Grain Sensitivity Reality

[Finally-45]

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.

 

 

 

 

[GottaSki]

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

[1desperateladysaved]

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

[Lsher102]

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

 

[dilettantesteph]

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.

[GFreeMO]

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

[EricaM15]

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.

[GFreeMO]

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.  

[EricaM15]

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

[dilettantesteph]

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.

[EricaM15]

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.

[bartfull]

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!

[EricaM15]

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.

[cavernio]

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.

[EricaM15]

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.

[dilettantesteph]

A negative biopsy does not mean that you aren't reacting to trace gluten as a super sensitive.  If you read the study that I posted recently about that in the super sensitive section you will see that some participants had negative biopsies but symptoms at the start of the study.

https://www.celiac.com/forums/topic/100327-trace-gluten-responsible-for-ongoing-symptoms-study/

[cavernio]

-Every animal is different. Some animals digest things we can't and vice versa, and some will have internal mechanisms to make nutrients for themselves from other things they ingest. That's about the worst argument I have ever heard for vegetarian or veganism. It would have weight if it looks into the mechanisms of food digestion and use and explained itself with some sort of proper research. 

-Meat will definitely take longer to go through your system because there's little fibre, which is what vegetables are so high in. Fibre specifically isn't digested. If you're saying you don't digest meat easily because you don't s$#& it out quickly, then you don't understand basic physiology.

-Vegetables are full of water-soluble nutrients that will get picked up if needed at that point in time, but the rest gets filtered out in urine. Fat soluble nutrients can get stored in your liver though, and you can build up stores of them, so it's not as important to eat fat soluble nutrients regularly. That's why it's important to eat a lot of vegetables regularly. That's why it's hard to overdose on water-soluble vitamins. Also why, after a few years if you stick to this raw food diet, you will probably start to feel worse again, probably in different ways, as you get low in nutrients that are found more in meat, unless you supplement. My 'traditional' knowledge of nutrition specifically supports the idea that a diet much higher in vegetables, or even devoid of meat or other animal products, can be good for you for a period of time. It's the longterm that I have doubts about.

-I can't find any raw nuts locally that 1) say they might not have traces on them or 2) have given me a reaction. All of the baked and coated ones say they may contain traces of wheat. I'm considering ordering nuts that say they're safe. In regards to the ones you eat always being safe, that's awesome if they are. But keep in mind that there've been lots of posts about inconsistencies in people's reactions to gluten. You can't necessarily trust your body to let you know, so I hope you're eating ones where the manufacturer says they're safe.

-Every doctor has more training than you do in terms of food and nutrition (unless you're a nutritionist). Not being able to diagnose your celiac disease doesn't make a doctor completely clueless in terms of what you should or shouldn't eat, rather, I think it shows a very serious problem that medicine, as it is currently practiced, faces. There's an overload of information that any 1 doctor has to know, (and it's just getting worse as we learn more and more) and so any disease that isn't super common or that doesn't have unique presentations, (celiac disease is neither) are going to be overlooked. It really is a societal problem, not a lack of information problem. That you found information to clue you into trying a gluten free diet without a doctor's help is a good thing, not a bad one, but it's going to bite you right back if because of that you discount all the knowledge that professionals have about nutrition because they didn't realize 1 thing about you.

 

My personal view is that there is no optimal diet for people.There is no miracle food. Everything we eat is helping us live but can also have a downside. We're miracles of evolution and our body is in a constant struggle to stay alive. Food that keeps us alive will eventually kill us, that's life. Evolutionarily speaking, a diet that would kill us after reaching a somewhat old age but allows for lots of energy and health before that age, would probably be what we've got an affinity for, since evolution works specifically and only through procreation. Once you're too old to procreate, you've got to be pretty damned helpful to society in order for what's best for an old person to have any sort of evolutionary physiological impact.

[Lsher102]

Thanks for the welcome. I have never been in a forum before. I am clueless as to how this works.

Kindly show me the ropes so I know how to start a new thread.

I work in technology but am dreadfully un-informed when its come to social media. I'm not even on Facbook. I know hard to beleive there are still some prople not using it.

My name is Lori. I am 53 and just started gluten free in December of this year. I live in NJ. And I seem to be sensitive to everything under the sun.

 

LS

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!

[GottaSki]

Hi Lori!

 

go to the main forum page -- this one -- https://www.celiac.com/gluten-free/

 

then choose a catagory -- like cooking, pre/post diagnosis questions -- click on one of those

 

then click on "start new topic"

 

and you'll be off and running.

 

Also -- you can click on "View New Content" on the top of the page and it will give you a list of everything folks are currently chatting about...

 

Don't worry too much about keeping things orderly for now -- just join in where ever you'd like.

 

Welcome!!!

[wartburg03]

Grains in general are inflammatory. Like you, I react to corn as well as gluten, but when my blood sugar was out of whack I reacted to all grains. After going on a sugar control diet (fruits, veggies, meat, and whole milk only) for about 2 months, I am back to only reacting to corn and gluten and back to eating other foods. Maybe it's something that would work for you?

[CaliSparrow]

Yes, I have broken through the clouds feeling better and then have to hunt for the new offender. As GottaSki has said, for those of us that had symptoms for years prior, we can take a long time to heal. But look at her, she's SKIING!

I just went grain-free a few days ago & felt good yesterday. Last night, I had a few spoonfuls of Coconut Bliss ice cream (gluten-free, soy-free, dairy-free) & am not optimal today. Hubby feels same way. It has guar gum, xantham gum & rice flour (the only things I found that could be suspect. Oh, plus 17 grams of sugar!

So, it's right back to Paleo for me.

The best thing you can do is keep a food diary & write down your symptoms. It helps develop our skills of listening to our bodies. I can't speak for anyone else here but that's a skill I shut down along the way. Seeing the diets "normal people" eat, I can't imagine I'm alone on that one!

Good luck!

Cali

[louisewheatfree]

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.

I am allergic to gluten. I will not buy any food classified as "gluten-free"  I was at our food co-op  and looked at some "gluten-free" cracker/snacks.  The first ingredient listed was corn starch, so I put it down.   I feel very best with no grains at all and with no processed  foods  at all.  If I eat any of the processed foods I can feel it right away.  I don't know what is in them, but it doesn't work for me.  So for two months now I am doing no processed food and no grains and I'm telling you it has made a new person out of me.  That means that everything I eat has to be made by me at home.  It is a bit time consuming and complicated at first but a I symptom free.