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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.

Anybody Here Feel Worse On This Diet?
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24 posts in this topic

I've posted this question before, a long time ago, but since we have some new members with us now I'd like to ask again if anyone has had trouble feeling well since beginning the gluten-free diet. I started the gluten-free diet in Aug.2003, and have been 100% gluten-free since, with a couple of minor mistakes thrown in along the way. I've been dairy free since Dec.2003.

Ever since this diet began, I feel extremely, abnormally, hungry and must eat three times what I used to eat just to maintain the same weight, and to get full. My biggest problem is, I just don't feel right inside, like I am raw, inflamed, and achey in my stomach all the time. My abdomen also feels achey, as if I've been repeatedly kicked in the gut, or had a hard workout and that area hurts. I also notice my abdomen is a little swollen. I feel my best when I am very full, otherwise I feel the raw ache inside and it's really disturbing. All of these strange stomach sensations began when I went gluten-free.

It's been over 6 months, and though some of this pain and weirdness has let up, it still isn't normal. I have no allergies to foods, I've seen my doctors, and they are almost out of answers. Does everyone just feel better or is there anyone like me whose body feels terrible being gluten-free?

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Unfortunately for you, as I have gone gluten-free, I have felt better. But when I was diagnosed, my gut was swollen.....and when we did a small bowel X-ray series as well as a CatScan, I showed an area of my gut that was thick and inflammed. This really concerned my doctor and we did go in and do a surgical small bowel biopsy to make sure there was no cancer or other ailment starting to develop there. Good news for me was that nothing other than celiac disease showed up.

Now after 2 months being gluten-free, my gut does not appear swollen from the outside, but I still have a long way to go for it to be repaired.

If you have not had some tests done that can show that state of your gut, you might run that by your doctor.

I am clueless, but this is my experience.

Best wishes to you. Wouldn't it be nice if medicine really was an exact science? It sure would make our lives alot easier.

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gillian502

Sorry you don't feel better yet. I

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Blue Diamond plane almonds are gluten-free not all the bbq flavors but the plane ones are completewly gluten-free

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Blue Diamond plane almonds are gluten-free not all the bbq flavors but the plane ones are completewly gluten-free

I was eating the roasted and salted ones.

Maybe that's the issue?Or are those ok too? :unsure:

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roasted and salted ones are gluten-free too just not the barbeque ones

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Thanks everyone. Yes, I'm awaiting test results on my my latest Celiac panel. The blood I had taken after 3 months on the diet still showed me to be in the positive range, though better than when I was initially diagnosed. Now we'll see where I am at 6 months gluten-free.

I was biopsied by endoscopy, and that confirmed the Celiac diagnosis. On Apr.12th I will have a colonoscopy, which I'm scared to death about, but need to rule out other diseases. I've always wondered if maybe this isn't Celiac but something that looks like Celiac...but I guess that wouldn't be possible if my IgA and other blood tests were clearly positive, right?

Also...what does it feel like to be on Prednisone? That might be in my future, and I've been holding off on that, but would like to know what I'm in for if I ever do give in and take it.

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I've only been taking the Prednisone for 3 days and I haven't notice much if any any difference in GI symptoms.But I know that I'm having a hell of a time sleeping.Up at 4 am every morning.Not somthing I want to be on because of all the long term side effects-I figured 3 weeks would be ok to see if it gives my insides a chance to heal.

When I had a colonoscopy I was very uneasy at what they would find. But you mine as well know so they can treat you if it's somthing else.I'm still unclear about the crohns I may have but I won't know until I get my blood tests down.

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Gillian,

Since being on this gluten free diet for over a year now I have the same feelings you do in the stomach and get very, very hungry and feel that I have to eat right now in order to feel better. My stomach will feel raw which I never had before. After eating I will start to feel better. I had my tests done after six months and was down to negative in all but one which unequivocal, so I know I am eating gluten free. However, I feel weird most of the time and my small intestine will feel different even now, especially when I am sitting after eating. I tend to lean to one side or the other to be more comfortable and am not able to eat all foods even though they are gluten free. The doctors don't seem worried about it though and sometimes I feel ok. I have found some things I used to eat bother me now, like corn which I love. I also eat more than I ever did before just to maintain my weight so I guess I am not absorbing everything even now. Just recently, however, I gain about four pounds so that was encouraging. I also cannot eat any rich foods or I have problems.

Linda B.

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Linda,

Thanks for answering. It makes me feel a little better knowing I'm not totally alone in feeling strange on this new diet. It's been 6 months for me and I thought my body would've adjusted by now, but unless I'm full I'm just not comfortable. I feel like I have a completely different stomach since beginning this diet!

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Gillian,

I remember the hunger and weird stomach sensations I used to have, and I think they took the better part of a year to dissipate. It's not quite the same as your situation, though, because 1.) I wasn't quite gluten-free at the time, and 2.) I was exclusively breastfeeding a young baby. I, too, used to have to eat enough for three, and feeling anything less than overstuffed was my cue to get up and get a snack. Seriously, fifteen minutes after I felt "normal," I would be hypoglycemic--I timed it a few times!

I don't really know what to suggest, although I wish I did! I pretty much just waited it out--although I did start seeing a naturopath, who put me on some nutritional supplements that may have been instrumental in normalizing my digestion. Might that be an option for you? I can certainly understand it if you are reluctant to trust an alternative practitioner; I was, too (and I'm still not indiscriminate with my trust), but circumstances conspired to lead me to this doctor, and I'm glad they did! :)

At any rate, I hope you start feeling better soon!

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Hi all,

I am a very recent member of this forum but I've been reading your exchanges since january. It's so comforting! Many times I felt like participating, but since english is not my first langage (I'm french Canadian), I've been shy to do so. But the genuine sens of mutual aid in a nonjudgmental way that caracterise these exchanges did the trick to convince me to add my word, even if that implied that I will make many mistakes writing in english...

So, to make it brief, I would summarize my small history to say that after beeing sick for at least twenty years (I'm now 35), I've been gluten-free for two years and feeling much better. I've not been officially diagnosed with celiac's disease since my IgA blood test was negative but both my doctor and I agreed that since I cannot eat a bit of gluten without being sick for days, this was enough for us to be convinced of the need to follow the gluten-free diet.

In response to the initial question of gillian502, I would add that adjusting to this new diet takes time, but psychologically and physically. In my experience, I'd say that to avoid gluten, I initially had the tendancy to restrict my meals to meat, vegetables and fruits since the rest of my family (husband and three young kids) would eat their pasta or else while I simply cut that item out of my diet. The sensation of emptyness (weird hunger and even nausea) I felt not long after the meal was unbearable. The trick for me was to start cooking a lot of gluten-free specific recipe with carbs (muffins, cookies, squares, pasta, bread, pancakes, etc.), freeze them, and eat every two hours or so something that includes some carbs. Freezing them allows to have them handy whenever I crave for it (I don't leave home without some food in my bag!). I always eat thirty minutes before going to bed at night (ex.: a bowl of gluten-free cereal with fruits and soy milk) otherwise I'm nauseous around 5 in the morning. We can call it the pregnant wowen way of eating! With reasonnable portions, my weight is very stable.

I hope my experience with the gluten-free diet can be of any help.

cmm

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Hi CMM, welcome to the board! Just jump in any time and make yourself at home here :rolleyes:

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Well It's good knowing I'm not the only one with weird hunger pains around here! I'm going to see a naturopath in April, it was suggested to me by my mother and I think I'll try it now that I'm hearing it really puts people on the right path to good health. Anything that would aid in the digestion of my food would be a much-needed good thing.

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It's interesting to read about these stomach symptoms because they are very similar to my trouble. I've had lots of nausea and stomach ache for years, sometimes a burning kind of pain, even before I went on the gluten-free diet, and it's continued infrequently even now I'm on the gluten-free diet (one of the reasons the doctor is doing an endoscopy soon). That weird hungry feeling describes it very well! Sometimes I have a type of nausea that seems to veer into hunger, and after feeling like I might throw up for a few hours, I start to feel like if I can just eat I'll feel better. And then eventually I eat and I do feel better. The pain is pretty centrally located, in the middle around the navel. I'm amazed that other people have experienced a similar symptom and feel it must be somehow connected to celiac. I described it to my doctor and he thinks it sounds acid related, which is why he's checking for peptic and duodenal ulcers as well as acid reflux, so maybe that's it...

Ellen

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I wrote earlier and have that awful hungry feeling and the pain in the area around the navel. I do take Protonix and it helps to curb the pain in that area. Just to be sure I need to take it, I have stopped a couple of times and then the uncomfortable feeling comes back so it seems with this disease we may just have too much acid in that area. I know I sleep better when I am taking the medication otherwise I wake up and have to eat or I cannot get back to sleep.

I am just hoping this goes away after awhile--for me it has been a year and three months and yet I know other Celiacs who have been on this diet for over four years and they do not seem to have this problem. I have never been a big eater so this is very trying to have to have food with me all of the time.

Also, I might add that on endoscopy it did not show that I had reflux or an ulcer but the doctor put me on the medication anyway to see if it would help.

Linda

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Like someone said earlier, I'm so glad to have found this site and discover that I'm not alone in experiencing adverse symptoms on a gluten free diet.

We don't have anything like this message board in England (that I know of), it's an excellent idea!

I not only get the nausea but everytime I eat even a small meal I get a really strong thumping heartbeat that lasts for about an hour. Anyone else get this?

Regards, Bob.

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Yes my heart rate does increase immeadiately after eating. I have a heart condition called "POTS" which means my heart is healthy but it beats much too fast, and I figured my problems were due to that. I do notice it's worse after eating, though, so maybe it is connected to celiac disease. Does your stomach literally feel different now on this diet? I have never had so many stomach and abdominal problems in my life until I began this diet.

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One of the food allergy tests that I have done is to take your pulse before eating, eat some of a single food, then 20 minutes later take your pulse again. If it is faster, you might have an allergy. celiac disease does have an increased incidence of food allergies.

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No Giliian502, I can't say that my stomach has got worse since I started the gluten-free diet, but it hasn't improved either. I still get the same nausea, lethargy and thumping heartbeat after meals, about which I went to the doctor in the first place.

I have had 2 follow-up endoscopies which confirm I'm a Coeliac, although the consultant thought my gut should have recovered more than it has.

So I have no choice but to stay gluten-free, although I suspect if I came off the diet I wouldn't feel any the worse for it! I tried going dairy free but that didn't make any difference either.

We'll just have to live with it I suppose!

Bob

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You were wondering about Predinisone? I have been on it for about 2 months. I have noticed that I have the moon face with a double chin now. and in the beginning I had an ENORMOUS appetite. But please do remember that I have been on it for a LONG time. And remember to have them taper you off the medication and not just take you off it all the sudden.

Beth

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I was diagnosed about a week ago. I am having a ton of burning in my chest and stomach area, as well as a pain under my ribs. Occasionally I have this nausea and painful gas. I have been very strict with my diet, buying gluten-free foods, reading labels, calling manufacturers when in doubt, and now watching for cross-contamination. The crazy thing is, these symptoms were what led me to go to the doctor in the first place (plus I was incredibly bloated). These symptoms came on very suddenly and with out warning. So, the dr. had the blood work done. I came up positive for only half of the antibodies (??) or something like that. Or it was explained to me, one test came out positive, the other was negative. whatever...I cant say I understand. Now I have to go to a gastroenterologist because the diet hasnt changed the symptoms (though, I would say, I have more energy than before). I'm at a loss, and feeling rather frightened. I just dont know how long I have to be on the diet before feeling relief, or is there something else wrong?

Melanie

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Melanie,

I've asked myself that same question a hundred times: Is there something else wrong with me? I've been gluten-free for 7 months with few mistakes, and even did a 4 month stint being dairy free, and still no change. I've noticed the small improvements I've already mentioed, like the weight gain and more energy. But the symptoms I've gotten in return for being gluten-free are almost as bad as the ones I had before my diagnosis. It hardly seems worth it to follow this diet, but I'm hanging in there only because I wouldn't want to risk my life and develop lymphoma or something and then have only myself to blame. I'm having a colonoscopy soon which will tell me more. If you still feel bad after a couple months on the diet, you probably need to have more testing done, or at least see what your doctor suggests. I wouldn't worry about still not feeling great only a week or two into the diet, though. It's possible that you aren't totally gluten-free yet, this is new and you might have made a few mistakes, or your body's still adjusting.

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Bob

I also have a pounding heart after eating, I thought I was going nuts! There are times during the day I get dizzy on the right side of my head and at that time I also experience headaches. I do feel somewhat better after eating when this happens. I know I sound like I'm complaining, but does anyone else get a nagging pulling pain under the right shoulder which goes up into the neck and head? There are times when I don't have the symtoms, then out of the air, my shoulder, neck, and head pain comes back. I know its from Celiacs, but I can't figure out why its happening. Any suggestions?? Thanks, Tye-Kon

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      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.  
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      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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