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13 Month Old How To Search Out Gastro Doc?


beckyboo40

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beckyboo40 Newbie

My 13 month old son has had belly issues since birth.  He was on hypoallergenic formula (allimentum) and did fine until solids intorduced.  He was cranky and spent may sleep deprived night with restless ness and belly cramping.  I have kept him pretty much gluten free but I am not keeping a gluten free house.  I finally got the ped to agree to refer to gastro after trials of wheat and so on.... Well after one horrible night after wheat cereal (he was much improved the next day) I feel that is enough.  We see the ped in may and then will be referred to a gastro.  After all the horror stories how can I be sure that the gastro will take us seriously?  My son in not small and not underweight. ( 50% height and 50 to 75 % for weight.)  My husband is very anti- celiac or non gluten sensitivity so I do want some one else to say Hey its true!  Also how long must a person be "glutened" for testing?  what should I ask for testing wise and so on?  He is also somwhat lactose intolerant and definately soy intolerant.  My 9 year old daughter is allergic to soy milk(night in er)  Should I wait to test untill he is older and keep him gluten free untill then?  I hate to make him suffer for a test that may or may not be accurate. 

Thanks,

Becky


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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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