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LittleMama

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About LittleMama

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  1. My younger son is being scoped at CHOP tomorrow. Sounds a lot like both my boys. If my little one is positive, we are having my older one tested. My little one tested positive for the gene and has IgA deficiency and they lost the IgG tests.... long story.
  2. I also get sick from vodka distilled from wheat. I do extremely well with Tito's vodka.
  3. They definitely diagnosed him with FPIES but he didn't have classic symptoms. He had chronic symptoms from certain foods, like constipation, but milk and oats did make him vomit, just not to shock.
  4. I definitely wonder if the FPIES was really Celiac in disguise. Very interesting. I will check out your post!
  5. Did anyone have relief from an IgA deficiency after going gluten free? Did you get sick less often? Ali
  6. Hi I'm new here. My little boy has been through the ringer. Diagnosed MSPI as a baby, then Food Protein Induced Enterocolitis Syndrome a little bit later. Supposedly outgrew all his intolerances(oats, rice, soy and milk) by 4 but still has a lot of issues. Was diagnosed failure to thrive at 2, tested for Celiac and had low IgA so test was void. Retested at 4 and was completely IgA deficient(>6), diagnosed Selective IgA deficienty. Doc ran the IgG panel which Quest LOST(yeah, I know) and also ran the HLA panel which he was positive for(one of them, I think the more probable one, sorry for my ignorance.) So doc wants to do a biopsy based on his symptoms and positive HLA. Here are his symptoms, which may or may not be related. -Previously(not currently) Failure To Thrive, but VERY small -Random tummy pain -Completely reliant on Miralax to have bowel movements, and even with it he still has trouble and gets backed up for days -Intermittent diarrhea -Intermittent EXTREME moodiness that just disappears as quickly as it came -Intermittent inability to pay attention and hyperactivity(again, not consistent at ALL) -Unexplained cerebral palsy(neurological muscle spacticity and weakness, no damage shown on MRI's but definite disability) -Selective eater -Previous multiple food intolerances -Selective IgA deficiency -Asthma, eczema, allergies My older child has a lot of symptoms as well and we will test him after we get the little one's results. I have been gluten free for a year after doing a low Fodmaps diet for extreme IBS and have never turned back. So I have no idea if I have celiac or not. I am VERY sensitive and get glutened very easily. My husband has no symptoms. In my family we have a lot of colitis, short stature and failure to thrive, IBS and food intolerance. I think I just had to get it all out, but it sounds probable, right? And if he is negative, doc wants to try gluten-free with him anyway, do you think that's a good plan? We go to CHOP and are in good hands.... Thanks! Ali