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MommaBecker added a topic in Super Sensitive Celiacs & Gluten SensitiveSuper Sensitive InfantMy son is 11 months old and is super sensitive His celiac was noticed before he even tried gluten in person. He can detect miniscule amounts in my breast milk which has been a struggle. He also has DH which is a great indicator when he has had a bad food reaction. My question to the super sensitive people is do you have any problems with other grains? My son can't do any corn or soy derivatives without having DH flare ups. He also can't have millet, sorghum, rice, amaranth, coffee or legumes.
Any suggestions? Is this something he will get better about? I know that we can clear his skin totally when he is gluten, corn, soy, and grain free completely. He has no allergies and has been tested for every kind.
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- 1,376 views
MommaBecker added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsInfant BiopsyMy son is 11 months old and will be finally having his scope performed on the 30th. I read the thread regarding questions to ask and I wanted to follow up with one of my own.
My son is EXTREMELY sensitive to gluten, corn, and all grains. He also has DH which flares with even iodized salt. How long before the test should I be feeding him gluten (we have been grain free for 6 months) and will the test show if he has leaky gut? We have been unable to do the leaky gut blood/urine test because it consist of drinking a corn syrup which he cannot tolerate. We are worried that if we don't feed him gluten then the test will show a false negative. If we do feed him gluten, it is going to be awful but the trade off will be finally having the diagnosis so doctors stop ignoring his health problems.
Any thoughts on what to feed, for how long and how far in advance?
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MommaBecker added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsDiagnosing An InfantMy son was born in June of last year and he seemed normal at birth. After the second month we had a terrible bout of thrush that was treated with antibiotics and antifungals for both of us. After the treatment my son started having stomach distension, horrible foul smelling mucus stools and diarrhea screaming fits, heartburn and red spots on his skin. This continued to worsen until he was awake around the clock with screaming, having to be held upright, swelling so large his stomach wouldn't fit in pants, and constant mucousy stools that were so foul my husband and I threw up once changing him. His skin went from small red spots to larger boil like lesions that he constantly itched at. He also was getting covered in cradle cap. We took him to the doctor almost every week and they said it was colic/reflux/or possible FPIES. We continued an elimination diet (breastfeeding) until we removed all dairy, soy and soy derivatives and gluten. The gluten removal made a HUGE change. After 6 weeks he stopped having mucosy stool and stomach swelling was gone 1 week after gluten removal.
His skin continued to be a huge problem and almost all of his upper body was covered in large boil like itchy lesions. He would get them on his neck, arms, genetails, face, arm joints, leg joints and buttocks. At this point we saw a Dermatologist who diagnosed him with DH. She was certain that was the problem. (As we had suspected). Since we had been gluten free, she suggested we go Corn free. That made a HUGE difference. Even the small amount of corn in mustard would make him sick. After that we still had some outbreaks but found some people on this site removing iodized salt to stop DH. We tried that and within 48 hours his skin was almost completely clear.
So after this long introduction, the question is what steps to do to be officially diagnosed with Celiac? Our regular doc can't do it because we removed gluten before the blood test so he needs a positive test to Dx. We were sent to UNC's Children's Hospital and the head of PedsGI said that "babies can't get Celiac because there is no way to have gluten in breastmilk". He also refuses to accept an infant with DH even though we have 2 other derms confirming it and a positive biopsy. We have been sent to 5 allergists to look for "allergies". Each doc there says it is Celiac and sends us back. How do I get this officially diagnosed and what kind of follow up care should I be asking for?
- 6 replies
- 6,551 views