It's Not Just The Gluten!

[Guest AlabamaGirl]

I won't go into my long story how I've slowly figured out what is causing my hives, mouth ulcers, etc, etc, etc, but I have thought for months now that I only had a gluten intolerance. This past weekend, I discovered Pamela's cookies at my local health food store and after eating a couple, I thought that I had gotten glutened. Those couple of cookies resulted in exactly the same symptoms that gluten (or so I thought) would cause.

I reread the ingredient listing and noticed the rice flour and assumed that it couldn't be that (though I'm not much of a rice eater and rarely eat it), and went about my business. Next day I ate a rice tortilla (trying new stuff lately ...) and had the same reaction. This morning I tried buckwheat cereal and almost cried it was sooooo good and I haven't had grains in soooo long. I am now sitting here typing this with hives all over my stomach and back ...

SO IT'S NOT GLUTEN!

(Uh, or is it?)

My questions:

Is there such a thing as an intolerance or allergy to all grains?

If so, is there a name for this issue? Can I be tested for it?

And are there any other foods that could be related and cause the same reaction?

I would so appreciate any input and advice! Feeling really ... I guess the words is tired over this entire matter and just want to know what in the heck is wrong with me!!!

[BRUMI1968]

what about beans? do you alright with them?

[Guest AlabamaGirl]

what about beans? do you alright with them?

I think I'm okay with beans, but then again, I never thought I'd have a reaction to RICE.

[jerseyangel]

I get gluten-like reactions from grains, but they take longer to show up. What is probably happening is that I can tolerate a certain amount, and after that, it begins to make me sick. I just avoid grains.

Corn (which is also a grain) affects me right away.

I was tested for true food allergies (skin scratch testing). Negative to everything. The allergist suggested an elimination diet to figure out the cause of my lingering symptoms. The results (which took about 7 months) are in my signature.

My suggestion to you would be to find an allergist who deals with food allergy/intolerance. Not all allergists do, you may need to call around a little bit.

[Guest AlabamaGirl]

I was tested for true food allergies (skin scratch testing). Negative to everything. The allergist suggested an elimination diet to figure out the cause of my lingering symptoms. The results (which took about 7 months) are in my signature.

How did you do your elimination diet?

[jerseyangel]

How did you do your elimination diet?

It was kind of my own version

I ate very plainly--meat, chicken, veggies, bananas, water and tea until I felt better. Then, about once a week, I tried one new food at a time. I kept a written log of what I ate and how I felt each day--it's easier to see a pattern that way.

Several times, I tripped myself up by adding too many new things at once. I had to get back to "square one" and keep at it!

[CantEvenEatRice]

I think you can definitely be intolerant to all grains. I have been on the gluten free diet for 3 years now and did feel better than before the diet, but never as good as I thought I should. Slowly I have realized that many foods are giving me the same reaction, especially grains. I actually get the strongest reaction from rice now. I kept thinking, "how can I not tolerate rice?" Practically everything gluten free is made with rice! I am going to stay away from all grains from now on. I wish they would do more studies on all of this because I find it very interesting that so many Celiacs have trouble with way more than just gluten!

[BRUMI1968]

I don't eat grains at all, or beans, dairy, starchy veggies/fruits. When I quit the grains, I thought I wouldn't be able to get enough fiber, but most days I have been great. I't's been two months now w/o grains.

I had an allergy panel run recently as well, and everything came back negative, including wheat and gliadin, which I thought was funny.

Anyway, I hope you figure it out. You certainly don't need to worry about quitting grains. They are on the bottom of the food pyramid, but not rightfully so - they are not nearly as dense nutritionally as veggies.

Take care.

[mle-ii]

I don't eat grains at all, or beans, dairy, starchy veggies/fruits. When I quit the grains, I thought I wouldn't be able to get enough fiber, but most days I have been great. I't's been two months now w/o grains.

I had an allergy panel run recently as well, and everything came back negative, including wheat and gliadin, which I thought was funny.

Anyway, I hope you figure it out. You certainly don't need to worry about quitting grains. They are on the bottom of the food pyramid, but not rightfully so - they are not nearly as dense nutritionally as veggies.

Take care.

What kind of allergy panel came back negative? Was it Skin or Blood, was it IgG, IgA, IgE or other? What lab? Just curious.

[BRUMI1968]

It was for ninety-six foods maybe; it was IgG and IgE, and it was a lab in Seattle, I forget what is' called but can look later for you. I'm off to Vancouver BC for the day, and now that I've researched restaurants, I'm off! Take care.

[rinne]

This past weekend, I discovered Pamela's cookies at my local health food store and after eating a couple, I thought that I had gotten glutened. Those couple of cookies resulted in exactly the same symptoms that gluten (or so I thought) would cause.

Alabama Girl I've had the same reaction after indulging in store bought gluten free treats. I do much better with home made baking.

I have read that the proteins in buckwheat and quinoa and maybe amaranth mimic the proteins in wheat, barley and rye and can cause a reaction. I can't eat buckwheat or quinoa either although I still seem able to tolerate rice.

I also wonder about the sugar, I know it causes me problems and when I bake I use maple syrup.

Basically it seems the more processed it is the less I am able to tolerate it.

[ms-sillyak-screwed]

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[Ursa Major]

Check out the link in my signature on lectins. Maybe that will give you some clues. By the way, buckwheat is NOT a grain, but a seed.

I get almost the same reaction to rice as I do to gluten grains. I am intolerant to all grains, but also to all starches (reaction not as bad, and tolerated once in a while), as well as eggs, legumes, dairy and nightshades, all lectin foods.

[lorka150]

I react to rice and buckwheat, but not to quinoa or amaranth of corn. Try some others and see how you feel.

[Guest AlabamaGirl]

Alabama Girl I've had the same reaction after indulging in store bought gluten free treats. I do much better with home made baking.

I have read that the proteins in buckwheat and quinoa and maybe amaranth mimic the proteins in wheat, barley and rye and can cause a reaction. I can't eat buckwheat or quinoa either although I still seem able to tolerate rice.

I also wonder about the sugar, I know it causes me problems and when I bake I use maple syrup.

Basically it seems the more processed it is the less I am able to tolerate it.

I also can't eat much processed stuff, and I don't know why. Some of Amy's dinners cause problems, as do some other gluten-free treats. I don't know what it is. I just assumed these last few months it was from CC but now I have no idea. I am so new to all of this, and I feel quite overwhelmed and intimidated. I want to scream, "Oh what's the use???" and go back to denial (and eating whatever) except I feel so awful if I don't avoid these foods, avoidance is not an option. That's quite interesting about the proteins. I began an elimination diet today (after a miserable night last night recovering from my buckwheat episode) and I'm just sticking to what I absolutely KNOW won't bother me for a few days. I will try slooooowly introducing single foods then.

By the way, buckwheat is NOT a grain, but a seed.

I had no idea! So maybe it's not just GRAINS that I'm allergic to? Argh!!!!!!!

Pick up the book "DANGEROUS GRAINS" it will give you a better understanding of what you have to deal with. Many of us have 2ndary food alleries, you might not be in touch with and understand yet. I didn't and it took me several years to trace it back.

I'll check this out. Thanks!!

[ms-sillyak-screwed]

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[daffadilly]

I cannot eat any processed foods like rice crackers, any of the "flours" or potatoes, plus I have some food allergies - but not as many as when I was eating wheat.

I have just about given up on replacement type foods & stick to whole foods, & Lundberg Rice chips, which I use like a cracker.

I seem to do okay with rice - I get Lundberg or plain long grain rice & store it in airtight containers & I rinse it several times before I cook it.

I seem to also tolerate the Mission Brand White Corn tortillas, fresh corn, but no canned corn. no rhyme or reason?

I know that I am a very sensitive gluten intolerant person, & it is not fun

[daffadilly]

I would also like to mention for those new to the allergy problems that it is also food combinations.

Like if you eat rice that day you might not want to eat corn.

For me a corn & potato combination is disaster.

Combination problems are different for each person.

[myserenityprayer]

Well my Nutritionist told me that there are 2 types of gluten-free diets a person with Celiac can follow:

1- avoiding the obvious stuff like wheat, barley, rye, oats etc. and still eating rice, corn, potatoes etc.

2- avoiding ALL starches and grains including rice, corn and potatoes.

She said that some cannot even tolerate the gluten free grains and have to avoid that completely. I got freaked out when she said that so i decided to try the traditional gluten free diet while still eating flax, rice, potatoes, corn, etc. But maybe you should try cutting out all starches and see if that works? I am interested in doing some more research on it. And as mentioned, you may be intolerant to other things like corn, yeast, soy, or even eggs. Rice and potato intolerances are more rare (I think), but still possible. What about dairy? It does a number on my stomach. I haven't been tested for a casein intolerance yet. I am hoping its just "temporary" lactose intolerance. But I have found that when I eat dairy I feel as if I have been glutened. I love eating so its hard for me to eat boring things like lean protein and plain veggies, but I am working on it.

[LonelyWolf307]

I've only been on a strict gluten-free diet for a few days, I reintroduced gluten a few days ago to ensure it was, in fact, gluten and not some other weird allergy. Obviously I reacted, and have avoided the stuff like the plauge ever since. However...

Perhaps this is just because my small intestine would still be harboring a lot of damage after only 2 or 3 days of going gluten-free, but I still experience a lot of pain when I eat anything other than unadulterated fresh fruits, veggies, and small amounts of soy milk (lactose intolerant as well). I'm hoping that's the case, because I'm a vegan and while I haven't quite gotten the hang of that in combination with gluten-free and have to cheat on the veganism now and then, I eat as few animal products as I can help, and won't touch meats (especially since I react to them too). The symptoms are all like when I intentionally glutened myself as a test, but last time I checked white rice flour and flax seed meal is gluten-free! (used them when baking some gluten-free bread, and reacted to it) Is it possible it's just a damaged small intestine causing the problems, or is it more likely to be grain allergies?

[ms-sillyak-screwed]

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[Guest AlabamaGirl]

Is it possible it's just a damaged small intestine causing the problems, or is it more likely to be grain allergies?

I kind of wondered it it was maybe a reaction b/c my intestines may be damaged, and grains are some of the hardest things to digest. I bought some steel-cut oats (totally gluten-free) and I made some whey, so I'm going to try soaking them overnight and see if I have a reaction. Soaking your grains supposedly makes them much more digestable.

[utdan]

Well my Nutritionist told me that there are 2 types of gluten-free diets a person with Celiac can follow:

1- avoiding the obvious stuff like wheat, barley, rye, oats etc. and still eating rice, corn, potatoes etc.

2- avoiding ALL starches and grains including rice, corn and potatoes.

She said that some cannot even tolerate the gluten free grains and have to avoid that completely. I got freaked out when she said that so i decided to try the traditional gluten free diet while still eating flax, rice, potatoes, corn, etc. But maybe you should try cutting out all starches and see if that works? I am interested in doing some more research on it. And as mentioned, you may be intolerant to other things like corn, yeast, soy, or even eggs. Rice and potato intolerances are more rare (I think), but still possible. What about dairy? It does a number on my stomach. I haven't been tested for a casein intolerance yet. I am hoping its just "temporary" lactose intolerance. But I have found that when I eat dairy I feel as if I have been glutened. I love eating so its hard for me to eat boring things like lean protein and plain veggies, but I am working on it.

As I was reading this the words "avoid all starches," and "dairy" jumped out at me. This is exactly what is talked about for celiacs in Elaine Gottschall's "Breaking the Vicscious Cycle." The book explains: 'that way back when the disease was first formally recognized they also came up with an effective diet to treat it. They found dairy, grains, and all starches to inflame the condition. Before they found out gluten was the culprit, people were put onto a "specific carbohydrate diet."' The book also claims that people were getting cured after a strict 1-2 years on the diet. Further, it claims that it was only after scientists isolated gluten as the thing to avoid that people stopped getting completely healed and cured, and that because they didn't do the SCD diet anymore. People started getting gluten-like reactions while on a completely gluten-free diet from other foods. It basically claims that some kind of yeast (probably candida) is the instigator for people who are not true celiacs to develop celiac-like symptoms.

I am starting to realize that I too cannot tolerate the grains, starches, dairy very well either. The book is great and since some of you are already almost doing the "SCD" diet anyway. I'm going to try it soon. It says if you don't see a big difference after sticking to it a 2-4 weeks then the diet probably won't help you.

to read more: Open Original Shared Link

This post edited: this sounds fantastic and is not talked about much on here (perhaps because few do it) but just wanted to throw it out there. I don't necessarily believe it. Also to anyone, is the history of celiac disease and its treatment in 1858-1950's as reported in this book verified?

[daffadilly]

Dan, I have not read this book yet, but I do know that a lot of sick babies were put on the banana and rice diet during WWII. They used to think it was a children"s disease and that you grew out of it. A lot of people still think that, just two years ago a school nurse friend of mine, could not believe that I had celiac, she looked at me funny & said that is a children's disease - how could you still have it?

Back then people might not have known that it was celiac or put a name to it, they just knew that if you fed the babies rice and bananas that they got better.

[ms-sillyak-screwed]

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