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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Pediatric Use Of Miralax

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Hi - Just thought I'd point out that the NY Times and other papers have had some articles recently about the pediatric use of Miralax. When my daughter was first diagnosed with celiac she had to use large quantities for cleanouts. We had some weird side effects and switched to other things.

http://www.nytimes.com/2012/05/26/us/miralax-a-popular-cure-but-never-approved-for-children.html?pagewanted=all

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I saw this, too. We are using LOTS of miralax. Can I ask you if your daughter had a lot of constipation with Celiac? My daughter gets constipated to the point of impaction and having diarrhea and it is so frustrating!

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I saw this, too. We are using LOTS of miralax. Can I ask you if your daughter had a lot of constipation with Celiac? My daughter gets constipated to the point of impaction and having diarrhea and it is so frustrating!

My DD had impactions with a stretched colon and we used this for over a year and occasionally had to do Pepto Bismal on weekends for extra clean outs. Going gluten-free changed it pretty quickly. We stopped using it almost immediately. With no problems except the normal CC issue's

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My son, even on an elemental diet thru a g-tube, has to have 3 doses a DAY to keep things moving freely. His colon is MASSIVELY enlarged and we really have NO idea why or HOW it got as large as it did. We are on the path of "do whatever it takes to save the colon" right now.

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My DD had impactions with a stretched colon and we used this for over a year and occasionally had to do Pepto Bismal on weekends for extra clean outs. Going gluten-free changed it pretty quickly. We stopped using it almost immediately. With no problems except the normal CC issue's

Oh wow -- that's amazing! We are having the same thing - impactions with diarrhea around -- we are on miralax AND 2 senna laxatives a day -- and now we're on sulfasalazine, too, for GI inflammation. And even still she's impacted again within 2 weeks of a clean out -- so we have to do 6 capfuls of miralax for 2 days in a row in order to clean her out again. SO excited to hear that you were able to stop using it almost immediately!! Did you get a Celiac diagnosis or did you just decide to give it a try? I am VERY curious to hear about how this all came together for you! I am getting motivated to actually try this!

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My son, even on an elemental diet thru a g-tube, has to have 3 doses a DAY to keep things moving freely. His colon is MASSIVELY enlarged and we really have NO idea why or HOW it got as large as it did. We are on the path of "do whatever it takes to save the colon" right now.

Oh gosh, I am so sorry to hear that! I sure hope you can find an answer. Is it Celiac? Crohn's? Both? My DD has inflammation of the ileum and left colon but apparently it doesn't look like Crohn's?

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Oh gosh, I am so sorry to hear that! I sure hope you can find an answer. Is it Celiac? Crohn's? Both? My DD has inflammation of the ileum and left colon but apparently it doesn't look like Crohn's?

Celiac, Megacolon most likely due to an IBD but thanks to the size and shape the colon is in we can't get the proper biopsies taken. He is treated as an IBS case though. We have Dysphagia, GERD, Delayed Gastric Emptying, Celiac, and Megacolon not to mention chronic constipation. So his entire GI system just has awesome :insert sarcasm: motility.

What is really mind boggling is that he had his first colonoscopy when he was just under 3yrs of age, which showed a "normal" colon. His last one was done approx 2 months before his 8th birthday and that is when we found out about his "colon the size of Alaska".

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So those of you who have kids with celiac who had constipation, how long after going gluten free did it take for them to be normal? And did you just stop using miralax? At what point? My son was blood test positive, but biopsy negative. We took him off of gluten immediately after the biopsy, 4 weeks ago. In those 4 weeks he has gained 2 lbs and one inch. I am still giving him the miralax daily, but I am really hoping that his constipation will resolve being gluten free.

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I saw this, too. We are using LOTS of miralax. Can I ask you if your daughter had a lot of constipation with Celiac? My daughter gets constipated to the point of impaction and having diarrhea and it is so frustrating!

My daughter had stool retention that was diagnosed via xray. (Basically that means her colon was filled with old hard poop) we worked with the pediatric GI dept. at childrens hospital and it took around a year to resolve. We had multiple visits and xrays and cleanouts. It's hard to say when it started because she was diagnosed with celiac at the end of 4th grade (now in 7th). That year her teacher mentioned at our parent teacher conference in Feb. that he was annoyed because she seemed to need the toilet too often and he was restricting her bathroom use. This was before we figured out about the celiac around April, so that probably made it worse. She is a super well behaved kid and if her teacher wasn't letting her use the toilet as often as she needed...

In fifth grade a few months into the gluten-free diet, she had severe stomach pains and GI took xrays that showed dd was full of stool. I don't know if ours was especially bad but it did require multiple clean outs with massive amounts of miralax and other icky stuff. After the last one my dd complained of having trouble concentrating and feeling weird after something like a whole bottle of the stuff. Luckily that one did the trick otherwise the next step would have been to have her do a cleanout in the hospital that involves putting a tube down her nose through her stomach and literally flushing with water. yuck. I had no idea that this could be such a serious problem and always worry when I see things that make it sound like the kid is being bad by holding it in on purpose. I think it takes the colon a long time to heal once it's been stretched and I recommend working with a pediatric GI specialist. The digestive system is fairly complex and I really just don't believe that kids especially little ones are misbehaving by holding in poop deliberately -- I think there is an underlying medical issue that needs to be addressed.

We never used miralax again after daughter complained of other side effects.

These are two more articles:

http://parenting.blogs.nytimes.com/2012/05/26/parents-share-advice-for-the-constipated-child/

http://www.boston.com/lifestyle/health/childinmind/2012/05/the_poop_wars_why_miralax_is_j.html

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My daughter had stool retention that was diagnosed via xray. (Basically that means her colon was filled with old hard poop) we worked with the pediatric GI dept. at childrens hospital and it took around a year to resolve. We had multiple visits and xrays and cleanouts. It's hard to say when it started because she was diagnosed with celiac at the end of 4th grade (now in 7th). That year her teacher mentioned at our parent teacher conference in Feb. that he was annoyed because she seemed to need the toilet too often and he was restricting her bathroom use. This was before we figured out about the celiac around April, so that probably made it worse. She is a super well behaved kid and if her teacher wasn't letting her use the toilet as often as she needed...

In fifth grade a few months into the gluten-free diet, she had severe stomach pains and GI took xrays that showed dd was full of stool. I don't know if ours was especially bad but it did require multiple clean outs with massive amounts of miralax and other icky stuff. After the last one my dd complained of having trouble concentrating and feeling weird after something like a whole bottle of the stuff. Luckily that one did the trick otherwise the next step would have been to have her do a cleanout in the hospital that involves putting a tube down her nose through her stomach and literally flushing with water. yuck. I had no idea that this could be such a serious problem and always worry when I see things that make it sound like the kid is being bad by holding it in on purpose. I think it takes the colon a long time to heal once it's been stretched and I recommend working with a pediatric GI specialist. The digestive system is fairly complex and I really just don't believe that kids especially little ones are misbehaving by holding in poop deliberately -- I think there is an underlying medical issue that needs to be addressed.

We never used miralax again after daughter complained of other side effects.

Oh wow -- good to know. We are working with a ped GI but we are still having issues. In fact, I am pretty sure we are going to have to get another x-ray today. Luckily we haven't let the problem go for long without a cleanout, but it does take 6 capfuls of miralax a day for 2 days to get her cleaned out and we end up doing this every 2 weeks. This is with a maintenance dose of miralax AND 2 senna laxatives a day. And now she is also on sulfasalazine for the inflammation they found on her recent scope. And even with all of that she is backed up again. So we are taking out gluten today and praying it'll make a difference. I am so frustrated!!

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So those of you who have kids with celiac who had constipation, how long after going gluten free did it take for them to be normal? And did you just stop using miralax? At what point? My son was blood test positive, but biopsy negative. We took him off of gluten immediately after the biopsy, 4 weeks ago. In those 4 weeks he has gained 2 lbs and one inch. I am still giving him the miralax daily, but I am really hoping that his constipation will resolve being gluten free.

I am wondering the same. How much miralax is he taking? And has he had any constipation since going gluten-free? Could you try going down on the dose for a few days and see what happens?

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OMG! I am so glad I found this thread! My son just got his paperwork for celiac testing, but he is full of poop and the doc gave him miralax and insisted there was no way to overdose on it. Also said to just continue the dosing. Agh....

Any safer ways to do a cleanout?

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I am wondering the same. How much miralax is he taking? And has he had any constipation since going gluten-free? Could you try going down on the dose for a few days and see what happens?

He is currently just taking 1/3 capful daily. I haven't tried weaning him off of it or stopping it yet. I am leery of stopping it because when he has missed more than a dose or two in the past, he starts vomiting, and then he finally poops and all is well. I am thinking of maybe weaning down a bit and seeing how he does.

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OMG! I am so glad I found this thread! My son just got his paperwork for celiac testing, but he is full of poop and the doc gave him miralax and insisted there was no way to overdose on it. Also said to just continue the dosing. Agh....

Any safer ways to do a cleanout?

Nope -- it is the best way to do a clean out -- we've done it several times, and it looks like we're impacted again and will be facing another clean out. But we've been on miralax for close to 2 years and now I want to get to the bottom of the problem so that we can get this all straightened out, and get off of it! It is so frustrating!

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OMG! I am so glad I found this thread! My son just got his paperwork for celiac testing, but he is full of poop and the doc gave him miralax and insisted there was no way to overdose on it. Also said to just continue the dosing. Agh....

Any safer ways to do a cleanout?

Miralax is the safest and least invasive. We have had to do hospital clean outs, which are NO fun. We did one cap full of Miralax in 8ounces of CLEAR liquid with NO solid food during waking hours until we saw "Mt Dew" colored stool. No more than 48hrs though and for my son, that was never enough.

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To the poster with kiddo who had pos blood test but neg biopsy- did your GI doc suggest going gluten-free or you decided to take that route due to symptoms? I am ticked that my GI is telling us our 7 year old does not have celiac, even though I have it and she has elevated tTG testing at 78.20. I am getting an opinion of another pediatric GI that has a speciality in kids celiac. Hoping for a full panel done through him, and better info. This other guy is trying to tell me she is a false positive!

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To the poster with kiddo who had pos blood test but neg biopsy- did your GI doc suggest going gluten-free or you decided to take that route due to symptoms? I am ticked that my GI is telling us our 7 year old does not have celiac, even though I have it and she has elevated tTG testing at 78.20. I am getting an opinion of another pediatric GI that has a speciality in kids celiac. Hoping for a full panel done through him, and better info. This other guy is trying to tell me she is a false positive!

No our GI did not tell us to go gluten free. She told us that he was fine and needed no special diet. I decided to try him gluten free on my own. If it makes a difference, his tTG was only a "weak positive". He did NOT get the full celiac panel done. Just the tTg and IGA. I tried to fight our ped on that one and he felt it was unnecessary to run the additional tests. I didn't push it because we had the biopsy scheduled and I figured that was more important. I am beyond frustrated by it now that his biopsy is negative and he is showing so much improvement being gluten free!

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My son was on very large doses of this and it never helped. We have change to a liquid med but it helps very little. We have been on the gluten-free diet since Feb 2012 and still have constipation issues.

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My son was on very large doses of this and it never helped. We have change to a liquid med but it helps very little. We have been on the gluten-free diet since Feb 2012 and still have constipation issues.

Have they done other GI testing? Have they thought about gut rest meaning an elemental formula whether by mouth or by tube? My son has a dysfunctional GI system and the elemental diet is the ONLY thing helping him. If they have not done a colonoscopy, that is where I would start.

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What a great article. My daughter is almost 2.5 and is on a full capful of Miralax daily for the last 2 months when she had to be hospitalized due to impaction. She has not been diagnosed with Celiacs yet but her last few scopes have shown indicators. Her Celiac panel was drawn on Wednesday. Regardless of the results, we will be going gluten-free and I'm really hoping that it will help wih her stool issues and also with gaining weight (she has been diagnosed as Failure to Thrive).

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