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Grain Sensitivity Reality

grain sensitivity in general?

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#16 dilettantesteph


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Posted 21 March 2013 - 09:02 AM

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.


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#17 cavernio


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Posted 22 March 2013 - 07:11 AM

-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 shit 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.

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



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Posted 22 March 2013 - 11:39 AM

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.



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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    "The past is the past...I've got places to be."

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Posted 22 March 2013 - 12:01 PM

Hi Lori!


go to the main forum page -- this one -- http://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.



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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


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

"LTES" a Gem :)



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Posted 05 April 2013 - 04:02 AM

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?
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Posted 07 April 2013 - 08:30 AM

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!

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Healing little by little. Functional Medicine is helping.
2015: Celiac dx, sleep apnea, chronic dehydration/malabsorption. Receiving Vit D treatment +iron, IV nutrient therapy, CPAP
Year 2: Mental clarity improving (and year 3 still improving!)
October 2013-14: low heart rate, low BP, arrhythmia = better! '15
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope
2006-2012: Multiple unexplained illnesses; 2009: anemic; iron infusions
2005: undx celiac crisis, 2 months of hell & never to return to normal



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Posted 24 April 2013 - 06:11 AM

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. 

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