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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Feeling Sick And Bloated From Rice!
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I have been having such challenges with my diet.

I have been trying to keep a balanced diet and actually have a good appetitite. the things is that I have been running into a lot of trouble with different foods.

I posted last night in the medications sections about Zelnorm. I thought that it was too aggressive and making me more bloated. I then took a hard look at what I ate last night and realized that I had white rice which I think is what is making me soooooo bloated! It was horrible. I was distended to the point that my tummy was tight and hard.

I also had Rice Dreams frozen desert (less thatn half a cup) but I am sure that it didn't help the situation.

I've also been noticing that when I have my gluten-free toast in the morning it also makes me bloated. I kept thinking it was my coffee so I stopped it and I was still bloated. Then I stopped the fruit spread too and I was still feeling bloated and muscle achy.

Yesterday I didn't have the toast ( not because I was watching the rice...just because I didn't feel like it). I had just a banana and it was better...no coffee either...so no milk!

Does anone else have any problems with rice? When I was keeping a food diary with my old nutrionist we noticed that brown rice was making me bloated and sick. She said it was because it was too fibrous for me so I stopped the brown rice. I haven't really been having white rice so I never noticed until I made it last night for the first time in months!

I just don't know how to handle my diet anymore or what to eat. I try to maintain some sort of variety and nutriion but the truth of the matter is I am better off when I don't eat! I aws so sick during the night because of this and this morning I had to cancel an appt at Columbia Presb with the nutrionist because I feel too sick to make the drive. Hopefully, they will call me baack and let me do a phone appt. so far, this morning I haven't been able to get through to them and have left several messages....oh well

I think I will have to find someone in the Freehold, NJ area.

any feeback on the rice problem? Do you think that could be it?

I might as well add it to the many intolerances on my list. I am losing my mind over this and feel so bad physically. :angry:

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I just spoke with the nutrionist at Columbia. She said to stop eating the rice as she feels that I am reacting to it. She said that we can try to bring it back a little bit at a time later on.

she said that I need to be more diligent with reading labels and avoiding gluten regardless of the test results. She said that she has several people who tested neg for the gene but still react violently to gluten. she said that I need to treat this as if I tested positive. she further said that the endoscopy was done at 5 months into the gluten-free diet and that the results were not valid for her and that they have not yet identified all the celiac genes. The 2 genes I was tested for are the more common ones.

she gave me a lot of tips on preparing foods and we went over the York food allergy testing. anything that I tested strong positive to ...I need to avoid. All the others we are going to try an allergy rotation diet....but for now they are out as well.....just until the gut simmers down.

she said that she didn't think I needed to do the Enterolab testing and spend that extra money for the stool gene testing. Either way, I have to scrutinize for gluten...as I get so sick from it. The other foods that I react to are common allergy foods for celiacs: dairy, eggs, soy, peanuts, potatoes. We are going to try to work around them.

She's really very good and I felt a little better after speaking with her but broke done while explaining things to her. I am just wiped from all of this. Hopefully if I get my diet a comfortable point some of the muscle pain might diminish. The muslce pain is always terrible after an accidental ingestion.

Oh well.............onward! :P

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That sounds so frustrating! I know the feeling - sometimes I think I've finally got it all figured out and then something happens, like yesterday for lunch I had something new - Chicken of the Sea smoked salmon in a pouch - it was really good! Had very basic ingredients, too. Well, 3 hours later my stomach started feeling gassy and funny, then my head did a little, too, and I started to suspect the salmon. I went to the COTS web site and it says in big letters, GLUTEN FREE PRODUCT. And nothing else suspicious in it.

I didn't end up having a major episode, just some discomfort for a couple of hours, but I don't know what I ate, what did it, or if it was all in my head (what I think a lot of the time, honestly!!!) So I don't know.

I have heard of people reacting to rice. I used to not be able to eat it when I was still eating gluten, it would make my heart race and I'd feel like I'd had 20 cups of coffee or something. But it doesn't do that to me now. It could be that you are still in the middle (or beginning) of healing and can only tolerate a few basic things for the moment. After some time passes you may be able to eat more things.

How are you with other starches? When I was really sick a couple of weeks ago after a gluten episode, I found yams to be really soothing to eat. Something warm and easy to digest is often one of the best things to try to eat when your stomach is going haywire! It's hard though when you crave all sorts of other things instead...

You'll figure it out, even if it takes time, just like I believe I will figure it out. I mean, it's our life, right, and we have to make the most of it! :)

Stephanie

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Hi Mel, my nutritionist told me there may be as many as 170 GENES that predispose people to celiac. We just don't know for sure how many there will be.

If you doubt that, consider that if you research the wheat growers' assns. here in the U.S. online, you can see one of their future goals is developing bio-engineered, gluten-free wheat. :o If *they* are spending money on *that*, you can bet your bottom dollar they have good reason to believe it's a worthy investment, if not a mandatory one, for staying in business.

Re: your gluten-free toast and other reactions, I wonder if you may be allergic to soy and dairy. If I remember correctly, the body often mistakes soy for gluten and freaks out. Someone else may be able to explain that better :unsure: ! I can't eat *any* version of gluten-free commercial baked good because every one I've found (keep in mind I'm a newbie) has soy and dairy in it.

Your body could just be reacting to the fiber in the rice because your innards are so inflammed. Once things calm down inside, you may be able to tolerate it.

Re: canned tuna and other meats, my mother's nutritionist told her that often those can be topped off with soy or other allergenic oils. However, food packagers are not required to label their food with all allergenic products they contain, even trace amounts, until January 2006. And even trace amounts can make you sick as a dog. I had a chicken broth last week, less than 2 percent wheat, and am still paying for it today :blink: .

When you are reading labels, my nutritionist says not to buy anything that says there is a spice "powder" such as garlic powder. That is because many of the anti-caking agents for the ones with "powder" in the name have gluten in them, and the companies don't put ont he label that they are in there. Also, be careful if it just says "natural flavors," and know that most bouillons, soups, etc. are no-nos. Tell your nutritionist to send you a list of terms that are vague enough you should avoid them, and/or them chemical names of these things, etc. She needs to do more than tell you to read labels; you have to know exactly what to look for. She needs to tell you this information because at this stage, you don't know yet what to ask her, you are so blown away w/what these allergens are doing to you.

I am a newbie but have begun exploring and buying foods off the gluten-free mall here. You can read all the ingredients of the product right online before you buy. Hope this helps. I feel sad that you feel so bad. It can be frustrating (she said as she scratched and scratched at her own gluten-caused itchy skin!).

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Oh, p.s., if the label says "modified food starch," don't buy that, either. Because you don't know

a) what food the starch came from, wheat, corn, potato, etc.

B) and if it has any gluten in it.

c) whether this month the product includes the same food starch that it did last month!

Re: c, the reason they are allowed to just put "modified food starch" on the label, so I have been told, is so the food processor can buy whatever is the most economical starch at the time they are mixing that batch of food. One month, it might be wheat starch. The next month, it might be corn starch.

Even if it is corn starch, it could have gluten in it. And even if the corn starch is gluten free, if they run it through machines that just last week were filled with gluten-rich wheat starch and weren't cleaned....you get my drift.

If you see the term "modified food starch", just walk away!

Hugs,

LAM

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thanks for all the information. soy is a big killer for me! Dairy and eggs do me in too. they just make me so sick...but soy destroys me! The bread that I have been buying has none of those ingredients. It is made with white rice flour, yeast, guar gum and a few other things.

I am making sure the tuna or canned things don't have soy either...so far so good but I am not a big tuna eater.

I once had steamed chicken from the Chinese Restaraunt that made me deathly ill. I'm sure it was the broth

I recently bought some sugar sweetened banana chips that have coconut oil and banana flavoring. I think I'm better off not snacking on them now. They could be adding to how poorly I am feeling! I'll have to be more careful of the word flavoring.

I have also been having a problem with roasted nuts. I had raw cashews which were fine so decided to have roasted cashews in canola oil which made me sick. The nutritionist feels the oil is too much for me now and told me not to have oil on anything...just a drizzle of olive oil. she wants me to continue with the raw nuts for protein.

At this point my gut is shot! but the reality of all this is sinking in. The thing that messed me up was the dr. telling me I didn't have celiac. she sort of dismissed me as a patient. Of ocurse then I started to second guess myself.

I now that i have no choice but to try harder. There are too many wasted days because of this and I just feel so sick most of the time.

I think I will continue to work with this nutritionist as she is the only one so far that has a clue. Hopefully with some hard work and time I can start to add back foods. Right now...my diet is limited. I will just have to try harder at reading laebls and educating myself.. ...between the gluten, soy, eggs, dairy, peanuts, etc it is so hard....but intentionally eating it will make me sick. so that's out! I have to try harder at not letting it slip in there! I really want to get my life back and not live with this pain anymore. Especially the day to day struggles of accidental ingestion through lack of knowledge. It gets my muscles and every inch of my being! I t makes me feel poisoned.

Today was rough..........I had my crying session but then pushed myself to get out for a few hours. the evening was spent resting and thinking........

I don't really need a test to tell me how i am feeling .but I think it wouldn't have made me second guess myself....I guess when you hear from doctors for years that it is all stress and that you need a shrink you start to believe it.....who knows they may indentify more genes that are related to celiac but while that's being done I can't make myself sick waiting and not adhering to the diet.

it doesn't make sense.

Maybe I can make tomorrow better by being more diligent.

thanks for all your help,

hang in there ;)

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Hi Mel,

I noticed that the things you mentioned that give you problems are starchy, like rice, or probably coated with starch, like roasted nuts. I've been gluten-free for two years but still get sick a lot, so I started looking into other alternatives. There is a lot of research out there to support the theory that most types of carbohydrates (including starch and processed sugar) are extremely hard for damaged guts to digest, and may in fact inhibit healing. You may want to cut out starchy foods/processed sugars for a while and see how it goes. I'm trying that now - it's called the Specific Carbohydrate diet - and only simple fruit sugars and honey are allowed. It's too soon to say how it's going, but I'm desperate to try anything that might make me better!

If you're at the bookstore sometime soon, check out the book by Elaine Gottschall called "Breaking the Vicious Cycle." There's a chapter in there about Celiac Disease that is really informative.

Hope you feel better soon!

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Hey, that previous idea re: starch is interesting -- I've been noticing my stomach isn't handling those well, either. Maybe I will lay off those a while, too. Fruits are very good if you can eat them because they are a good source of antioxidants. My nutritionist always tells me to eat more fruit because of that.

Also, she told me a nice remedy for itchy skin if you get that. Drink 1 oz pomogranate juice in the a.m. mixed with 4 oz. cranberry juice. Repeat in the evening. I was so itchy yesterday I opened the bottles and was drinking them in the car and haven't itched until just a few minutes ago. The pomogranate juice is kinda interesting, but mix it w/the cranberry and it's not so bad.

P.S. Mel, don't beat yourself up, you are doing the best you can -- who knew the labels were so vague? I never imagined that would be allowable in this country, but now, wow, it has been a total shock. Also, don't feel bad because the dr. derailed, you, either. We get raised to not question them, and it is a long road to get to where you question them. Heck, my mom is 64 and got derailed by drs. on this her whole life until this past December, she met an endocrinologist who knew the minute he heard her symptoms. The only reason I started questioning early is because my late husband got cancer when I was 34, so I had to learn fast!!!

The way I see it, we have to be particularly forgiving of ourselves w/celiac. The culture of food in our society is so unforgiving. It takes about six months to really get into an allergy-free diet, and for those of us who are finding out other allergies we have every day, you have to add time for those additional ones that pop up along the way. Just know that you did the best you could today and you'll try again tomorrow.

Hugs,

westiepaws, going to find the itch-less juice again :)

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Thank you all for the words of encouragement. I say this between tears. I am so frustrated and at times feel so hopeless. Especially on days when there is so much pain.

My nutritionist told me to leave out starches right now as my body cannot handle them. She suggested BOILING a white potatoe and having a small peice of it. She said that boiling will help to break it down so as digestion is easier and a lot of the starch will seep into the water making it less starchy.

I am so afradi to give it a try.

I posted somehwere else about dried fruits that I have been having which I also think have been making me sick. someone wrote that they could actually be dusted with wheat flour to keep them from sticking. Boy this is really so involved. There is no denying how horrible I feel today.especially when I was up all night with gut and body pain. I still feel toxic and my hubby and I couldn't figure out why.

I would love to say that I just won't eat for a week or 2 just to get all this out of my system....but that is not practical...besides I still get hungry. :wub:

I am lucky to have found this site which has been so helpful and educational to me. I feel guilty that I don't give back as much as I get and often feel like a pathetic fool who is always having problems! :( sometimes I get embarassed to post.

My humblest of thanks,

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Mel,

You might be sensitive to the sulfites in dried fruit. I absolutely LOVE dried apricots, but I get sick a couple hours after eating them. Or, if you ate a lot of them, your body might be overreacting to a whole lot of fiber all at once.

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You are probably right about overdoing it with the fiber...and I am also sensitive to sulfites. I guess potassium sulfate is sulfite!

I checked the dried figs and sure enough they were dusted with white powder....hmmmm.

given the toxic way I felt it was probably wheat flour.....no more figs for me!

Thanks again. I am learning to be more conscientous with what I eat.

:rolleyes:

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Bingo, the potassium sulfate is probably it! My mom is allergic to sulfates and sulfites also and it causes her major, major pain in guts and joints if she gets it by accident.

Mom says is possible to get dried fruits that don't have sulfates in them. If you like dried cranberriers, the Ocean Spray dried cranberries are sufate/sulfite-free (the last time my mom read the label, so double-check, but it hasn't changed for at least a year as far as she knows). As far as my mom can tell, she doesn't *think* there is anything else in there that is allergy-inducing, and knock on wood, she's done okay with them since she started the diet.

Mel, you might not want to eat them immediately, as they are fibrous and a bit acidic, and your innards may need a break -- or, you could just eat one or two and really chew them up good and slow. Your nutritionist would know when you will be ready, and how much you could handle at a time. No matter what, it would be easy for your hubby to find in the store. And they are SO delicious, you can look forward to eating them when the time is right! :)

Don't worry Mel, you are learning tons and will be able to share that with other newbies as you get to feeling better. I feel like I know very little and am always asking questions here, and am just glad that what I have learned so far has been able to help you!

Hugs,

westiepaws

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Thanks Westie,

I really needed that hug and your email was so heartwarming.

You are right about the sulfites..........that's why I don't drink wine anymore.

So between the gluten and the sulfites I felt awful!

Thanks for the heads up on the cranberries I will look for them and try them when the time is right. I found raisins that are also free of preservatives and will try them as well.

This board has been such a great place for learning and sharing experiences. Where else can you get all this information at your fingertips? I had been going around in circles for years....so sick...with no help from doctors until one dr found something in a blood test that another dr took.

Sometimes, I sit back and relive old incidents of being really sick and then something clicks....and it finally makes sense. I can usually pinpoint it to exactly what I ate. It is finally all coming together!

How are you doing?

This morning is already a little better for me. :D

take good care,

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Trader Joes also has some dried fruits without that are unsulfated. (I so much prefer apple rings that way!)

(BTW, you could also get a dehydrator and make you're own. It takes a while once they go in, but preping most foods is pretty fast and easy. Good way to make flax crackers too. :-) )

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I stay away from rice because it is starchy and I get gassy and bloated from it.

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I've had an allergy to rice for years. That is my reaction any time I get riced. I also go into anaphylaxis. Frustrating.

Stay away from rice. Oh thanks for the tips about starchy foods. Potatoes may be upsetting my stomach. What about fruits like pears etc???

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I'm staying away from the rice...I had to learn the hard way. even the one peice of rice bread toasted in the morning was making me sick and bloated.

the real killer for me though...is SOY!!! I am soooo sick today from gluten-free cookies that I had yesrterday........they ar e"made in a facility that uses soy, eggs, dairy, peanuts and tree nuts"! all the things that do me in...but soy really kills me. ......between the muslce pain, vertigo, racing heart, fatigue.....I feel like I've been poisoned! :angry:

sorry to vent today...........but I feel awful and am tired of going on like this. :(

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I understand... I am hurting too and am tired of being asked, "How are you doing?" when the answer is always the same. I keep thinking, I am only 33. What is wrong with me???? I am too young to be this sick.

I am so sorry that this is hurting you so.

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thankssssssssss...i'm sorry that you are having a hard time too.

Let's pray that tomorrow is a better day!

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I feel for you. I'm beginning to think that I can't eat anything too!!! Maybe we just have to give our guts some time to heal for the bloating to go away. Do you also get reflux, burping and the hiccups? I couldn't stop the burping/reflux yesterday. I'm not sure if it is actually worse after going gluten-free!!! Maybe I'm just more conscious of it....I don't know what to think anymore. I've had the hiccups really loud for years and had no idea.

An interesting fact for the women. Have any of you ever had high prolactin levels?? I have, and yesterday I actually came across a link that indicates that there is a link between high prolactin levels and celiac disease. Go figure!!! My doctor hasn't even made that connection.

Skar

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:)

Mel,

It's great to read your posts even while I'm sad about these rough times for you.

It means more people are also going through it that aren't posting, and also helps me in my rougher times.

Sounds like the nutritionist is better than the doctor but even then perhaps you need to be assertive with her sometimes.

The run-around I had from various blase elements got to me in the end, I have done a lot of second-guessing in my time.

Interestingly in the "publicity and publications" section someone reviewed the Gottschall book. I haven't read the book but it appears she made misleading comments about healing of celiac disease. Paradoxically, though, the actual regime might be exactly right for some of us for a period. Almond flour is part of it I believe.

Foods like aubergines, oranges, potatoes and tomatoes are rich in salicylates, my nutritionist said that if I don't have a problem with aspirin (which I don't) then I've no problem with salicylate-rich foods (thankfully).

About rice - and chicken - I found them difficult to digest before, and still do. Small quantitities and also minced up fine, often help me. That's simply my experience.

Ener-G make rice bran in a box, which I add to things for extra fibre. Also I occasionally get Higher Living Ragishira (finger millet powder with cinnamon) to add to yoghurt, it claims to be fibrous but is very fine. (Maybe you don't have those brands in the US.)

The moral for me at any rate is, there are things I have trouble with if they are in big lumps but not if broken down fine - chicken and rice and also beef steak.

A few months is early days - give it a couple of years - maybe this advice isn't much comfort!

Are you taking digestive enzymes or stomach acid supplement? I digest better if I take one of those at the start of a meal/the first meal of the day, the latter can be got in the US from Solgar. I no longer take them regularly but would still probably benefit from it every now and again. The B12 situation has also been discussed in this context.

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That is so wierd. I was getting the hiccups a lot about 3 weeks ago.

One piece of advice that really has helped me (and the medicine I am on too), is not to eat after 6:00. I can't do that. I've tried. But usually can eat by 6:30.

The meds I am on keep me from eating more than 3 times a day too. And I read today that that acutally helps the stomach not produce excess acid. Any food will cause the stomach to produce acid.

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Potatoes may be upsetting my stomach. What about fruits like pears etc???

I can't eat potatoes because of the starch. I can't eat any tree fruits like pears, apples, oranges because they are high in fructose. Berries, grapes and melons seem to be fine with me. I have been eating 5-6 really small meals (no more than 2 cups) a day for the past week or so and it has really helped with the bloating.

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HI all,

My doctor sas there is something called molecular mimicry where the body can mistake concentrated soy for gluten. I guess the molecules are similar. He said not to eat tofu or tempeh. I also stay away from all fermented products cause I have a lot of antibodies to mold. :blink: I eat very little concentrated starchy products right now like rice. I can have a little potato and a fruit or two. Today I am very bloated. :P

I think its like everyone says, it takes a bit of time for the gut to heal, and the top part of the villi is what digests sugars. Rice and starches convert to sugar. I am limiting startches today.

Hope this helps.

June :D

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    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
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