it would resolve on its own, and it didn't, so I eliminated grains after hearing about the possibility of secondary intolerances in Celiac patients. Turns out, I'm extremely sensitive and have numerous intolerances. I went through the same thing again with legumes, starches, sugar, almonds, and possibly nightshades (still unsure about that). I'm also intolerant of dairy, which I figured out before gluten. Some of my intolerances may be the result of the damage that was done to my body from all the years of going undiagnosed. I'm insulin resistant, so the fact that starches and sugar cause some of my symptoms to return makes sense to me. I'm just hoping that some of my sensitivities will resolve after I give myself time to heal.

 

It's possible that you're responding to cross-contamination, in which case, I'd recommend getting rice that's certified gluten-free. I've seen it in health food stores but haven't tried it myself since I'm pretty sure I'm just intolerant of grains in general. To me, it sounds like you're also grain intolerant since you're saying you felt great after going grain-free and you're sensitive to corn, but you might want to test it out with certified gluten-free products first.


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#8 GFreeMO

 
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Posted 20 March 2013 - 03:08 PM

Unfortunately for some of us super sensitives, certified-gluten free doesn't mean a thing.  We react to trace amounts.  It has things to do with storage and transport of the grain.  


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#9 EricaM15

 
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Posted 20 March 2013 - 03:28 PM

I guess that's true, but I don't know how you could depend on anything being gluten-free if that's the case.


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#10 dilettantesteph

 
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Posted 20 March 2013 - 03:29 PM

I'll second that.  Certified gluten free can still have just under 5 ppm gluten.  I know that I reacted to a tiny bite of something that was certified to under 20 ppm.  If I want to eat any substantial amount of anything, it has to have a lot less than 5 ppm.


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#11 EricaM15

 
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Posted 20 March 2013 - 03:34 PM

So what do you do then? How do you keep yourself from being glutened if you're still buying packaged foods? I don't worry about it since my diet has become limited to fruits and vegetables, but I don't know how other people manage.


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#12 bartfull

 
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Posted 20 March 2013 - 03:49 PM

Lsher102, Your post kind of got lost in this thread. You should start a new thread and introduce yourself. Tell us how long you've been gluten-free. It could be that you are still healing. A lot of us go through that "honeymoon period" where we start to feel great, only to have setbacks later. Some of us develop other intolerances. Some of us just take a lot of time to heal and feel better. Let's talk about it in a new thread. :)

 

Oh, and welcome to the forum!


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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!

 


#13 EricaM15

 
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Posted 20 March 2013 - 05:03 PM

This sounds very familiar. After a lifetime of digestive problems my doctor decided to have me try gluten free.

I had a negative biopsy but he asked me to give it a try.

I felt amazing 4-5 days later. No stomach issues, no bloating and energy like I have never known.

Then I started to have setbacks. I began to notice if I ate yeast I felt bad. Then dairy seemd to be a trigger.

My symptoms have returned despite still being gluten free. Next I eliminated all processed foods and grains from my diet. No improvement.

Currently, I eat nothing but fruit, vegtables and meats. No dyes, fillers, sauces or gravy. I make my own salad dressing now. I even tried organic meats in an attempt to eat only grass fed. Nothing is helping.

Changed all personal products and makeup to gluten free products. The new makeup has helped with a constant issue with watery eyes. All my makup was Almay because it hypoallergenic but it wasn't gluten free.

Are there others out there like me that experienced relief then had the symptoms return and are unable to get relief? Or is it just me?

 

 

LS

Sorry, I missed this post. What do you typically eat every day? How much time have you given yourself in between all these periods of elimination? You should make sure to give yourself at least 2-3 weeks. Make sure the majority of your diet is fruits and vegetables. Also, many people debate this, but I believe that eating raw fruits and vegetables is most beneficial since it doesn't lose any of the nutritional value or enzymes in cooking. Since you're recovering from Celiac, your body probably can't make the proper enzymes it needs to digest cooked food, which is why eating raw is important. Not only that, but it promotes healing. If you have trouble digesting raw fruits and vegetables, you should try making smoothies (especially green smoothies). After some time, your body should adjust to it and you'll feel great. You sound like you're about where I'm at in this. As you can see in my post above, I haven't had a lot of luck with food. Meat isn't very easy for a lot of people to digest and I personally think it's unhealthy. I'd suggest you do some research on raw veganism. It seems to be the only thing working for me, and you're almost there already--just replace the meats with raw nuts or seeds. If you have any questions, feel free to send me a message.


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#14 cavernio

 
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Posted 20 March 2013 - 05:31 PM

Cooking only makes food easier to digest, which I'm pretty sure makes some nutrients accesible, whereas otherwise they just aren't. Some nutrients will get destroyed or otherwise removed in cooking, but that's not the same thing. Certainly burnt or charred food creates free radicals, and high temp fried foods change fats from cis to trans, but that doesn't mean steaming your broccoli or baking a piece of fish bad. If you feel better only eating raw, then by all means, eat raw, but the explanation given doesn't make sense. Particularly when you need a blender to take the job of your teeth food before eating it.

Meat is easier to digest than vegetables. Fat takes while to digest though, so fatty meat would make it hard to digest. And fat is one of those things that a damaged celiac gut doesn't break down well. Nuts and seeds are high in fat.

 

More importantly, I imagine most seeds and nuts will have cc on the levels super sensitives react to.

 

Having a negative biopsy and then having poor results being gluten free, despite that you had initial good results, suggests to me that you have something besides celiac disease or gluten intolerance. What did you blood tests show? What happens if you eat gluten now? There are other digestive problems besides celiac disease and gluten intolerance. You might have a bacterial overgrowth or a yeast or parasite infection, (an infection of any of these sorts is supposed to get better when you avoid carbs, so that could explain your initial good feeling being gluten free) not to mention crohn's or some form of cancer or failing liver or kidneys.

But as also said, you might just need more time being gluten free.


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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#15 EricaM15

 
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Posted 20 March 2013 - 06:22 PM

How do all other mammals get the nutrients they need without cooking? What you're saying doesn't make sense. Fruits and vegetables in their raw form have enzymes that aid in digestion, cooked food does not. At first, it's harder to digest raw vegetables, which is why I recommended smoothies because smoothies are much easier to digest. Maybe you feel better when you eat cooked food and meat, but most people would benefit from having more raw foods in their diet. Maybe you should read about it before you start criticizing. I realize it's controversial and it goes against what you've been told all your life about food, but it works. I've been recovering rapidly thanks to the raw vegan diet and I think a lot of people could benefit from it if they'd simply try it.

 

Meat is not easier to digest than vegetables. It's dense and takes days to go through the digestive system, and I imagine it's even worse for someone with a damage digestive system. There's also an ongoing debate as to whether or not our bodies are meant to have meat (or animal products in general) in the first place. I cannot digest meat, and many other people can't either. Yes, nuts and seeds are high in fat, but they're certainly easier to digest than meat, especially if they're soaked. Someone recovering from Celiac certainly needs more fat in their diet because like you said, a damaged Celiac gut doesn't break down fat easily, but on a raw vegan diet, it shouldn't take long a person start breaking down fat once again.

 

You imagine nuts and seeds will have CC--you don't know. I eat nuts and seeds every day, I'm super sensitive, and I have no issues aside from the one time I became intolerant of almonds. You're more likely to have CC issues with roasted and salted nuts and seeds, which are less healthy.

 

Honestly, I ended up on this diet as a result of my distrust for doctors. I went 22 years without being diagnosed and was instead diagnosed with numerous other disorders that had no real treatment. I probably could have lived a very short, miserable life if I let it go on. So I don't really trust anything that doctors say in regards to diet or health. Not to say that all doctors are bad, but they really have no education in nutrition whatsoever.


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