Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

Not Sure What To Do About My Kids

4 posts in this topic

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! :)


Share this post

Link to post
Share on other sites

Ads by Google:

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.


Share this post

Link to post
Share on other sites

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.




Share this post

Link to post
Share on other sites

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.


Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • Today was the big day when I went to the GI and this is the first time I have felt heard about and well taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a celiac disease to me with the records, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten due to what being He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on  that talks about this subject see this link Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • I'm new to the forum, so this topic may already have been covered....please forgive me, if that's the case.  I am in the beginning stages of guiding the development of a 504 plan to file for my 6th-grade daughter who was diagnosed with Celiac Disease 2 weeks ago. The diagnosis was made with a biopsy. My first question...A 504 is what's necessary....not just the IHCP, correct or no? I have the Physician's Statement & the Medical Evaluation report from our GI specialist. What else do I need to have at the ready? The team has requested we go ahead and write the IHCP & then include it with the 504.  And my second question...What accommodations have others found relevant to include on the IHCP  & 504? I just watched a 504-Plan webinar I found on this forum & it recommends the following: -access to gluten-free food in classroom & cafeteria - excused absence from activities that use gluten-containing foods or materials -  prevent cross-contamination in school food service - use of microwave to heat personal meals -  bathroom priveleges Is there anything I need to consider adding? My daughter does prefer eating school meals rather than packing a lunch from home & I am concerned about special events, overnight field trips etc. My learning curve is steep. What am I missing? Teach me, please & thanks so much! This forum has already helped me tremendously these past few weeks.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member