Just a thought....if it is celiacs they wouldn't catch it with a biopsy if he had been gluten free AT ALL before the test. I have an aunt, uncle, and cousins that are severe celiacs and after talking to her about my son that I think may have celiacs she told me that most tests that are run to find celiacs NEVER catch it. I am still praying for Eli. Whatever he has it needs to be found soon. There is only so long a child and mother can handle what you are going through.
Amie, did they consider Cyclic Vomiting Syndrome? Does he seem to match the symptoms for that? I have a cousin who suffers with it.
I've heard the Celiac's are very difficult to diagnose and many doctors are reluctant to do the right testing for it. I don't know enough about it to say whether or not that might be it. They have to missing something.
He hadn't been GF before the test. He was for a few days, but after the first meeting with the GI (November 1) he told me to let Eli eat whatever he wanted. Also, I've read/heard from just about everyone that the tests are actually very accurate. *shrug* As to ulcers, I don't see how that's possible at this point. The labs didn't reflect them plus we have a dozen+ pictures of the inside of his stomach and not a single ulcer. We only use bottled water (from several grocery stores). Our tap water smells like a swimming pool. *shudder* Cyclic Vomiting Syndrome hasn't been mentioned but I will bring it up.
I think you said he was scoped, right? Upper GI endoscopy? If so, Celiacs would be found doing that if it was severe enough that he wasn't keeping food down. I will, say, though, my GI doc had said that if it is truly Celiacs, and you've been going gluten free, your villi start healing after just 12 hours. Our bodies are such an amazing thing. So sorry for your son, and for you, as you continue through this stressful process. Continuing to pray for all of you!!!!
Are there any signs of encephalitus (spelling?) I pray that your son's illness will be uncovered and cured soon. Stay strong.
Encephalitis? That hasn't been mentioned. I talked with the nurse again yesterday, who will call back after talking with the doctor today. She was home sick yesterday and still checked her messages and returned calls... from home!
Not a day goes by I don't pray for your family to get some answers and relief. Keep keeping us updated...
They switched his medicine starting Saturday. Now he's on 15mg of Prevacid twice a day. He didn't throw up at all Saturday. Just a couple of times (and very small amounts) Sunday night. Only 4 times all day today; again, small amounts. So I'd say it's working!
Patryk still prays for him nightly! Patryk: So maybe when Eli feels better, we can visit him and play together! Me: Yea, son, he lives far away in a different state. We'll probably never see him. Patryk: Well, God can then, and he'll make Eli feel better! Glad he is doing better! Thanks for the update!
Nope. OTC Prevacid. Still pricey for an OTC med, but not nearly $35 a week. I have to split the pill and pour the little beads into apple sauce, so it's a little bit of a hassle, but small price to pay for him doing better.
