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Is Glutinous Rice Safe?
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28 posts in this topic

Hello,

First time poster. I just wanted some advice, if any exists, on the symptoms I'm having.

My medical/diet story:

At age 12, I was put on an anti-depressant Paxil. Then Celexa.

At age 18, I stopped eating mammals and birds.

At age 19, I decided I wanted to be a really healthy human being and I quit "my" anti-depressants (cold turkey).

After this time, however, my diet remained heavily reliant on typical American fare: genetically modified monocrop agribusiness wheat, vegetables and fruits - both in fast food and at the supermarket - agribusiness milk poured onto agribusiness sugar-bombs like "Lucky Charms" and other horrible fare. From teenager onward, I also began noticing my bathroom habits were different from others. My stool was weird, constipation sporadic, and a very itchy and dry skin under me (the bicycle seat area of me, to put it pleasantly).

This culminated in late 2008 with new - stronger - symptoms, after I ate a few Little Caesar's pizzas too many in California. The location and year may be important, but I am just speculating because late 2008 saw an aggressive rise of cheapening food due to the beginnings of an economic deterioration in the USA, and perhaps the wheat source used in pizza companies - while already awful - may have worsened at this time? Perhaps they started buying more GMO wheat?

In any case, the reactions I started having to all wheat products were:

Headaches,

Irritability,

Sensitivity to bright lights,

Pain behind the eyes and around the eyes, and from movement of the eyes,

Tiredness,

Aches,

A constant sore throat,

Stuffiness,

Restlessness,

Inability to sleep,

Loose stool,

Shakes,

Nervousness,

Clouded thinking,

Distractedness,

Weakness,

Malnutrition,

Extremely heightened lactose intolerance (never had before),

Heightened intolerance to eggs (never had before either)

and a number of other problems connected to this.

I couldn't trace the source and I became very scared of eating even vegetables because nobody could tell me what was wrong; and indeed many told me nothing was wrong and it was all in my head. Some suggested I should just eat meat and the problems would all go away. It wasn't until mid 2009 that my mom told me she never eats much bread because it gives her migraines and causes her whole digestive system to get messed up. Thanks mom! So I stopped eating wheat and related breads and after two weeks, my symptoms faded away and I was humbled by this simple but elegant solution to almost all my problems, except the dry skin.

---

Now, almost 4 years later, I am gluten-free, I am baking gluten-free cookies, cakes, pizzas, and breads and enjoying it a lot. I still have the extremely dry patch of skin, but that might be from sitting too much for my job, being at home or bicycling?

Now here is the mysterious "twist".

I don't get a bad reaction to many grains like some who have wheat sensitivity, BUT when I eat anything with "glutinous rice" in it, I get the same thing that I get when I eat a wheat cupcake:

First, my stomach feels "strange" (not bad, but strange)

Second, within seconds, my head becomes foggy, my throat closes up a bit, my eyes become sluggish and my sinuses clear out as if I just shot medicine up my nose (I thought this was a good thing at first, until I learned to associate it with this reaction)

Thirdly, nausea sets in and my breathing must be more forced for me to take deep breaths

Fourth, a headache and abdominal sensitivity

Fifth, general tiredness, aches in the face and a gradual reduction of symptoms over the following several hours

---

I am not sure if this sounds like anything anyone else has, but it's literally the same reaction I have every time. It's like an allergy. Rice is fine, sticky rice is even fine, but this "glutinous rice" product and the multiple Asian delights made of it all give me this same reaction. It is exactly equivalent to a reaction to eating bread for me. What is going on?

An old man I know has a very similar issue and he learned he had some bowel or intestine damage from a long time ago that - once cleared and operated on a bit - allowed him to even begin eating wheat again.

Any help/advice/anecdotes would be appreciated.

Thank you!

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Welcome to the forum, Sprinkle!

For clarification glutinous rice and glutinous rice flour are allowed on a gluten-free diet. It's just another name for sweet rice.

Here's a link for Safe Foods you might like to check out.

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Hello,

. Rice is fine, sticky rice is even fine, but this "glutinous rice" product and the multiple Asian delights made of it all give me this same reaction. It is exactly equivalent to a reaction to eating bread for me. What is going on?

Could it be something in these "multiple Asian delights"? Who is making them? Are you sure there isn't soy sauce or cc?

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Fruthermore, if you are having that sort of reaction, it seems to be more of an allergic one. Do be very careful with those.

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Is the glutinous rice flour from Asia? I would suspect yes. I had been buying rice flour at a local Asian market, the stuff I got is from Thailand. It's possible that there is cc of some sort, and I did feel like I was getting glutened. I still have some of it I'm going to test again in a month or so. You didn't mention if these items were specifically items you baked? Or did you get them at an Asian bakery or something? If at a bakery, you'd want to confirm every ingredient they use is o.k.

However, as Sylvia mentioned, glutinous rice is basically another name for sticky rice, it's not the same as the gluten protein found in wheat, etc.

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Hmm. Well, I know it's *supposed* to be okay, but allow me to question whether it actually is for the purposes of my health! This is what I said:

I don't get a bad reaction to many grains like some who have wheat sensitivity, BUT when I eat anything with "glutinous rice" in it, I get the same thing that I get when I eat a wheat cupcake

I mean it. Anything. Whether it's the glutinous rice powder baked into something at a street vendor or whether it's bought at a store where I can individually look up every ingredient. Unless I'm allergic to Mugwort or Sesame (which I doubt, as I can have those in plentiful doses), the problem really does stem from this ingredient called glutinous rice.

If you're suggesting I need to investigate whether allergen foods like Barley, Rye, Wheat, Spelt, etc. are somehow getting mixed into the glutinous rice via the manufacturing method, I think I am out of luck. The Chinese and Korean manufacturers seem to keep that kind of thing guarded. And there is no "gluten free" certification label boasted on any product here that I can find.

Has nobody had a reaction like this to glutinous rice products made in East Asia? It is either the manufacturing method or something else is fishy about this ingredient for me.

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A few thoughts:

1. Just because something " disagrees" with you, it does not mean it is a Celiac Gluten reaction.

2. Are these foods made with the rice, also made with soy sauce? Are the street vendors using soy sauce or other gluten foods in thier carts that may have cc'd the food?

3. For some reason, it makes you sick. So, don't eat it.

4. Perhaps you could research what the difference in "glutinous" and regular rice is. Maybe something in the processing bothers you?

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Regarding Glutinous Rice: in this context, glutinous means sticky (which is usually tied to sweet). Unless a foreign substance is added to it, rice is always inherently gluten-free.

The human body is a very poor test for gluten, since there are so many other reasons why you might feel off after eating something.

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when I eat anything with "glutinous rice" in it, I get the same thing that I get when I eat a wheat cupcake:

Rice is fine, sticky rice is even fine, but this "glutinous rice" product and the multiple Asian delights made of it all give me this same reaction.

As Sylvia said, sticky rice, sweet rice, and glutinous rice are all the same thing.

http://www.foodsubs.com/Rice.html

http://en.wikipedia.org/wiki/Glutinous_rice

http://dohn121.hubpages.com/hub/an-introduction-to-sticky-rice

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As Sylvia said, sticky rice, sweet rice, and glutinous rice are all the same thing.

I seem to be failing to communicate with some of you. Let me try to be more clear. I understand that glutinous rice is supposed to be the same thing as sticky rice. What I'm saying is that some products with an ingredient called "glutinous rice" are giving me an allergic reaction identical to my allergic reaction to wheat. (The foods' common variable in the known ingredients.)

I cannot know if this substance is touching wheat products, but so far many seem to be suggesting that it must be the case. I understand that nobody knows, but the reason I joined this forum was to ask if:

a. anybody knows.

and

b. anybody has had similar symptoms to either wheat or anything else.

I really appreciate your collective diligence in checking my sanity; yes, I know glutinous rice is supposed to be the same thing as sticky rice. Yes, I also know glutinous rice does not contain gluten. Yes, I know if it gives me a reaction I should stop eating it. I am here for information I don't know. I'm telling you, either:

a. The ingredient "Glutinous rice" is not, in fact, merely glutinous rice.

and/or

b. There is a lurking variable that someone with experience recognizes in my story. i.e.; vegetarianism? anti-depressants? some link I haven't uncovered?

---

So, to conclude, let me rephrase my questions:

1. Has anybody had this list of symptoms for any food - and what food, if any?

First, my stomach feels "strange" (not bad, but strange)

Second, within seconds, my head becomes foggy, my throat closes up a bit, my eyes become sluggish and my sinuses clear out as if I just shot medicine up my nose (I thought this was a good thing at first, until I learned to associate it with this reaction)

Thirdly, nausea sets in and my breathing must be more forced for me to take deep breaths

Fourth, a headache and abdominal sensitivity

Fifth, general tiredness, aches in the face and a gradual reduction of symptoms over the following several hours

For me, I get this reaction to wheat, spelt, barley, rye, malt and processed products with an ingredient called "glutinous rice"

2. Has anyone had - or heard of - a solution to these symptoms?

---

Thanks for letting me try to clarify. Please let me know if anything I've written still doesn't make sense, or if I still haven't passed your "common sense" check.

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1. Just because something "disagrees" with you, it does not mean it is a Celiac Gluten reaction.

2. Are these foods made with the rice, also made with soy sauce? Are the street vendors using soy sauce or other gluten foods in thier carts that may have cc'd the food?

3. For some reason, it makes you sick. So, don't eat it.

4. Perhaps you could research what the difference in "glutinous" and regular rice is. Maybe something in the processing bothers you?

1. Thank you. Very good point. Anything you heard of that sounds like my particular brand of "disagreement"?

2. Some of them indeed use Soy Sauce; however, I've seen their foods made and they are proud of their ability to not mix in unnecessary aromas or flavors. Soy sauce (which contains wheat) often does not find its way anywhere near their clean, rice-based cooking utensils and pans.

3. I am definitely not going to eat it anymore! I am still feeling the effects from yesterday's "test".

4. I think you may be onto something about the way "glutinous rice" is processed. That's what I'm getting at, and if it's true, I would like to research it on this forum in order to help benefit others who may have a similar issue.

I hope that someone can answer my 2 reformulated questions in my previous post. :)

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I have never had this reaction to glutinous rice and have never heard of others having it.

The fact that the people who have replied have not told you that they also react to glutinous rice tells you that they have not. If they had reacted like you have, believe me, they would have told you. And if they had heard of others reacting they would have told you.

richard

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1. Thank you. Very good point. Anything you heard of that sounds like my particular brand of "disagreement"?

2. Some of them indeed use Soy Sauce; however, I've seen their foods made and they are proud of their ability to not mix in unnecessary aromas or flavors. Soy sauce (which contains wheat) often does not find its way anywhere near their clean, rice-based cooking utensils and pans.

Anyone can have anything not agree with them. There is no mutual safe food that everyone can eat without issue. I"m willing to bet however, there is something in common with the products you have eaten.

That doesn't mean that it wasn't CC'd or what have you beforehand.

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Well, thanks for your responses.

It doesn't really help. I've just been told what I already know. But I appreciate your responses at all. Thanks, and take care everyone!

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Like shadowicewolf said, the throat closing up symptom sounds more like an allergy than an intolerance, like an anaphylactic reaction.

Glutinous rice and sticky rice are the same thing, and are a separate subspecies of rice. But sometimes other rice dishes are called "sticky" because of the way they're made, but they don't use the same subspecies of rice as true sticky rice. This might be why you've been able to eat some sticky rice without a reaction.

It would be really unusual to be allergic to just one subspecies of rice, but you never know. You might want to avoid all rice for now, and get tested for a rice allergy.

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Thank you kittty.

I also have an update to my research that may explain what's going on. It has to do with the difference between whole rice and processed rice powder. I will post about that in this topic soon, when I get permission from the author.

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If the sticky rice is a processed rice powder, and not a whole grain product, then all bets are off. There is no way of knowing what happens to something when it is processed. We often talk here of "a facility in which gluten is processed" or "using the same lines as" gluten products (even though the lines are cleaned between runs. U.S. labelling laws do not require manufacturers to state this but those wishing to sell to the gluten free market usually do so people can make up their own minds whether to buy a product. So even if you personally are buying a sticky rice processed powder, the processing plant could have cross-contaminated it. If you are buying a baked product made with a processed sticky rice powder, the baking facility could have cross-contaminated it.

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I am paraphrasing my friend, but here is an update for those curious about this "pre-processing" and other possibilities related to digestion. My friend has issues with many grains, even ones done "purely" with no contamination.

From the research she has been conducting, she learned that digestion requires enzymes and certain foods provide enzymes, others lack and require the body to produce enzymes for digestion. Producing enzymes for digestion (in the pancreas) takes a lot of energy, so when

we are sick or run down, our bodies do not digest as well. Beneficial bacteria in the intestines also produce enzymes.

Foods that conatin enzymes are mostly "alive", so all raw foods. However, some raw foods also contain enzyme inhibitors (nuts and seeds and legumes) that prevent the seeds from breaking down before they're able to sprout. These nuts, seeds, and legumes are best eaten sprouted

or/and cooked and served with raw ingredients. Which by the way is really easy to do at home- you just soak the beans or seeds overnight then drain them and rinse every 8 hour until sprouts start growing. She says nuts could be soaked overnight in salt water then dried at low heat (about 150 degrees) until crispy.

Not only does the body require enzymes to break foods down during digestion, but the body digests certain things together, so when plant materials are separated from their natural counterparts, the body must take from stores of these parts to digest properly. For instance, the body likes to digest fat soluble vitamins with fats (vitamin K and D). So if you are eatng a lot of fats that lack the fat soluble vitamins, your body will take from your vitamin stores to digest the fats. She says this example is from her very basic understanding, and there is a lot more to the story of Vitamins K and D.

Refined products like hulled rice (sticky and white rice), bleached flours and sugars, are all separated from the nutritious part of the plant, the part that our bodies are used to digesting the starch with. So, refined food products will naturally be harder on the body to

digest, requiring the body to not only take from stores of vitamins but also to produce enzymes. In other words, the mere fact that the grain has been ground up and sifted from the parts that normally come with our evolutionary diet of the whole is what may cause any powdered substance like glutinous rice flour to become harder on the body.

The most nutritious and beneficial foods for aiding in digestion are raw fermented foods like... KIMCHI! Fermented raw foods contain not only the enzymes from the raw food, but also added vitamins that develop during the fermentation process, and also beneficial bacteria (mostly lactobaccili, she guesses).

The research she is following for diet recommendations also recommends eating animal products of some sort such as a milk (which contains blood of the animal) or another kind of pseudo-meat. Perhaps seaweeds as well. The research was done by a Dentist in the 1930s- he did anthropological research around the world to identify what was causing tooth decay and bone deformities (including crooked teeth) in Western and developed societies that were absent in traditional villages. He concluded deformities and disease are caused by the developed society's diet which often lacks raw, fermented, and sometimes animal products, but is packed full of refined sugars and flours and highly processed foods produced at high heats in factories - such as crackers, modern breads, most "pressed shape" food.

A woman named Sally Fallon later went on to write a cook book based on the diet described by Weston A Price and developed the Weston A Price Foundation. Their website has some more info and links about the diet and research. www.westonaprice.org

Supplements are also helpful. Probiotics (refrigerated ones), good multivitamins, and enzyme supplements may help you in the mean time. I prefer not to take these, but my friend says they help her a lot when she can't access good food in her busy lifestyle. And she can still get run down often (probably from stress from the selfsame lifestyle) or maybe from eating dairy or other foods she is sensitive to ... but anyway you get the idea.

So I hope that is a helpful post for people. I am sure much of this has been discussed before but I found it enlightening and interesting.

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Sound to me like 1 manufacturer of glutinous rice flour is cross contaminated with gluten and furthermore, that it is a/the large manufacturer of "Glutinous Rice Flour", verbatim, where you live. Another allergy/intolerance doesn't make a lot of sense when you can have rice in all other forms.

You say you bake with a lot of your own ingredients, however when you said you have a reaction to everything that has glutinous rice flour, it sounds like you've never baked with the ingredient. You could buy all the brands available (again, glutinous rice flour only, don't worry about the sweet rice flour or other named flours that should be the same thing, you already know they're safe) and see if you react to all of them.

I can't help you out with my own reactions to gluten. I still don't know what they are/if I get them. In any case, what happens to you doesn't sound all that different from what other people have described as 'glutening' reactions. You could, of course, purposefully eat a small amount of gluten and see what happens, and see how similar it is to your glutinous rice flour reaction. (Not recommending it, but if you really, really want to know.)

I haven't heard specifically all you've said about processed foods, but I'm aware of complicated interactions when it comes to absorbing nutrients. The fat and vit D, K are new to me. In any case, that's pretty far-fetched/complicated if it has anything to do with your all your immediate symptoms. You sounded pretty certain that you reacted only to that 1 ingredient labelled as such, not all refined foods.

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I have lived all over the Asia and the Far East for the past 35 years and been in Thailand for most of the last 17 years. After a lifetime of migrains I had allergy tests about 15 years ago and I stopped eating food with gluten, wheats, oats etc., dark vegtables such as spinage and all dairy products (except condensed milk) and any meat from cows. I was also told I had an alergy to histamines.

Basically I lived on Rice and bannanas for about 10 years (plus other fruit and veg. and some pork and fish, but not citrus fruits). This made a big difference and my migrains were reduced.

Things began to improve as I got older and now I have more tolerance for basic bread , biscuits, etc.

Anyway the point of this blog is that: although I have eaten many different types of rice (Thai hom mali [sweet smelling] is by far the best) without any problems. BUT I always have a REALLY BAD reaction to sticky rice.

I find that I litrally cannot breath and get terrible pains in my head and stomach and very dizzzy. It is quite scary and I never eat it at all now, although I do try a nibble know and then just to see if things are the same.

I don't think it can be due to the processing as i have tried it in many different parts of Thailand over the 17 year period and it is always the same reaction.

I would be very interested to know what causes this reaction.

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The OP didn't say he had a problem with the rice itself, but only that specifically labelled flour. You also don't seem to be a celiac, (you eat bread now without issue) so it wouldn't matter to you if your rice flour had some wheat flour in it.

I too want to know why you would react to sticky rice. The only thing that's supposed to be different is a ration of specific starches, and it seems odd that a ratio difference would make you ill. Although I suppose that's not unheard of for things like fructose malabsorption. But that also doesn't have headaches as a symptom I don't think.

I have read that they are managing to increase the yield of sticky rice crops since apparently it used to produce less. Maybe you could look up how sticky rice crop yields are increasing.

You could also try some sticky rice from far away, like India, just for a test. Maybe that would be fine.

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Hi,

I can't say that I have had the problems you have with glutenous rice. When I went to China I was very suspect of it (as it was in many things that I ate) and I felt better than I do at home. That said, I do know of people who have Celiac and also develop an issue with rice in general. Do you have any reaction to other rice products? Unfortunately we are all our own little test subjects and what works for one of us could be awful for someone else.

I have some weird ingredient out there that isn't gluten but gives me a bad reaction but I'm still trying to chase it down and I just can't figure out what it is...maybe cumin...but then, I've tried to test it and it seems ok. It is sometimes a little frustrating. Anyway, I don't know that this actually helps you but I can say that I know people with BIG issues with rice that cause vomiting and migraines and all kinds of yucky horrible things...it just isn't a gluten thing for them it is a separate problem (and I'm sure an annoying one).

Good luck and hope you are feeling better! :)

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Hi Sprinkle,

I have reactions to nightshades, carrots, grapes soy, dairy, coffee, and hard work. We have many people on the forum with various food intolerance reactions, including corn, salicylates, lectins, eggs, etc. etc.. There is a feller named Riceguy who has reactions to rice as I recall. I stopped eating all rice for quite a while myself. I still don't eat rice much or very often. The issues seems to be that damage to the gut from food reactions can cause food intolerances to spring up. Some people call this leaky gut. These reactions can be temporary or permanent.

IMHO it is entirely possible that you could have a reaction to rice. That doesn't mean it is a gluten reaction, just like my nightshades (potatoes, peppers, tomatoes, eggplant) are not gluten reactions. But a reaction is not fun if it is from gluten or something else. So the advice to avoid eating those foods is good. Sometimes after people are somewhat healed up they can trial foods that bothered them and are able to tolerate them again. Usually the suggestion is to not eat the offending food for 6 months and then trial a small amount for several days running.

I used to have bad hayfever symptoms before going gluten-free, but they are much better now. Going gluten-free can affect allergies in my opinion. Other people had the opposite result or no change tho. We are not all the same so the only way to know is to try a diet change yourself.

Some people suggest we develop allergies or intolerances to foods we eat a lot of often. That is one of the reasons some people follow a rotation diet.

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This may or may not help you, but from my own reactions to various foods, I've discovered that some foods which contain a type of starch called Resistive Starch can cause some of the same symptoms that gluten does. This is not likely to be the same for everyone however.

Resistive starch tends to take longer to digest than other types of starch, thus acting a bit more like a fiber, reaching further along the digestive tract before being broken down. That's a very basic description, and not meant to be super-scientifically accurate.

One type of food with a notable ratio of resistive starch is bananas before they're really ripe. That is, when they still have some green on the skin. The more green, the more resistive starch they're supposed to contain. If you can eat a banana which still has some green on the skin, then you may not have trouble with resistive starch. Or at least the type found in bananas.

I think the suggestion of trying the flour in something you make yourself is a good idea. There are companies which sell sweet rice flour that has been processed in a dedicated gluten-free facility. As I recall, Authentic Foods is one such company. You might also try the rice itself, such as the one from Lundberg. They have dedicated facilities, so you can be sure there is no gluten CC. I think they call their sweet rice "sushi rice".

Other types of starch which may be a problem for the digestive system of some individuals include tapioca, cornstarch, potato starch, and arrowroot starch.

Have you tried amaranth? This pseudo-grain (technically a seed) has a starch content which tends to make it get particularly sticky as it cooks.

The only other factor which comes to mind regarding your trouble with glutinous rice is that the soil in some areas of the world contain higher levels of organic and/or inorganic arsenic. I suppose pesticides and other stuff in the soil may also pose a problem for super-sensitive individuals.

As others have stated, we all react differently to things, so you may not be able to compare your reactions to that of others. But I can tell you that although the reactions I get to certain gluten-free food substances are very similar to those caused by gluten, I have, over time, been able to discern the difference most of the time.

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I realize that this is an old post, and I may be a bit too late, but for what it's worth...

 

Hi there, I actually live in Asia and have had similar experiences. When I first came here, I had been gluten-free for about 7 months. I got sick almost immediately. I realized very soon on that some of the "rice flours" and "potato flours" that I'd been purchasing, or that my boyfriend was using to (very sweetly) make me gluten-free bread and sweet things, was actually filled out with wheat flour. 

 

Most Asian companies will not list this on their ingredients list. I'm not sure exactly why, but I think it's probably because labeling laws here are not NEARLY as strict as those in the west, and issues with gluten/wheat are mostly nonexistent. Even asking companies if products contain wheat as a filler isn't a reliable method: some will fib just so you'll buy their product. :-/ If a bag says "100% rice flour," it is more likely that it's actually 80 or 90% rice flour. 

 

It's been a long process for me and I haven't yet figured it out. I'm beginning to suspect that all of the rice here is CC'd as well, as I've had stomach pain after eating it a lot. 

 

If you're 100 and ten gazillion times sure that your glutinous flour is not being filled out with wheat flour, then I'm not sure what to tell you. But if the flour is imported from any Asian country, I'd bet this plate of gluten-free, egg-free, chocolate chip cookies that that's your problem. :) Good luck! 

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    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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