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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.

Gritty Loose Stools From Fiber
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hi, my son hasn't been diagnosed yet because the pediatrician wants to find out if my tests come back positive first (which I think is just stupid because he has symptoms! so why should it matter if I have it or not!) anyway, if he has raisin bran or shredded wheat of any other high fiber cereal for breakfast his stools are like sand. he will be 4 in july and is finally just now almost completely potty trained, but when you have to change a diaper or clean up an accident it smells like something died in his diaper and its like trying to clean wet sand off of skin... totally impossible and goes through like a whole package of wipes at a time! anyway... just wondered if anyone else has had this experience or not. he also is very very irritable and moody and will cry about things that haven't even happened yet. one example of his fussiness is that yesterday my mom put in a dvd for him to watch, it was like 10 minutes into the movie and he starts crying and screaming about wanting to watch 2 movies... he never asked if he could watch another one when that one was over or anything... just started freaking out like if someone had told him no. he doesn't like milk on his cereal but will sometimes want it on and then cry when he sees that its there. I don't give in to him, I tell him he already changed his mind once and I'm not going to make him a new bowl of cereal... anyway... he's just really hard to live with sometimes. he doesn't seem to be able to concentrate and you have to tell him several times what to do its like he's in his own little world. he gets really easily overwhelmed cleaning his room and even cries that he doesn't know what to do if you're in there helping him.

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Your son sounds like my oldest grandson. He was terribly emotional, and would cry for hours, totally inconsolable if you even so much as looked at him the wrong way! Until he was nearly five he also NEVER had a solid bowel movement. It was always at least really mushy. Plus he was always ravenously hungry, but so thin you could count his ribs.

Finally my daughter put herself and all five children on a gluten-free diet when Ethan was almost five. Within days he was a different child. He is now happy, and rarely cries any more. He also started gaining weight immediately, and has had normal bowel movements ever since starting the gluten-free diet. He is also dairy free, and is intolerant to nightshade vegetables.

Why do you want to wait at all to put your son on the gluten-free diet? NOBODY can stop you from feeding him whatever you choose, it isn't any of the doctor's business, even.

At his age, putting him on the gluten-free diet is the most reliable test. Blood tests and even biopsies are notoriously unreliable in children under six.

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I agree with Ursa Major. It doesn't sound like fiber is the problem at all, but gluten. IMO your child should be on the gluten-free diet immediately. As was said, the tests aren't likely to be reliable anyway. The gluten-free diet is the best test, especially in young children.

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Your son sounds like my oldest grandson. He was terribly emotional, and would cry for hours, totally inconsolable if you even so much as looked at him the wrong way! Until he was nearly five he also NEVER had a solid bowel movement. It was always at least really mushy. Plus he was always ravenously hungry, but so thin you could count his ribs.

my son is that way too! constantly begging for food! when he was a baby he would eat a whole yogurt 2 pieces of bread, 1 1/2 bananas and still be hungry! he's still that way but more and more the time, I give him something he asks for and he starts crying that he wants something else. at least he likes a variety of foods and loves almost all fruits and vegetables. I think the hardest part of a gluten free diet for him is gonna be crackers. anyway, I glad its not just me thinking that his stools are odd! he is getting skinnier every day (his weight seems to still be going up and he's tall for his age) when he has his shirt off you can see all his ribs and his spine sticks out. lately his pants have been falling off... its like his little bum is disappearing!

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my son is that way too! constantly begging for food! when he was a baby he would eat a whole yogurt 2 pieces of bread, 1 1/2 bananas and still be hungry! he's still that way but more and more the time, I give him something he asks for and he starts crying that he wants something else. at least he likes a variety of foods and loves almost all fruits and vegetables. I think the hardest part of a gluten free diet for him is gonna be crackers. anyway, I glad its not just me thinking that his stools are odd! he is getting skinnier every day (his weight seems to still be going up and he's tall for his age) when he has his shirt off you can see all his ribs and his spine sticks out. lately his pants have been falling off... its like his little bum is disappearing!

Your son sounds typical for a child with celiac disease. The sooner you get him off gluten, the better. There are nice gluten-free crackers out there, that really shouldn't be a problem. Make sure you eliminate dairy at least for a few months as well, and please don't give him soy instead. Both dairy and soy can hinder healing. Rice milk (not Rice Dream, it is not gluten-free) or almond milk are better substitutes.

Ethan would eat and eat, and when my daughter finally told him the meal was over, and he wouldn't get anything until the next one, he'd get terribly upset. Now he is satisfied with a regular sized meal and fruit in between for a snack.

Make sure you give him enough fat (coconut oil is a great and healthy source of saturated fat, as long as it is non-hydrogenated) and protein. And you may want to have him tested for nutritional deficiencies. A good multi-vitamin is a must.

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hi, my son hasn't been diagnosed yet because the pediatrician wants to find out if my tests come back positive first (which I think is just stupid because he has symptoms! so why should it matter if I have it or not!) anyway, if he has raisin bran or shredded wheat of any other high fiber cereal for breakfast his stools are like sand. he will be 4 in july and is finally just now almost completely potty trained, but when you have to change a diaper or clean up an accident it smells like something died in his diaper and its like trying to clean wet sand off of skin... totally impossible and goes through like a whole package of wipes at a time! anyway... just wondered if anyone else has had this experience or not. he also is very very irritable and moody and will cry about things that haven't even happened yet. one example of his fussiness is that yesterday my mom put in a dvd for him to watch, it was like 10 minutes into the movie and he starts crying and screaming about wanting to watch 2 movies... he never asked if he could watch another one when that one was over or anything... just started freaking out like if someone had told him no. he doesn't like milk on his cereal but will sometimes want it on and then cry when he sees that its there. I don't give in to him, I tell him he already changed his mind once and I'm not going to make him a new bowl of cereal... anyway... he's just really hard to live with sometimes. he doesn't seem to be able to concentrate and you have to tell him several times what to do its like he's in his own little world. he gets really easily overwhelmed cleaning his room and even cries that he doesn't know what to do if you're in there helping him.

my son is that way too! constantly begging for food! when he was a baby he would eat a whole yogurt 2 pieces of bread, 1 1/2 bananas and still be hungry! he's still that way but more and more the time, I give him something he asks for and he starts crying that he wants something else. at least he likes a variety of foods and loves almost all fruits and vegetables. I think the hardest part of a gluten free diet for him is gonna be crackers. anyway, I glad its not just me thinking that his stools are odd! he is getting skinnier every day (his weight seems to still be going up and he's tall for his age) when he has his shirt off you can see all his ribs and his spine sticks out. lately his pants have been falling off... its like his little bum is disappearing!

Wow, your kids sound exactly like my DD who I just put on a low-gluten diet. Doctor didn't want me to put her on a gluten-free diet yet. She was always so irritable and come to find out, in school she had a hard time with concentration. Her teacher was telling me that as she was teaching, DD would just turn around and stare into space like she was thinking of something else. With her appetite, she would eat all day long if we would let her. She would finish her meal and then 5 minutes later complain about being hungry again. With her too, we can count her ribs and for pants we have to buy slims or the adjustable ones or they fall off. If I'm thinking right she's only in the 5th percentile. But so is her twin sister, well she's actually under the 5th percentile. We never got her twin tested at all, but I've been thinking about it. But, then again, they have always been around the 5th percentile since birth.

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Wow, your kids sound exactly like my DD who I just put on a low-gluten diet. Doctor didn't want me to put her on a gluten-free diet yet. She was always so irritable and come to find out, in school she had a hard time with concentration. Her teacher was telling me that as she was teaching, DD would just turn around and stare into space like she was thinking of something else. With her appetite, she would eat all day long if we would let her. She would finish her meal and then 5 minutes later complain about being hungry again. With her too, we can count her ribs and for pants we have to buy slims or the adjustable ones or they fall off. If I'm thinking right she's only in the 5th percentile. But so is her twin sister, well she's actually under the 5th percentile. We never got her twin tested at all, but I've been thinking about it. But, then again, they have always been around the 5th percentile since birth.

Pardon my saying so, but it seems to me your doctor is an idiot. Get a new one, or better yet, get BOTH your children on the gluten-free diet right away, and waste no time with tests that are simply not accurate in young children anyway.

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hi, my son hasn't been diagnosed yet because the pediatrician wants to find out if my tests come back positive first (which I think is just stupid because he has symptoms! so why should it matter if I have it or not!) anyway, if he has raisin bran or shredded wheat of any other high fiber cereal for breakfast his stools are like sand.

Aleshia, I agree....the pediatrician is being stupid. You are paying the pedi to treat your son. And that has NOTHING to do with whatever tests you are undergoing yourself. Your son is exhibiting classic symptoms of Celiac Disease. The "gritty" stools....that's the manifestation of damage occuring in the small intestine. It has nothing to do with fiber and everything to do with a physiological reaction to gluten. My dd had the same thing going on. We went through the testing for celiac disease and it all came back negative. Guess what? Since going gluten-free, we NEVER saw one of those diapers again.....unless there was an accidental glutening....

he also is very very irritable and moody and will cry about things that haven't even happened yet.

We had this as well in my dd. She'd start off the day fine but as the day progressed (and she ate more gluten), it was like dealing with Dr. Jekyll and Mr. Hyde. We dreaded evenings because she was so easy to "set off". That all ended within 2 days of going gluten-free.

... anyway... he's just really hard to live with sometimes. he doesn't seem to be able to concentrate and you have to tell him several times what to do its like he's in his own little world. he gets really easily overwhelmed cleaning his room and even cries that he doesn't know what to do if you're in there helping him.

Sadly, this is all happening because he feels so miserable. I think that this issue was the hardest for me to cope with during our recovery period. Once gluten-free, my dd was smiling, laughing, concentrating and such a joy to be with...constantly. Looking back, I realize how painful life must have been for her and what a trooper she had been so far. An adult would have been far more irritable and hard to deal with if he/she were going through this. I felt so bad about not figuring out her issues before. I mean, there were signs along the way....the picky eating, the horrific diapers, the irritability, the weird behavior reactions specifically after eating cereals. I blamed it all on "picky" eating and chalked it up to her own personality (which in some ways were just predisposed to annoy me). Looking back, I realize that this 15 month old child had been trying to communicate this complex issue to me all along. I was just too self-absorbed to see it. And once I saw the differences in my child on the diet....I was wracked with guilt for not seeing it before.

My one suggestion to you is this. Trust your gut instinct when it comes to following through on these sort of issues. Push the pedi into 2nd gear. There is no reason to wait around for testing. Your ds is exhibiting symptoms. He needs to be tested. NOW. When you're done with testing, follow through with the diet. Even if everything is negative....follow up with a trial of the diet. I promise, you won't regret it.

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This all sounds exactly like my 17 month old. His blood test came up negative, but I can't deny the symptoms so I've put him on a gluten free (I hope I've eliminated it all!) diet anyway. What I want to know is, how long does it take for the grainy diapers and other symptoms to go away?

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This all sounds exactly like my 17 month old. His blood test came up negative, but I can't deny the symptoms so I've put him on a gluten free (I hope I've eliminated it all!) diet anyway. What I want to know is, how long does it take for the grainy diapers and other symptoms to go away?

Recovery times vary quite a lot from one person to the next. Diet does play a role, so as long as the diet is a healthy one, and he's not eating sugary things or other junk, I'd hope you'd start seeing improvement in maybe a week or two. Perhaps someone who's been through it will chime in.

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ok I did it! I didn't feed him any gluten today.... and guess what? HE HAS NOT WHINED ONCE ALL DAY!!! YAY! I feel so good I haven't gotten frustrated with him at all! stool is still really soft but maybe that will take care of itself over time!

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ok I did it! I didn't feed him any gluten today.... and guess what? HE HAS NOT WHINED ONCE ALL DAY!!! YAY! I feel so good I haven't gotten frustrated with him at all! stool is still really soft but maybe that will take care of itself over time!

LOL! You do realize that you have let the genie out of the lamp and now you will be hard-pressed to feed your child gluten in order to do follow up testing???

The decision to go gluten-free is yours to make and considering all you've been dealing with from the pedis, I don't blame you for trialing the diet at all. In fact, that's exactly what I ended up doing because to me, it was more important to get my dd well than to placate the doctor's need for a series of invasive and expensive tests. That being said, I would definitely call up the regular pedi and tell him that I am trialing the diet and want him/her to act as an observer to the trial. That way, when your ds goes off to school, the pedi will be willing to write up what you need to enforce the diet there as well.

I really wish that more parents could experience what you just did in regards to the profound behavior differences a gluten-free diet can make. We started down this road 3+ years ago and I can honestly say that parenting my dd has been an utter joy ever since. As inconvenient as the diet can be...I wouldn't change a thing. This change in lifestyle has brought my whole family together and it touches everyone that we associate with in some way. We are growing our own pocket of gluten-free advocates in these parts. lol!

Congratulations on a good day with your son. I'm sure it was well-earned and I hope it continues as it did for us.

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LOL! You do realize that you have let the genie out of the lamp and now you will be hard-pressed to feed your child gluten in order to do follow up testing???

The decision to go gluten-free is yours to make and considering all you've been dealing with from the pedis, I don't blame you for trialing the diet at all. In fact, that's exactly what I ended up doing because to me, it was more important to get my dd well than to placate the doctor's need for a series of invasive and expensive tests. That being said, I would definitely call up the regular pedi and tell him that I am trialing the diet and want him/her to act as an observer to the trial. That way, when your ds goes off to school, the pedi will be willing to write up what you need to enforce the diet there as well.

I really wish that more parents could experience what you just did in regards to the profound behavior differences a gluten-free diet can make. We started down this road 3+ years ago and I can honestly say that parenting my dd has been an utter joy ever since. As inconvenient as the diet can be...I wouldn't change a thing. This change in lifestyle has brought my whole family together and it touches everyone that we associate with in some way. We are growing our own pocket of gluten-free advocates in these parts. lol!

Congratulations on a good day with your son. I'm sure it was well-earned and I hope it continues as it did for us.

well, I had to drive a couple of hours to my parents house last night with the kids and didn't have time to fix them dinner so we ended up doing mcdonalds... I still wanted to be at least concious of the gluten so got them nuggets instead of cheeseburgers cause I figured the batter on the nuggets would be less gluten than the buns on the burger... I know that any amount of gluten does damage but figured since they are already so glutenized and it was the first day that it would be ok. he did get a little bit moody but not as bad as normal. then at my mom's house their cousins were having drumsticks icecreams so i let them each have one and then he fell apart pretty bad... but it was a few hours past bedtime by then so I think that played a role also. going to try to be at least consistantly gluten free as much as possible I think but I'm sure (especially while they are at my mom's house for the week) they will be getting some gluten in their diet. I should be getting the results of my own blood tests back in a few days and should be able to get the kids in for a stool test next week. (I'm sure they will still have had enough gluten by then!)

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just wanted to give an update!

5 days gluten free and he just had his first ever normal bm!!! it was totally normal but he strained as if he was constipated... I'm thinking just because he has never used those bowel muscles before... I am excited.. .first the difference in behavior and now this!

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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.        
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    • Weird Reaction
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    • Confused
      I have not. I'll talk to my doctor about it
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