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Pushing for screening- need 2nd opinion?

MamaMae

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MamaMae Newbie
MamaMae
Posted

Hi, I'm new here. I'll TRY to keep this brief. My daughter is 7 and had FPIES (food protein induced enterocolitis syndrome) from birth until 3.5yo. Since she outgrew it, we've had zero issues with food.

This last year, though, she's had so many classic celiac symptoms. Bloating, extreme tummy pain, extreme nausea, dairy sensitive, tingling extremities, mood swings, constipation, reflux. I did an elimination diet for 3 weeks and it's for sure gluten causing these symptoms. 

She had an appt with a GI on Saturday. He said he thinks it's FPIES related (I've never heard of a re-occurrence once outgrown...) and that she's basically FPIES to wheat and her constipation is causing the majority of her stomach problems. He said he doesn't believe it's celiac related because she doesn't have diarrhea and had a clean scope at 3 MONTHS OLD. Of course that scope was clean. she was an infant not consuming gluten and it was 7 years ago. 

So I guess my question is, do I push for the blood panel or do I try to get a second opinion? Any advice would be appreciated. I thought that the food as poison nightmare was behind us :( 

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Ennis-TX Grand Master
Ennis-TX
Posted

Blood panel will require a gluten challenge of eating gluten every day for 12 weeks. Read up here
Open Original Shared Link
I would suggest the further testing...I used to only have the constipation and it was not til this last year I started having Diarrhea issues with gluten poisonings bowl movement wise. The constipation and extremeites tingling is in part from magnesium deficiency caused by damaged intestines if celiac. Supplementing with Natural Vitlaity calm should help. Start her off on 1/4tsp (1-2g) a day and ease it up at such a young age I would not beyond 1tsp. But if she gets loose stools back it back down dosing to tolerance. A liquid spectrum B-vitamin and some vitamin D drops should help with other nerve issues in the mean time and make it more comfortable. I use liquid health products to avoid pills myself, Just pour a tsp of each the Stress&Energy formula and the neurological support fomula in a drink and add in some d3 drop. At such a low age I THINK these might help consult with your local dietician about using these to offset celiac related nutrient absorption issues.

MamaMae Newbie
MamaMae
Posted
  • Author

Thank you so much for your input <3

cyclinglady Grand Master
cyclinglady
Posted

You can develop celiac disease at any time.  An old negative endoscopy does not rule out celiac disease.  

I would get a second opinion.  I would also have a complete celiac blood panel run.  

frieze Community Regular
frieze
Posted

another one of THOSE docs.......hmmm  ^%#$**^$@

squirmingitch Veteran
squirmingitch
Posted

And get a new doc; one that has experience in celiac disease b/c the present one sure doesn't. We call IBS the I Be Stumped diagnosis. IBS is a symptom NOT a diagnosis. In other words, it's a big fat cop out.

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      26F!
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