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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.

Bleeding Toddler And A 2 Month Wait To See Gi?
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Is this the norm when you have internal bleeding? Am I thinking it's more serious and it's really not? My 2 year old son has exhibited signs of intestinal bleeding with black stool and with fresh blood mixed in with his stool 4 times in 2 weeks and nobody but his unknowledgable Ped. will see him for this sooner than 2 months? How can I get them to be more proactive with him? I worry, he's only 2!

Thanks for letting me freak out a bit, nobody else understands.

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This same thing happened with my daughter and my son. I noticed blood in my daughters diapers at about 5 months and I think around 6 weeks for my son.

We had the same problems with the doctors - exactly the same. My ped. thought it was a dairy and/or soy problem, but I went off of those for 8 months with no improvement (I was nursing her at the time).

It's a long story, but after researching their symptoms my self for a long time I came across the symptoms for Celiac and both of my children had almost all of the symptoms and I had at least 20 myself.

We finally saw the Gi for my daughter and I told him every thing and my thoughts about them (and myself) having Celiac. He disregarded the celiac thing and thought that my daughter was just constipated and gave us a prescription laxative. My daughter and son, would have D, but only a couple of times a week some times only once in a six day period. My natural doctor said she thought that it was constipation that caused the bleeding, but that after not being able to "go" for too long the body would cause her to have D. Once I talked with the natural doc. about my concerns of Celiac (I was just getting diagnosed with it at this time), she thought that the celiac was the cause of the constipation.

Shure enough after taking them off of gluten the blood went away and they started sleeping better and eating better (my daughter had been eating less and less as time went on until she was only eating a couple of spoonfuls of apple sauce a day).

I don't know if any of this was too confusing, but if you think it might be gluten you could just take him off of it - I know that he wouldn't get officially diagnosed, but it might not be worth the worry while you wait for those stinky :P doctors to see him.

If you have any questions, I am happy to answer them the best that I can.

I hope things work out and that you get to feel less stressed soon. It's the worst to be going through this with a child.

~Sarah

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2 MONTHS!!!!!!!! I would be freaking out also. I would call the office and ask to be put on the cancellation list. That way if someone calls at 9 am and says they can't make their appointment you can slide in. This of course only will work if your GI is close enough. If you should find any fresh blood in his diaper, as in not with a bowel movement or if the amount you see in a movement increase get the little guy and his diaper into an ER. If he should become listless, pale, lips get a bluish cast, he appears to be in pain or his tummy feels hard and/or he starts to run a high fever that would prompt me to visit the ER also.

I am sorry this is taking so long for the doctors to address. If he is acting fine and not in pain I would try not to worry too much.

I also agree with the previous poster. If you take him off gluten and he improves then you have your answer. The only problem would be if you decided later that you really need an 'official' diagnosis as that would require you to regluten the little guy.

You also have the option of going with Enterolab to see if he is making antibodies and if so to what. They can test for gluten, soy, yeast and casien. Most doctors don't accept the tests and they do not diagnose celiac but it can be helpful.

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I'm sorry it took so long, Drs can be so frustrating! I wish they'd do more listening and less verbal diarrhea of their own thoughts KWIM?

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Yes! 2 Months! My husband was furious! So much so, he went outside and cleaned the siding LOL I am watching his diaper but I am thinking it may simply have been the barley I trialed a bit over 2 weeks ago now. The poop was a definite positive in my book the day afterwards, the next was black and then next 3 were with fresh red blood and todays seems normal. Doesn't gluten stay in the system about 2 weeks? His ped. said it wouldn't have been the cause of his red bleeding a week and a half later, what do you think? He did order a blood test for anemia and was told it was fine.

2 MONTHS!!!!!!!! I would be freaking out also. I would call the office and ask to be put on the cancellation list. That way if someone calls at 9 am and says they can't make their appointment you can slide in. This of course only will work if your GI is close enough. If you should find any fresh blood in his diaper, as in not with a bowel movement or if the amount you see in a movement increase get the little guy and his diaper into an ER. If he should become listless, pale, lips get a bluish cast, he appears to be in pain or his tummy feels hard and/or he starts to run a high fever that would prompt me to visit the ER also.

I am sorry this is taking so long for the doctors to address. If he is acting fine and not in pain I would try not to worry too much.

I also agree with the previous poster. If you take him off gluten and he improves then you have your answer. The only problem would be if you decided later that you really need an 'official' diagnosis as that would require you to regluten the little guy.

You also have the option of going with Enterolab to see if he is making antibodies and if so to what. They can test for gluten, soy, yeast and casien. Most doctors don't accept the tests and they do not diagnose celiac but it can be helpful.

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Yes! 2 Months! My husband was furious! So much so, he went outside and cleaned the siding LOL I am watching his diaper but I am thinking it may simply have been the barley I trialed a bit over 2 weeks ago now. The poop was a definite positive in my book the day afterwards, the next was black and then next 3 were with fresh red blood and todays seems normal. Doesn't gluten stay in the system about 2 weeks? His ped. said it wouldn't have been the cause of his red bleeding a week and a half later, what do you think? He did order a blood test for anemia and was told it was fine.

All I can refer to is my own experience but after I went gluten free I started to have bleeding for about 3 days after my GI reaction hits if I get a good amount of gluten. It usually takes a couple of days for the GI reaction to hit me and others also can have a delay in those symptoms. I also will pee pink for a week or so. Oddly enough before I went gluten free I never had any bleeding issues. I, of course, can't say that is what happened with your little guy.

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All I can refer to is my own experience but after I went gluten free I started to have bleeding for about 3 days after my GI reaction hits if I get a good amount of gluten. It usually takes a couple of days for the GI reaction to hit me and others also can have a delay in those symptoms. I also will pee pink for a week or so. Oddly enough before I went gluten free I never had any bleeding issues. I, of course, can't say that is what happened with your little guy.

This is what seems to be happening here. My son would always have his reactions 18-24 hours later; this was his first time bleeding though. Gosh, the more I ask questions about celiacs and my son, the more it seems it's a sure fit diagnosis for him. I cannot wait to figure SOMETHING out about this!

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This is what seems to be happening here. My son would always have his reactions 18-24 hours later; this was his first time bleeding though. Gosh, the more I ask questions about celiacs and my son, the more it seems it's a sure fit diagnosis for him. I cannot wait to figure SOMETHING out about this!

Have you considered having him tested with Enterolab? I know they don't diagnose celiac but they can tell you if he is making antibodies and you could take him off gluten for up to year and the antibodies can still be found.

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Have you considered having him tested with Enterolab? I know they don't diagnose celiac but they can tell you if he is making antibodies and you could take him off gluten for up to year and the antibodies can still be found.

Isn't this really expensive? We cannot afford to breath right now and are anticipating a drive (fuel costs)to see a good doctor for him and that alone is going to kill us. I would LOVE to get that to get somewhere!

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Isn't this really expensive? We cannot afford to breath right now and are anticipating a drive (fuel costs)to see a good doctor for him and that alone is going to kill us. I would LOVE to get that to get somewhere!

Check with their website. You can order just the stool panel for gluten, I think. I had a full workup but without the gluten test, I had been diagnosed for 5 years at that point but the tests including gene panels were around $300. Just the stool test would be a lot less. I would also consider calling them and explaining your financial situation and the little guys issues and asking what they would advise you to do. I don't know if it is even possible but perhaps they might be able to discount for you. You don't know without asking.

Also if he is gluten free there isn't going to be a lot that the specialist can do celiac wise without a gluten challenge. Do keep that in mind as if his issues are gluten related nothing will show up if he is gluten free or gluten light. I'm sorry I don't remember but have you had your regular ped do a blood test while he was still on gluten? If he has been gluten free and a gluten challenge like you did with the barley, is positive ie. he reacts, IMHO you already have your answer.

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Check with their website. You can order just the stool panel for gluten, I think. I had a full workup but without the gluten test, I had been diagnosed for 5 years at that point but the tests including gene panels were around $300. Just the stool test would be a lot less. I would also consider calling them and explaining your financial situation and the little guys issues and asking what they would advise you to do. I don't know if it is even possible but perhaps they might be able to discount for you. You don't know without asking.

But does it diagnose celiac or the possibility of celiac? I don't quite understand this :) I'm sorry for so many questions.

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Is this the norm when you have internal bleeding? Am I thinking it's more serious and it's really not? My 2 year old son has exhibited signs of intestinal bleeding with black stool and with fresh blood mixed in with his stool 4 times in 2 weeks and nobody but his unknowledgable Ped. will see him for this sooner than 2 months? How can I get them to be more proactive with him? I worry, he's only 2!

Thanks for letting me freak out a bit, nobody else understands.

I would try to give K1. If your kid is vitamin K deficient, which happens to celiacs and infants, you will see some improvements with internal bleeding within 3-5 days. I don't know about the children dosage though - I was taking 1000 mcg/day and found improvements with bruising and rectal bleeding in 3-4 days. Vitamins K1 shouldn't hurt, as I know. B)

You can ask your doctor's advice, just to be on the safe side.

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Yes! 2 Months! My husband was furious! So much so, he went outside and cleaned the siding LOL I am watching his diaper but I am thinking it may simply have been the barley I trialed a bit over 2 weeks ago now. The poop was a definite positive in my book the day afterwards, the next was black and then next 3 were with fresh red blood and todays seems normal. Doesn't gluten stay in the system about 2 weeks? His ped. said it wouldn't have been the cause of his red bleeding a week and a half later, what do you think? He did order a blood test for anemia and was told it was fine.

When I read this just now it jogged my memory. A couple of months ago I noticed my son was eating something and I hadn't given him anything to eat. I went to see what it was and... AHHH! GLUTEN! He had somehow found a multi grain pretzel (a kind that we had eaten before going gluten free). I have no idea what happened, but we think that although we cleaned out and vacuumed our couches after taking gluten out of our lives that it had gotten stuck up in the couch some where and some how had gotten dislodged.

Anyway, he found it and had had at least a bite before I got it away from him.

Within a couple of days (I don't remember exactly the number... 1-3 maybe?) He again had blood in his stool, and it lasted for a couple of weeks. - Sorry I can't remember the time lines perfectly - my brain isn't working right still. But, it sound just like what you have had happen with your son. I really think that could be what's going on with him too.

Does you son have any other symptoms? Is he acting like he doesn't feel well?

I really think if he hadn't been on gluten and you just tried the barley, you probably won't get anywhere with the GI - at least if his symptoms clear up.

Then again, hopefully you get to see one that is a lot better than the one we saw - he just treated me like I was making everything up and didn't think there was a possibility of my kids having Celiac.

I am so sorry you are going through this! It really sucks!!!

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Don't you just LOVE when your little ones find treasures in the couch? LOL

His symptoms are all intestinal and he doesn't ever seem like he's in pain although the times he's eaten something he shouldn't have, he wakes up several times during the night and cries; I don't know if that is related or it's his age? When he has a poop after having gluten it's normally yellow, "fluffy", sometimes looks like it's filled with sand, sometimes gray like modeling clay, smells somewhere between vomit and mothballs, undigested foods, sometimes floating, burns his skin, and always an enormous amount! When I trialed the barley the only other symptom he's had was dark, sunken eyes along with the nasty poop followed by the blood in his poop.

When I read this just now it jogged my memory. A couple of months ago I noticed my son was eating something and I hadn't given him anything to eat. I went to see what it was and... AHHH! GLUTEN! He had somehow found a multi grain pretzel (a kind that we had eaten before going gluten free). I have no idea what happened, but we think that although we cleaned out and vacuumed our couches after taking gluten out of our lives that it had gotten stuck up in the couch some where and some how had gotten dislodged.

Anyway, he found it and had had at least a bite before I got it away from him.

Within a couple of days (I don't remember exactly the number... 1-3 maybe?) He again had blood in his stool, and it lasted for a couple of weeks. - Sorry I can't remember the time lines perfectly - my brain isn't working right still. But, it sound just like what you have had happen with your son. I really think that could be what's going on with him too.

Does you son have any other symptoms? Is he acting like he doesn't feel well?

I really think if he hadn't been on gluten and you just tried the barley, you probably won't get anywhere with the GI - at least if his symptoms clear up.

Then again, hopefully you get to see one that is a lot better than the one we saw - he just treated me like I was making everything up and didn't think there was a possibility of my kids having Celiac.

I am so sorry you are going through this! It really sucks!!!

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But does it diagnose celiac or the possibility of celiac? I don't quite understand this :) I'm sorry for so many questions.

Enterolab does not technically diagnose celiac. But they can tell you if he is producing antibodies to gluten. We don't produce antibodies to stuff our body want to have in it.

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Don't you just LOVE when your little ones find treasures in the couch? LOL

His symptoms are all intestinal and he doesn't ever seem like he's in pain although the times he's eaten something he shouldn't have, he wakes up several times during the night and cries; I don't know if that is related or it's his age? When he has a poop after having gluten it's normally yellow, "fluffy", sometimes looks like it's filled with sand, sometimes gray like modeling clay, smells somewhere between vomit and mothballs, undigested foods, sometimes floating, burns his skin, and always an enormous amount! When I trialed the barley the only other symptom he's had was dark, sunken eyes along with the nasty poop followed by the blood in his poop.

My daughter always gets the dark sunken eyes when she has gluten.

And I just wanted to mention that my kids don't always have the exact same reaction when they get gluten. Sometimes it's a little different than the last. I don't know if it has to do with how much or if the body just responds differently the more we get exposed. Plus, it always seems hard to figure stuff out with kids. :)

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My daughter always gets the dark sunken eyes when she has gluten.

And I just wanted to mention that my kids don't always have the exact same reaction when they get gluten. Sometimes it's a little different than the last. I don't know if it has to do with how much or if the body just responds differently the more we get exposed. Plus, it always seems hard to figure stuff out with kids. :)

Boy,this sounds like what happens when my corn allergic son (older than the toddler in question) eats corn. He's had many small reactions, one rather drastic and one anaphylactic. Weird!

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In the metro Detroit area, it usually is a 3 month wait for an appointment with a ped. gastro. (The quickest we have been bumped up has been 3 weeks and my daughter has been a patient since she was about 10 months old.)

That was still about the wait time after my daughter was released from the hospital after vomitting fresh blood.

(She was later diagnosed with eosinophilic esophagitus, after her probable celiac diagnoses about 4 years gluten free.)

Call the office and get on the cancellation list. Like I said , the average appointment is made 3 months in advance, people have to cancell some appointments. Ask questions about any tests that can be done before the appointment.

I would be looking up information on the doctor too.

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FYI, vitamin K:

daily

0-6 mo 2.0 mcg

6-12 mo 2.5 mcg

1-3 yrs 30 mcg

(adults: 90-120 mcg)

Bleeding gums is a major sign (do you brush teeth?) too. Toxicity can occur with synthetic doses and leads to liver failure. It is a fat-soluble vitamin, so toxicity is potentially possible at much lower doses than with water soluble vitamins.

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