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Not Sure What To Do About My Kids

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Posted 02 June 2013 - 07:35 PM

My three year old son has had digestive issues since he started solid food at 6 months.  He was horribly constipated, sometimes for more than a week or two (before he was prescribed miralax).  He cried every time he went to the bathroom and he would push and push until a huge ball of poop would come out (size of a softball at least) from his little body.  Then he would shake and cry and recover from the pain of it.  This was a daily occurrence.  He also had iron deficiency anemia and he is missing enamel on his teeth which is causing a bunch of dental issues.  He would also throw these tantrums that had no rhyme or reason, and it seemed like he wanted to stop and couldn't.  Our doctor was very unhelpful, so we just started researching things on our own.  We started a gluten-free diet about 6 months ago.  From about 2 days in, we could see a huge difference!  His constipation went away and we were able to wean him from the daily adult dose of miralax that he had been on since he was 6 months old.  He is no longer anemic.  His tantrums stopped.  We are so thankful!  However, I know this means he can't get an accurate diagnosis.  I do not think I can put him through a gluten challenge.  He got glutened from some cross contamination recently.  He was sick for 6 days.  All he did all day was cry and then fall asleep.  He was horribly constipated for the first three days, and then had terrible diarrhea for the next three.  It was awful.  I actually think a gluten challenge would kill him!  I can't imagine him actually eating a piece of bread or something! My one year old had all the same symptoms when she first ate gluten, so she is also gluten free.  She has no symptoms at all since we started the diet.  I guess I need to hear that it is okay to have them undiagnosed.  Or alternatives to a gluten challenge.  We have switched peds a few times to try to find someone who will help us, but they all have little to no experience with it.  Please help me in any way you can.  We are happy gluten-free, but I don't want to overlook something by not having them diagnosed and monitored.  Thank you for reading this loooong post! :)

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Posted 02 June 2013 - 09:13 PM

It's not illegal or immoral (imho) to have them gluten free without diagnosis.  But you may (or may not... it depends on personal experience and where you are) have trouble with them staying gluten free through preschool (where they will be exposed to it in preschool and crumbs from the snacks the other kids eat), elementary school, and their social lives throughout.  Not to mention that it can make it harder for doctors to have the full picture of their medical story if they don't believe the child has celiac.


But that's not to say you can't do all of that without a formal diagnosis.  And that you can't find a doctor who will work with you on the matter.  (My original doctor who did the blood work on me had my blood tests come back inconclusive, but took the positive dietary results seriously, and treated it as though I were celiac without requiring anything else, because there wasn't much else she had to do in my particular case.)


It's a very personal call, and if you do decide to go without a formal diagnosis, be aware of the trouble that may come later when your child has to do their own work to stay gluten free, and be aware that there can be a "honeymoon" period, especially for teenagers, where ingesting gluten doesn't cause significant external symptoms.  But you now your kids best and can pick the best route forward for your family for now.  I would, though, make sure you can find a pediatrician who will work with you - at least humor you - on the need to be gluten free.


For what it's worth, were I to have the experience you describe above with my daughter, I would take her gluten free until at least kindergarten, if not MUCH later, without a formal diagnosis.  They are doing so much growing and developing at this time, it's not worth it to me.

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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA



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Posted 03 June 2013 - 04:21 AM

I am coming from a super-sensitive view.


You must do what is best for your child.  Protect them in every way that you can.  I would try to find someone to help you that won't make you do the challenge.



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Posted 04 June 2013 - 08:42 AM

Perhaps your doctor could give your child a diagnosis of Non-celiac Gluten Intolerance /Sensitivity (NCGI or NCGS). It is a newly recognized medical disorder and there are no blood tests or medical procedures to diagnose it - just a positive reaction to the gluten-free diet. It is a medical condition and I would guess it would be enough to get some concession from schools in a few years.  then you just need to mention, every time you see the doctors (or new doctors) that your child is NCGI but he could have celiac disease but he was unable to do a gluten challenge.... I would think that should cover your bases.


If it is celiac disease, you'll have to keep a closer eye out for other autoimmune problems in the future as the seem to run in groups (especially if untreated). Thyroid problems are especially common (1/10) amoung celiacs.  you might want to get his nutrient levels checked too as they are often low in celiacs, and can be in those with NCGI too. Low levels or potassium, calcium, iron, ferritin, D and B's are extremely common and might need megadoses of vitamins for a while.


I don't think it is bad to move forward without a diagnosis. I wouldn't want to make him sicker either. You might have a bit more hassle in everyday life - like packing lunches and snacks instead of buying it at school or having a preschool just give out goldfish crackers... he would just be missing out on junk most times anyways.


My three kids do not have a diagnosis because their blood tests were negative but they had symptoms. I wasn't going to let them keep eating gluten just because they don't have an official piece of paper declaring gluten is a problem for them. They are gluten-free and healthier even if a doctor hasn't declared they need to be gluten-free.  We have had minor hassles keeping them gluten-free, but it's not a big deal in the overall scheme of things.


Best wishes in whatever you decide to do.

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Nicole Posted Image

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