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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.

How Long Did It Take Your Bloating To Go Away?
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I'd appreciate any info about this.

Thanks! :)

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Does it ever go away? <_< Since I had surgery all I can wear are Woman Withnin plus size jumpers, or those huge Just my size lounge shirts-anything with a waistband is out.Everything has to be four sizes too big. I need a small portable tent that I can just stick my head out of :lol:

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I'd appreciate any info about this.

Thanks! :)

By completely going off all trace glutens it took me roughly a month to get rid of all bloating. Originally when I thought I had gone off all gluten (and had as far as I knew) I got rid of a great deal of bloating within 3 months. I also got stronger nails, hair improved and my teeth started to harden according to the dentist. Previous to when I seriously went off wheat and rye (when I was in my late 20's before I knew much of anything about all this) I noticed I would lose weight when I went on a rice diet--and gain it back when I ate wheat and rye -- almost immediately.

If you have been on a gluten free diet for a while and you are still having bloating you could have a yeast or candida overgrowth problem--or you might be eating something you are still allergic too. For myself I can't eat sugar or even dried fruit without getting a very smelly gas. Thank heavens for Stevia I say! A lot of pre-prepared food made for celiacs has a lot of sugar and/or bleached white rice which converts to sugar quickly. It is thus better to make your own when possible. And rely more on vegetables, some roots, some meat, some soaked seeds or nuts (to remove the growth inhibitor--8 hours soaking is enough) and some (non sugared) fruit.

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Thank you so much for your answer. Could you please explain what a growth inhibitor is?

If you have Celiac, are you more sensitive to sugar, because I've been eating a lot of (gluten-free) lollipops -- I've found they stop me from wheezing. The wheezing started about a month ago, as I became more run-down and malnourished.

I've been eating hard-boiled eggs and some white rice and I've wanted to add yogurt to my diet, but I'm trepidatious. There's nowhere to cook right now, so it's tricky. I would greatly appreciate any other suggestions you have. Thank you.

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Thank you so much for your answer. Could you please explain what a growth inhibitor is?

If you have Celiac, are you more sensitive to sugar, because I've been eating a lot of (gluten-free) lollipops -- I've found they stop me from wheezing. The wheezing started about a month ago, as I became more run-down and malnourished.

.

Have you had a chest x-ray and/or lung function test since the wheezing started?

http://www.pubmedcentral.nih.gov/articlere...gi?artid=499158

This paper describes the necropsy changes in a patient with coeliac disease and respiratory disease and the pulmonary biopsies from 13 other coeliac patients with physiological evidence of a parenchymal lung disorder

http://www.ncbi.nlm.nih.gov/pubmed/6101248

An association has been suggested between celiac disease and diffuse interstitial lung disease of the hypersensitivity pneumonitis type in several reports from Europe. The present report consists of a study of 18 North American, biopsy-proved celiac patients, who were compared with an equal number of control subjects balanced for age, sex, and smoking. The celiac patients showed no evidence of interstitial lung disease as assessed by chest roentgenograms and pulmonary function tests. However, a history of asthma or chronic cough was present in a higher proportion of the celiac than control subjects
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Thank you so much for your answer. Could you please explain what a growth inhibitor is?

If you have Celiac, are you more sensitive to sugar, because I've been eating a lot of (gluten-free) lollipops -- I've found they stop me from wheezing. The wheezing started about a month ago, as I became more run-down and malnourished.

I've been eating hard-boiled eggs and some white rice and I've wanted to add yogurt to my diet, but I'm trepidatious. There's nowhere to cook right now, so it's tricky. I would greatly appreciate any other suggestions you have. Thank you.

I have read that that is often the case that one is more sensitive to sugar when one has celiac. However like with anything it doesn't always happen that way. It seems in part to be due to how long you have been struggling with this without changing your diet. I have read that it helps against it happening if you were breast fed as an infant. Exercise also helps against this tendency too.

Have you tried eating root vegetables (you can just slice and boil them) and cooked vegetables? For now you may need to eat cooked foods. The lining of your gut may be extra sensitive. Taking soothing herbs like marshmallow root caps and slippery elm caps will help reduce the sensitivity. (You can also get them in bulk as powders and mix with cold water--then pour in some hot water and mix again using a fork in your teacup).

Later raw vegetables will be just fine and probably then you can add other items--like the soaked seeds and if you are lucky the nuts. But for now just do the basics and you will probably feel a lot better.

A growth inhibitor is what naturally coats the seed or nut to keep it from sprouting before it has sufficient water to grow. The thing is is that it makes the seed or nut harder to digest for humans--unless its soaked first.

If you have candida or some other fungal or yeast problem, whole grains are better than bleached ones like white rice. Try alternative grains like washed cooked quinoa, amaranth, teff, sorghum--as well as gluten-free corn and brown rice--though these last not constantly at first since in sensitive folks they may cause an allergy due to leaky gut situation caused by celiac.

If you suspect the yeast etc. overgrowth, try taking gluten free probiotic capsules and pao de arco capsules or boiled tea (10 minutes slow boil--1 tsp. per cup water).

Is there really no place at all to cook? I suggest simple soups if you only have a hot plate and a pot to cook with. You could have a little mini-refrigerator of your own if you live with others or have limited space. Be careful to not share pots, utinsils etc. if at all possible.

You need to use new pot holders and a cutting board and any wooden spoons or bowls. Any bowls or pots that have built up food from your gluten days have to go since otherwise you will get cross contamination (CC).

As far as the wheezing goes, I suggest you try using licorice root if you have low blood pressure, and a small amount of lobelia. The lobelia will calm your lungs down--but don't use very much since otherwise it can become an emetic. You might also want to try eyebright, and/or mullein as a tea. A bit of skullcap, chamomile, lavendar, rosemary, melissa or mint tea can also help calm the nerves--which often helps the lungs.

If you use the herbs, avoid any alcoholic tinctures since the alcohol is usually made from grains. Using herbs in bulk reduces the cost, just make sure its not cross contaminated with gluten!

Hope this helps.

Bea

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For me, the bloating didn't go away until I quit all the OTHER foods that were also a problem.

Dairy & soy are the main ones I think.

Since quitting soy, 1/2 my pants are too big to wear!

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Thank you so much for the terrific advice. Would slippery elm lozenges be effective? Can I do anything besides elevate my legs for the leg swelling? Anything topical I can use for hives? How much do I really have to worry about CC; for example, if I get rice from a restaurant, do I need to be concerned with whether they just prepared anything with gluten? I never did in the past, but is the idea that once you have an attack, your body becomes sensitized? It's hard to understand how I could eat a whole baguette in December without any problem, and now I might get sick if I buy something at Trader Joe's that says "Prepared on machinery that uses wheat." Are celiacs able to eat in restaurants? Will I be able to have corn tortillas, for example, at a place like Chipotle? I know I'll have to change my lifestyle and start cooking, but right now I'm just so weak from malnutrition and having to get up 6 or 7 times a night to pee, and since I've stopped eating gluten, my mouth is very dry, as if it's filled with cotton, and I'm thirsty all night long.

It seems paradoxical for my legs to be swollen and at the same time, I can't quench my thirst. If I buy white rice from a Chinese restaurant, do I have to be worried about CC? Do you have any idea how long it takes to be able to eat raw foods, such as a salad again? I have found that lollipops stop the wheezing, but should I be concerned about the sugar?

One last thing -- if I still have some hives, does that mean the gluten is still in my system?

Again, thank you very much, I really appreciate the help.

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What does your doctor say about the leg swelling? And the thirst? Stuff with those symptoms (diabetes, kidney failure, congestive heart failure) are nothing to mess around with.... :(

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What does your doctor say about the leg swelling? And the thirst? Stuff with those symptoms (diabetes, kidney failure, congestive heart failure) are nothing to mess around with.... :(

Itchy girl is right, you should have yourself checked out. If you have kidney disease, congestive heart failure or diabetes you need to know.

However it really is possible for the gluten to be doing this to you or at least exacerabating your condition. Celiac is after all not just an allergy; it is an autoimmune disease that often precipitates other degenerative diseases. Exercise could also help. I get swollen legs if I get no exercise, as did my grandmother. However we are also at risk for kidney disease. This is why I got into using lots of kidney and liver cleansing and soothing herbs like uva ursi (for kidneys), dandelion root (for liver)and burdock root (kidneys and liver) and general intestinal tonics like yellow dock and Oregon Grape Root and pao de arco. The marshmallow root actually is very good for the kidneys as well as the intestines. Its also really important to eat a lot of green vegetables to revitalize your blood out as well as clean out your intestines.

Slippery elm caps are a lot safer than lozenges. Who knows what is holding the lozenges together?

It does come as a shock, but once you avoid gluten, if you have celiac, the more reactive you become to trace amounts. This is both a curse and a deliverance. The deliverance is more important -- however the curse is really an unfortunate pain in the ass but there you are. Its better to feel better overall and not risk getting a really serious degenerative disease (or two or three! etc.).

I got sick as a result of several CC's. I had basically avoided gluten for years but not the trace glutens. After a month of strict avoidance I started getting these shooting D episodes from out of nowhere (it seemed) and then got ill with bronchitis. Two more CC's (each time after I thought I was well again) and here I am with my bladder and kidney inflamed. Right now I still can't eat meat or fish without getting my urinary tract system all messed up. However its worth the trouble going completely off G since I am at risk for glaucoma, continued degenerated nervous system, as well as have aching joints and heart disease etc. if I continue eating the trace gluten.

The thing is that trace gluten from eating rice etc. prepared in pots or using dish-ware used for glutenous items can be a real problem. If you could talk to the owners of the restaurant, you might be able to arrange a deal for them to prepare your rice in a special gluten free pot with gluten free potholders and spoons etc. with strictly gluten free brown rice--after the food preparer and server washes their hands. It seems crazy but there you are, its a real deal as you will discover if you explore celiac.com. We are not making this up.

If you cook your own food however you wold have more control of the situation and you would start to feel better sooner since the very real probability of cross contamination would then be eliminated. If you can't cook yourself, maybe you could hire someone to help you? They could make a bunch of stuff and then freeze it perhaps?

Can you get tests for malabsorption? Its common to have malabsorption with celiac.

You thus might really need to be taking a good B complex (I like the gluten free co-enzyme B complex from Country Life taken away from food like early in the AM or late at night--best to avoid sorbitol which often has gluten in the sublinguals) plus vitamin D. I used to have a racing heart and aching swollen legs and feet for instance which went away since I started using the co-enzyme B complex. Taking digestive enzymes like bromelain/papain and pancreatin can help do wonders by the way.

Hope you are starting to feel better by the way! If not, well just hang in there.

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I just started taking a Centrum multi-vitamin. Is Centrum a good vitamin? It says they're gluten-free. I crush it and eat it in baby food applesauce because I can't swallow it whole. It lists all the B-vitamins. What about eating papaya instead of taking papain?

Thanks so much for your thoughtful reply.

One more thing: I think I'm going to start taking Citracal. Is that okay for one's stomach?

I'm also drinking one or two Ensure a day, so I don't want to OD on vitamins, but I'm so fatigued, I do think malabsorption is a problem.

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Thank you for your excellent advice. I'm going to pick up the B-vitamins you suggested. I have very very low energy after one week without gluten, except for small amounts I was getting by accident. I'm drinking one Ensure every day and taking a Centrum daily vitamin, but could you also please recommend some iron supplement that would be easy to absorb -- perhaps a liquid iron supplement. I'm a little concerned about taking that with the iron in the Ensure and the iron in the Centrum, but I'm so weak, I think I need more iron than I'm getting. Is there a liquid iron supplement that 's particularly easy to absorb? Or do you think it would be better to try eating some beans? I get painful trapped gas pockets, so I'm worried about eating beans now that I've stopped Beano, but I have a feeling I really need more iron. I haven't eaten red meat for years, or I would try liver. At any rate, I'm not sure if it would be easier for my body to absorb the iron from food or supplement right now. I used to have tons of energy before this gluten thing started, and I'd appreciate any advice about how to increase my energy level. Or does it just take a while after you've cut out gluten? Thank you very much in advance.

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I couldn't figure out why I'm so exhausted, then I just discovered that the Centrum multi I'm taking contains no iron, and I'm having one Ensure a day, but that only contains 25% of my iron, and I think I'm having absorption problems. My feet are swollen because I'm not absorbing enough protein, even though my heart is fine. Can anyone recommend a good bio-available iron supplement that won't upset my stomach or cause constipation, which is the last thing I want right now, because I have so much trapped gas -- otherwise, I'd start eating better. I don't eat red meat, but I thought I was getting iron from chicken -- I just looked it up, and see chicken has very little iron. Is there a gluten-free liquid iron supplement that's easy to absorb and gentle on the stomach? I have no way to cook right now, so I have to rely on food from Whole Foods, etc.

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I couldn't figure out why I'm so exhausted, then I just discovered that the Centrum multi I'm taking contains no iron, and I'm having one Ensure a day, but that only contains 25% of my iron, and I think I'm having absorption problems. My feet are swollen because I'm not absorbing enough protein, even though my heart is fine. Can anyone recommend a good bio-available iron supplement that won't upset my stomach or cause constipation, which is the last thing I want right now, because I have so much trapped gas -- otherwise, I'd start eating better. I don't eat red meat, but I thought I was getting iron from chicken -- I just looked it up, and see chicken has very little iron. Is there a gluten-free liquid iron supplement that's easy to absorb and gentle on the stomach? I have no way to cook right now, so I have to rely on food from Whole Foods, etc.

I can't take iron so I will leave those suggestions to others but I want to ask about the issue of not having anyplace to cook. I am taking that to mean you don't have access to a kitchen. You may want to consider picking up a rice cooker or a crock pot. Perhaps that could give you a way to cook something without a stove and reduce your chances of CC from store prepared food.

I don't know if you are but if you are a college student you should let the school know of your diagnosis and restrictions. They will most likely either let you cook in your room or they will perhaps have dorms or spaces available with a kitchenette. My DD's undergrad school put her in senior housing her freshman year to accomodate her need for a private kitchen.

It is hard and it takes time to heal, I hope you are feeling better soon.

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Thanks so much for your thoughtful response. Do you mind if I ask why you can't take iron? The reason I'm asking is because I'm about to buy some and I'm afraid it will upset my stomach or constipate me. I can tell I really need it because I'm very pale and weak and even if I didn't have a malabsorption problem, I realize I'm getting little iron from my food. Your suggestion is a really good one, but for the sake of speed, I was thinking of trying to find a restaurant with a rice cooker this afternoon and eating white rice fortified with iron, although I'm not sure how much that would give me. I'm wary of an iron supplement right now, because I'm already so bloated and have gas pains just from trying to eat simple foods like chicken, steamed vegetables, and hardboiled eggs. Do you have any idea how long it takes for the inflammation in the intestine to heal after you've gone gluten-free? Days? Weeks? Months until you start to feel better? Thanks.

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I

I'm also drinking one or two Ensure a day, so I don't want to OD on vitamins, but I'm so fatigued, I do think malabsorption is a problem.

You can drink 5-6 ensures a day. The only vitamin you have to worry about the upper limit on in Ensure in A and my dietician said I'd have to drink 8 a day, long term for that to be a problem. If you're drinking over 5 a day just skip the centrum.

Pancreatic digestive enzymes come in a handy powder you can also mix with applesauce. Little kids with cystic fibrosis take these meds, so they all come in easy to swallow little kid formulations. :)

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You can drink 5-6 ensures a day. The only vitamin you have to worry about the upper limit on in Ensure in A and my dietician said I'd have to drink 8 a day, long term for that to be a problem. If you're drinking over 5 a day just skip the centrum.

Pancreatic digestive enzymes come in a handy powder you can also mix with applesauce. Little kids with cystic fibrosis take these meds, so they all come in easy to swallow little kid formulations. :)

Are you sure the Centrum multi vitamins are gluten free? I looked at them in Safeway last night and all had gluten, even the liquid kind had grain based alcohol.

Don't know about the ensures but from the above it seems it may be OK. Doesn't it have soy however? Some celiacs can't tolerate soy. Might be worth investigating--and try instead a basic sweet potato/brown rice/washed quinoa, vegetable, meat or sprouted seed or bean diet...

You could invest in a slow cooker if you don't have regular kitchen facilities and maybe a rice cooker too and a toaster-oven and hot plate with a couple of pots plus a mini dorm refrigerator. It will cost you way less than eating out like you have been and way reduce your risk of cross contamination fro other people handling gluten all day.

The quinoa is important to wash since its growth inhibitor before washing is nasty for humans. I rinse them twice. You have to use a tightly woven mesh sieve since the seeds are so tiny. However they are quite tasty and completely gluten free.

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Thanks for your reply. What do the pancreatic enzymes do? Would they reduce the bloating? I called the people at Ensure, who said you have to worry about the upper limit of manganese, but if you're not taking a vitamin, you can have up to eight a day. Do you have any idea what happens if you ingest too much manganese or Vitamin A, because I could really use the extra protein -- I was told my legs are swelling possibly due to insufficient protein in my bloodstream.

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Thanks for your advice. I'm really trying to get some kind of cooking system set up, but it will probably take a few weeks at least, and I'm trying to figure out how to eat in the meantime. If you get take-out rice from a Chinese or Mexican restaurant, do you really need to worry about CC? I've had bad bloating and gas pain for the past few days, and I wonder if it could be from the soy in the Ensure. I'm starting to freak out because I feel like I can't eat anything, and this is all very new to me. I'm going to switch to Women's One-A-Day vitamins from Centrum because I need iron and I'm afraid an iron supplement might constipate me -- beans would be too gassy, and I'm hesitant to eat raisins. Do you think Women's One-A-Day are safe, because the company says it can't guarantee its sources are free of gluten. As an alternative, I was thinking about getting liquid iron droplets for babies, because it would be gentler for my stomach. I'd prefer taking women's One-A-Day if you think they're okay gluten-wise.

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PS A pharmacist recommended the iron supplement Fergon. Do you know if that will irritate my stomach or cause constipation? Thanks.

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Thanks for your advice. I'm really trying to get some kind of cooking system set up, but it will probably take a few weeks at least, and I'm trying to figure out how to eat in the meantime. If you get take-out rice from a Chinese or Mexican restaurant, do you really need to worry about CC? I've had bad bloating and gas pain for the past few days, and I wonder if it could be from the soy in the Ensure. I'm starting to freak out because I feel like I can't eat anything, and this is all very new to me. I'm going to switch to Women's One-A-Day vitamins from Centrum because I need iron and I'm afraid an iron supplement might constipate me -- beans would be too gassy, and I'm hesitant to eat raisins. Do you think Women's One-A-Day are safe, because the company says it can't guarantee its sources are free of gluten. As an alternative, I was thinking about getting liquid iron droplets for babies, because it would be gentler for my stomach. I'd prefer taking women's One-A-Day if you think they're okay gluten-wise.

If the company can't guarantee it, its suspect, period. I got my mom a 1 a day women's vitamin I'll check on tomorrow.

I am sorry you are going through all this. You just have to do the best you can. It seems you aren't really on a truly non gluten diet for now so maybe its OK not to sweat it so much. You are probably less reactive now than you would or will be if your were completely gluten free. So just do the best you can for now and don't sweat it. The Asian food minus the soy sauce (you can provide your own gluten free variety) and the Mexican food is fairly safe. The underlying gluten will still bother you and undermine your health but you can probably live with it for a couple of weeks. Its only after you are completely gluten free that your body tends to get so dramatically reactive with trace amounts of gluten.

Meanwhile you can use marshmalllow root powder (assuming you can find it) to calm down your intestines or even natto cakes for fibronylitic enzymes assuming you can stand the taste and handle the soy. Papaya and pineapple are good too as sources of digestive enzymes if you don't want to take bromelain/papain. The pancreatin is really helpful for digesting things better in your intestines.

Am wondering why you can't eat meat? Are you a vegetarian? If you must, eat beans and as previously suggested sprouted seeds.

Bea

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Your advice is so helpful. I thank you enormously. The transition to non-gluten is confusing and at times, frightening, and I don't know what I would do without this website and kind people like you. I'm not a strict vegetarian because I eat poultry, and before this started, I ate sardines, salmon, etc. -- I don't know why, but I tried sardines the other day, and boy did I regret it. I think you may be right about the soy in the Ensure, so I've stopped that, but I can tell I'm not getting enough protein because my feet are still swollen, and I was told that's the reason. I was taking Centrum, but I called the manufacturers yesterday and I was told that the new formulation is not necessarily gluten-free. I'm going to Whole Foods on a quest for a gluten-free multi-vitamin that contains iron. If you happen to be on the Net right now and can tell me if Women's One-a-Day is okay, I'll buy that. I'm also going to try papaya. Thanks again for your invaluable advice.

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Man, if I'd have tried to eat sprouted seeds back when I was recovering I would've been stuck to the toliet like that woman in the news :lol:

If you'd like to avoid the soy in Ensure (although I've never had any problems with minimal amouts of isolated soy protein) try Boost or Boost Plus.

Have you tried baby food?The Baby food rice cereal with formula in it is great.

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Man, if I'd have tried to eat sprouted seeds back when I was recovering I would've been stuck to the toliet like that woman in the news :lol:

If you'd like to avoid the soy in Ensure (although I've never had any problems with minimal amouts of isolated soy protein) try Boost or Boost Plus.

Have you tried baby food?The Baby food rice cereal with formula in it is great.

Just goes to show how everyone is different. I just suggested sprouted seeds as a source of protein. I have a strong stomach even though I have had celiac forever. I do use marshmallow root and a variety of herbs to detox my liver and intestines which has helped me tolerate more than perhaps most.

The sprouted seeds could be ground up if the seeds were too irritating. My brother who has Down's and celiac certainly couldn't handle eating the seeds without pureeing--or beans either. He also has trouble with eating certain green vegetables for the same reason. Slowly as he stays off the gluten he has been improving, though there are those times he goes off diet like recently at an Easter Egg party. Then he and we certainly pay for it!

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