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Should We Get A Second Opinion?

shrty331

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shrty331 Newbie
shrty331
Posted

My six year old son was recently tested for celiacs. His gliadin deamidated IGA was >100. Gliadin deamidated IGG, (tTg) AB IGG, (tTg) AB IGA were negative. He was sent for an endoscopy and biopsy and the doctor said he saw mild scalloping. We were pretty sure we finally had an answer to why he was dropping growth curves, can't concentrate at school and has had constipation since he was a baby. But the gastro told me the other day the biopsy is negative so it's not celiacs and wants to keep him on miralax for the next three months and than meet with a nutritionist to go over what he is eating to see if he is eating enough calories and getting enough fiber... no mention of a possible gluten sensitivity or maybe if it could be celiacs but it was missed on the biopsy... when I tried to ask questions she really didn't answer anything... does anyone think it could still be celiacs? Or is there something else it could be that is causing the high antibodies? Should we take him to someone else???

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ravenwoodglass Mentor
ravenwoodglass
Posted

Yet another doctor who wants us half dead before they will diagnose.:angry: I would get a second opinion only because he would need precautions taken at school. The blood test he had that was a strong positive is the best celiac test we have to date. The scalloping is a sign of celiac and biopsies can miss damaged villi especially in children. After all testing do get him strictly gluten free. Sometimes a ped will give the diagnosis once they see how symptoms resolve on the diet, growth becomes normal and the child gets sick when they accidentaly get gluten. Now that your little one has shown positive on testing do be sure to get the rest of the family tested if you haven't already.

shrty331 Newbie
shrty331
Posted
  • Author

We have had the other two tested by the pediatrician. The youngest was fine. My daughter (8 years old) had "positive A" listed for endomysial IGA. And the AB titer was 1:5. The other tests were all normal. She goes to the same gastro as my son on Thursday. I am guessing they will order an endoscopy/biopsy for her as well...

ravenwoodglass Mentor
ravenwoodglass
Posted

Make sure Mom and Dad get tested also. You might want to give the whole house a gluten free trial after all testing is done. With little ones that is often the easiest way to go. Prevents one waving Oreos in the others faces and dancing. :D

shrty331 Newbie
shrty331
Posted
  • Author

The husband and I have both been tested and both came back negative... we went to a gastro and she is sending us both for endoscopies in june. I have been eating low carb, so almost no gluten for over a year, so I wasn't surprised that mine was negative. Been eating as much low carb gluten as I can for the past month and will continue until the biopsy. Pretty sure I have it as I have hashis, hypoglycemia, UARS, fatigue... I will be going back to my low carb diet either way, but am hoping for a definite dx for the kids.

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