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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.

Almost 6 Weeks Gluten Free But Still Nauseous On And Off
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Hey everyone my names melissa i just recently have been diagnosed with Celiac.This friday will be 6 weeks i am totally gluten free i am pretty meticulous hair supplys,shampoo conditioner even hand soap and dish washing detergant gluten free just to be extra careful, also all of my vitamins are gluten free.I find sometimes after i eat dinner i get nautious within an hour afterwards not always but more than i would care to remember.My stomach bloating and pain has subsided earlier on in the diet which is a plus. My depressionid better but still active and my anxiety almost completely gone, sometimes get migraines as well but those have calmed down as well.Just wanting to know if within the begginning of the healing process if anyone has gone threw this as well i feel like ive covered all grounds this can be soo frusterating:(

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Hi, I wish I could help you, but Im looking for some answers myself. Im almost 3 weeks gluten free and I had been feeling great, now only having one bowel movement a day, no gas/wind, no tiredness, no headaches, no feeling sick and no low moods. However in the last few days, say 4 Ive started to feel nauseus again and its getting me down. Ive also not been able to gain weight. My dietician asked me to drink chocolate soya milkshake everyday and I have done for about 8 weeks. Ive not gained a lb. I eat good amounts, never go hungry, eat plenty of meat, veg,fruit, potatoes, rice,nuts etc and also have gluten free pasta/bread.

I feel like Im actually losing weight bodily, my stomach/waist seems to be shrinking, even if the weight on the scales is only less 1lb or stays the same. I cant seem to get above 7 stone. Im still losing my hair.

My dietician has said to my gp that he hopes they diagnose me with coeliac based on the blood tesr results and previous history of symptoms and change in diet, but if they dont I should still stay clear of gluten for the sake of my future health.

I just dont understand what is going on. Ive made sure Im consuming no gluten at all and that nothing is cross contaminated.

I hope you find out what is going on.

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Hi to the both of you! Starting our gluten free is a huge learning curve and the body goes through crazy things while healing. To the first poster - I had the same nausea and they think it is a small bowel infection, I just completed a two weeks course of antibiotics, which caused more nausea, but hopefully this week we will see improvements. Or it could be some other sort of allergy/response to something. Who knows - the guts are mysterious and everyone's responds differently.

To the second poster - I had trouble gaining weight in the beginning and finally, after almost 6 months gluten free I have gained back the 20 lbs!! This is huge for me and a good thing. I was too thin to begin with. I can't say there was any one thing I ate or did to help gain the weight. It just took time and more time. I had lots of advice to eat highly caloric foods, but that didn't seem healthy to me. So I ate good healthy foods, added some new nuts and vegetables and ate all day. While healing, my body was constantly hungry, although I wasn't gaining weight. Then, BAM! It just started to happen and now I'm a healthy weight.

It takes a long time to do damage to our bodies with Celiacs - it takes a long time to heal.

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Hi there,

For the nausea - I found after going gluten free, I used to get nauseous at the same time every day. Cut out a few foods to experiment, and eventually found out nightshades were making me nauseous. It was quite severe, and worse the bigger alkaloid hit I got - raw green/red pepper was the worst, followed by tomatoes and potato. It only started up an hour or so after eating though, not immediate. The good news is now I can eat fresh potatoes (green/sprouting potatoes have higher amounts of alkaloids), small amounts of tomatoes etc. Peppers still not good :)

So stuff to try

- Cut out potatoes/tomatoes/tomato sauce/peppers for a meal, and see if you do or don't get nauseous.

- Keep a food journal listing what you eat and how you feel at what time. Do you always get nauseous, or only sometimes?

- Maybe you have an ulcer? Nausea is a common symptom of an ulcer, or even just mild inflammation of the stomach can cause it. Have you had an endoscopy recently? The doctor can test for H. Pylori which is a bacteria that commonly causes ulcers. Having stomach pain? If you get nauseous immediately after eating, maybe you have some stomach inflammation? Do you also get full very quickly?

- Maybe you are sensitive to milk (casein) or soy? Are you eating a lot more soy products than you used to?

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smile i have the same problem cant gain weight and def have lost a good 25 lbs in the yr in the begginning i was working out quite hard i have stopped since diagnosis tho.

Sam i just had an endo done and they thought i had h pylori which i didnt, then just went threw a gastric emptying study and the had previous bloodwork for yearly physical doctor basically said theres not much more tests we can do your fine:(Marz i am keeping a food diary and you know i did have some nausea with nightshades and possibly corn i do want to get testing done to see if they can diagnose me with other intolerances. I am lactose intolerant since i just was diagnosed the doctor said very mild damamge done.I just dont understand this naseau esepcially with minimal damage,also feel so limited as to what i can eat now i am hesitant to cut out any other foods but i know i need to do it to improve my health.What i really want to know is if i cut these foods out for lets say 6 months and my gut heals more will i be able to introduce them back into my diet again or are they permanent? Thank you for all your wonderful replies i am soo greatful to talk to people who know what they are talking about:)

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smile i have the same problem cant gain weight and def have lost a good 25 lbs in the yr in the begginning i was working out quite hard i have stopped since diagnosis tho.

Sam i just had an endo done and they thought i had h pylori which i didnt, then just went threw a gastric emptying study and the had previous bloodwork for yearly physical doctor basically said theres not much more tests we can do your fine:(Marz i am keeping a food diary and you know i did have some nausea with nightshades and possibly corn i do want to get testing done to see if they can diagnose me with other intolerances. I am lactose intolerant since i just was diagnosed the doctor said very mild damamge done.I just dont understand this naseau esepcially with minimal damage,also feel so limited as to what i can eat now i am hesitant to cut out any other foods but i know i need to do it to improve my health.What i really want to know is if i cut these foods out for lets say 6 months and my gut heals more will i be able to introduce them back into my diet again or are they permanent? Thank you for all your wonderful replies i am soo greatful to talk to people who know what they are talking about:)

You may want to try switching do a different supplement drink or maybe drop it for a bit and substitute a smoothie made with rice, almond or hemp milk to make up the calories. Soy can be a common co-intolerance for us and if it is a problem for you the nausea should get better pretty quickly. It sounds like your eating a pretty balanced diet and taking supplements so you should be okay there but it is not a bad idea to have a vitamin and mineral panel done if you haven't already.

It can take us a while to heal and ups and downs are common at first. Hope your feeling better soon.

If you think you may need a strict elimination diet an allergist who deals with intolerances and elimination diets is, IMHO the way to go. They will start you out with 5 foods that you are least likely to react to and then you will add them back in one at a time. It is a long process sometimes but well worth it if it helps.

There are folks who are able to add stuff back in that they had to eliminate after they have healed. Some are intolerant to stuff long term. I don't think there is any way for you to tell which group you fall into.

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supplement drink sounds great,i swear sometimes i get down about this diet but if you really think about it for everything we cant have there is a substitute and its only going to get better ive heard they have come a longgg way in the past 4 or 5 yrs:)Yes i know patience is the key im just seriously hoping i can have my dairy back for good one day and also my COFFEE was a huge coffee drinker but i know coffee stimulates your bowels so i gave it up and drink tea but there still something missing:/ anyone successfully drinking coffee????

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nausea is a classic symptom of hypoglycemia. are your meals well balanced for protein/carbs/fat?

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tar yes i try to make them as well balanced with meat (protein)vegtables being the biggest portion and carbs sometimes i do add a lil xtra carbs:) i was tested for diabetes and thyroid which they said i dont have however it does run in my family...

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supplement drink sounds great,i swear sometimes i get down about this diet but if you really think about it for everything we cant have there is a substitute and its only going to get better ive heard they have come a longgg way in the past 4 or 5 yrs:)Yes i know patience is the key im just seriously hoping i can have my dairy back for good one day and also my COFFEE was a huge coffee drinker but i know coffee stimulates your bowels so i gave it up and drink tea but there still something missing:/ anyone successfully drinking coffee????

I drink coffee all the time. If you really miss it try having just one cup in the morning. If it bothers you then drop it. Oddly enough I have trouble with some teas, they just don't like me not a gluten issue.

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yea raven ive been without it for almost 2 months i think thats why im soo tired to be honest since i know im not anemic lol i think im due a cup wish me luck:) also raven have you had any problems with dunkin donuts coffee or even mcdonalds mccafe drinks since i did research they are gluten free...

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yea raven ive been without it for almost 2 months i think thats why im soo tired to be honest since i know im not anemic lol i think im due a cup wish me luck:) also raven have you had any problems with dunkin donuts coffee or even mcdonalds mccafe drinks since i did research they are gluten free...

The only coffee I drink is coffee I brew myself. I got a nice thermos type cup for the car if I want to bring one with me when I am out. I would start off with homebrewed coffee to be on the safe side. Personally I wouldn't touch something made at McDonalds or Dunkin Doughnuts. Just not worth the risk IMHO.

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really??? are we all that sensitive??? also what does imho mean?? do you ever go out to eat???

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really??? are we all that sensitive??? also what does imho mean?? do you ever go out to eat???

IMHO is 'in my humble opinion'. I do go out to eat on occasion but only at places that have a gluten free menu. With cross contamination being a risk I choose not to eat at 'fast' food places or establishments where I am not sure that folks know what they need to do to keep me safe. I have very severe reactions including a 3 day GI bleed with CC so to me it is not worth the risk.

You may want to post the question about whether others drink coffee from those places you named in the products section to get the some opinions from others.

If you do chose to grab a cup of coffee from someplace like them it would be a good idea to be fully healed first. If you are not sure your body will tolerate coffee do drink homebrewed first so you don't end up wondering if you don't tolerate the coffee or if it was CC that got you.

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IMHO is 'in my humble opinion'. I do go out to eat on occasion but only at places that have a gluten free menu. With cross contamination being a risk I choose not to eat at 'fast' food places or establishments where I am not sure that folks know what they need to do to keep me safe. I have very severe reactions including a 3 day GI bleed with CC so to me it is not worth the risk.

You may want to post the question about whether others drink coffee from those places you named in the products section to get the some opinions from others.

If you do chose to grab a cup of coffee from someplace like them it would be a good idea to be fully healed first. If you are not sure your body will tolerate coffee do drink homebrewed first so you don't end up wondering if you don't tolerate the coffee or if it was CC that got you.

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hey raven im sorry to hear your reactions are soo harsh maybe with time it will ease for you:( i agree i would never go anywhere dining out without a gluten free menu maybe sushi ,as for mcdonalds and dunkin donuts i would never eat there as there food is yucky neways but it would be nice to know i can grab a coffee here and there on the run i guess time will tell, yes i did try brewing my own coffee today and feel natuious with no other symptoms i did clean my whole entire house boy did it give me the jolt i needed:) i hope within more time the nausea will diminish...

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really??? are we all that sensitive??? also what does imho mean?? do you ever go out to eat???

Melissa, I once got "glutened" from a diet pepsi (fountain drink) from Dairy Queen. I hadn't had anything to eat in four hours and got sick within five minutes of drinking the pepsi, so it had to be that. I think the DQ person put his/her hand into the top of the cup or dropped a bread crumb in by accident. I stay away from most fast food places and agree with raven that I wouldn't get coffee at Dunkin or McD. I do occasionally eat at Chipotle or Taco del Mar or PFChangs but not very often as it is not 100% safe. (I usually do it when I'm travelling or out with others and can't make/bring my own food.) I am not as sensitive as Raven but still sensitive enough. Some people are more sensitive, others less. After a while you will figure it out for you specifically. Just a warning that sometimes the longer one is off gluten the more severe the reaciton is if you do get it accidentally.

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wow thats crazy, i mean i dont want to eat out all the time but i do enjoy getting out once a month atleast you eat a chipotle?? i went there and everything was drenched in sauce they said nothing is gluten free there?? i tend to think im not as sensitive as most but my reaction def has been more sensitive now that i eliminated all sources of gluten.

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Eeeps, if you're using supplement drinks, please consider blending your own mix. Soy is often a big problem, and I tried a "gluten-free" supplement with soy in it - made me horribly nauseous, sore stomach, the works!

For elimination diets - you're free to eat as much as you like of the "safe" items, so don't worry about removing lots of items from your food list, just eat a lot more of what you can to make up for it. Add in one item at a time so you know immediately when you get a reaction, what it's to.

Eg. I eat only plain unmarinated meats, rice, potato (watch out for nightshades), fresh and unprocessed veggies and fruit. I make sauces from scratch, don't use prepared sauces. I had a big problem with egg but it seems to be getting better, so I've added that in. Dairy I was sensitive to at first, but now fine - so I added cheese, milk, cream etc.

Stick with food you've prepared yourself, if you're using a lot of packaged items, you could be getting small hits of gluten every time which causes the nausea. Nausea for me is a good indication I'm getting some gluten cc!

Just for one week try it out - just pack away the prepared foods/freeze the stuff you're not sure of, go to the grocery store and just buy awesome veggies, fruit and plain meat. Don't worry about food intolerances (unless there's something you know doesn't work well with you), and don't eat out that week. You can do this, it's only short term to see if this is causing the symptoms! If you feel much better, then you know it's some cc getting to you.

Yes, we can be *that* sensitive :/

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Eeeps, if you're using supplement drinks, please consider blending your own mix. Soy is often a big problem, and I tried a "gluten-free" supplement with soy in it - made me horribly nauseous, sore stomach, the works!

For elimination diets - you're free to eat as much as you like of the "safe" items, so don't worry about removing lots of items from your food list, just eat a lot more of what you can to make up for it. Add in one item at a time so you know immediately when you get a reaction, what it's to.

Eg. I eat only plain unmarinated meats, rice, potato (watch out for nightshades), fresh and unprocessed veggies and fruit. I make sauces from scratch, don't use prepared sauces. I had a big problem with egg but it seems to be getting better, so I've added that in. Dairy I was sensitive to at first, but now fine - so I added cheese, milk, cream etc.

Stick with food you've prepared yourself, if you're using a lot of packaged items, you could be getting small hits of gluten every time which causes the nausea. Nausea for me is a good indication I'm getting some gluten cc!

Just for one week try it out - just pack away the prepared foods/freeze the stuff you're not sure of, go to the grocery store and just buy awesome veggies, fruit and plain meat. Don't worry about food intolerances (unless there's something you know doesn't work well with you), and don't eat out that week. You can do this, it's only short term to see if this is causing the symptoms! If you feel much better, then you know it's some cc getting to you.

Yes, we can be *that* sensitive :/

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hey thank you for the wonderful info, one good thing is my belly never bloats or hurts since i started the diet which im greatful for its just the nausea:( I will def try to keep it just simple with meats and potatoes and fresh fruit and vegis. can i ask will i have to do just the meats vegis and fruit forever or will i be able to one day tolerate glutne free itemsss?? i would hate to be soo limited but whatever works:)btw sometimes i feel natuous after i eat things that def dont have gluten lie potatoes meat and vegis so sometimes i tend to thing it might be another food intolerance,will this let up once i heal more or is it there to stay??

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wow thats crazy, i mean i dont want to eat out all the time but i do enjoy getting out once a month atleast you eat a chipotle?? i went there and everything was drenched in sauce they said nothing is gluten free there?? i tend to think im not as sensitive as most but my reaction def has been more sensitive now that i eliminated all sources of gluten.

I was talking about fast food when I talked about Chipotle. I don't eat fast food normally, although I have eaten (very few things) at Wendy's, Chik-fil-a, Taco del Mar, PFChangs. Chipotle is one of the easiest places to be gluten-free, but you have to research. Search on the Restaurant thread...sorry I don't have time to post it all now.

I do eat at "good" restaurants = meaning expensive sit down.

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can i ask will i have to do just the meats vegis and fruit forever or will i be able to one day tolerate glutne free itemsss??

You should be able to tolerate more once you've healed, but everyone's different :) This is more to eliminate trace amounts of gluten bothering you - once you've got a safe list of food and not feeling nauseous all the time, you can start trying to add more variety of foods to your diet. I'd recommend adding one new item a week, eating it every day, so that if you get a reaction it's immediately obvious and you can pinpoint it to exactly what's the problem.

Gluten free items - depends what they're made from. Some people are sensitive to soy, and will probably remain so. But other flours, if they're completely gluten free, should be fine :)

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thanx marz i am keeping a food diary and i am lactose intolerant for now i still cant pinpoint a specific thing that bothers me i tend to think its a intolerance rather than a reaction to cc time will tell:)

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Remember, that being nauseated can be centered in the brain....you may be looking at issues eaten earlier in the day that have been digested and absorbed and gotten by the blood brain barrier......

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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