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About wvasweetness

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  1. Yes, this is our greatest fear.... that he will be severely sick for a month, have the test done and it comes back negative. They are only willing to scope him after a MINIMUM of 4 weeks on a gluten diet. We say the same - the end result is the same: if it's negative, he won't have gluten... if it's positive, he won't have gluten. Yes, we are just now joining the frustration with (lack of) testing options... I know, it doesn't at all seem right to be able to say "well, I know that forcing your toddler to eat gluten will make them sick and potentially hospitalize him, but go ahead and do it and we will do a test that may or may not be accurate."
  2. Thanks, everyone. We already drive more than 2 hours to a "good" specialist, which is why we even considered this in the first place. But even being new to the whole celiac world, my husband and I knew that this couldn't be the only option for diagnosis.
  3. I didn't even know this was possible - to be too young to produce the antibodies necessary to get a positive diagnosis through antibodies.
  4. We have discussed potential testing for our 16 month old son for several months. However, his very severe symptoms when he is exposed - even CC exposure - are preventing us from moving forward. Our pediatric gastro recommends he be on a diet with gluten for a minimum of 4 weeks prior to testing. Both she and our pediatrician agree that exposure for 4 weeks would most likely hospitalize him because of dehydration and other symptoms. Even "minor" exposure leaves him covered in eczema, writhing in pain (crying for hours at a time) with severe reflux and diarrhea for at least 48 hours, often longer. He also exhibits neurological issues, like walking directly into walls and hitting his head against the floor. Even though we are somewhat medically conservative, we recognize the need for an official diagnosis. What we ARE questioning is the best time to move forward with the testing. Doing it now would mean that our son would retain few (if any) memories of the testing or the sickness he will certainly endure prior to testing. However, at this age he can't voice symptoms/pains to us. Any input on this? Has anyone dealt with severe symptoms during the 4-6 week period of gluten intake prior to testing and/or potential hospitalization because of it?
  5. I'm looking for a second opinion since our pedi GI will only further discuss Celiac and way ahead if we agree to biopsy testing. We're in WV, but currently travel to Pittsburgh and are willing to travel to see a good pediatric GI who may give us more options. Thanks!
  6. Short back story: Our now 15 month old starting having "virus like" symptoms at 6 months old (coincidentally at the same time we started feeding him cereal in his baby food). 40 doctors appts and 4 weeks of screaming 20 hours/day later I did some "Google research" and saw that pretty much all of his symptoms mapped to Celiac/gluten intolerance. Our pediatrician dismissed the idea of gluten being the culprit... we took gluten out of his diet and he was 99% better within 4-5 days. The only blood work he had while he was on gluten was tTg, which was 290. Had I known then what I know now, and had our doctor been more knowledgeable, we would have had more testing done at that time. We now know that since he is gluten free he can't have the blood work or biopsy done with any accurate results. We have since started going to a good pedi GI who suggests testing. Considering our son's severe reaction during the time that he was getting gluten, I'm afraid that getting gluten for an extended period of time (prior to testing) could go as far as hospitalizing him. During the time that he was getting gluten - and subsequently when he has accidentally been exposed - he screams non-stop for 18-20 hours/day without sleeping for more than 2-4 hours/day, has all of the "text book" gastro symptoms, and even does things like purposefully banging his head on things. It's awful. It's importatnt to us that he get a diagnosis, but at what cost? He does SO amazingly well gluten-free. The thought of poisoning him just to get testing for a diagnosis is sickening.