We're still waiting for the celiac blood test results, but in the meantime DS is definitely responding well to the gluten-free diet. He had a great day at daycare yesterday and his appetite is building each day. Yesterday was the first day that he was playing when I picked him up instead of being held by a teacher, and this morning he housed an apple with almond butter and three pieces of GF toast with butter. His tummy is still pretty bloated at night though and he still has major gas. BMs are much less frequent (1-3 a day vs 5-6) and starting to get a tad darker and firmer (sorry- that's gross!).
His other blood test results came back and several things looked slightly off, including his TSH, alkaline phosphate and AST levels. We have an appointment this afternoon to talk about the results more, and do a weight check. The celiac results won't be avaialble until next week (!!), so the doctor is anxious to see those and put the other blood test results into greater context.
My son's celiac panel came back glaringly positive shortly after I last posted. His TTG IgA number was greater than 100, and the normal level is 4. His TTG IgG number was 19.3, and the normal level is 6.0. This blood panel often produces false negatives, but almost never, ever produces false positives, so a celiac diagnosis it is.
He's continued to respond well to the gluten-free diet, and really turned around for the better late last week. His energy is way back up, he's gained about 10 ozs, and his appetite is quite big. He is himself again and it is WONDERFUL!! His belly is still really distended though, and while his poops have gone down in frequency they're still messy and can be very, very stinky (so his food still isn't getting processed quite right). But it will take time.
While I think we're certainly going in the right direction, I feel we need much more education and direction on what it really means for him to have celiac, and what we need to do. We had a phone consult with a nutritionist in town who specializes in celiac in kids, and he was waaaaaay too far on one end of the spectrum for us. While he seemed very nice and knowledgable, he scared the bejusus out of us about the dangers of cross-contamination (any molecule of wheat that DS ingests will increase his mortality xxx%), and he was dismayed to hear DS goes to daycare. He said ALL the families he works with have the mother at home with the child/children and they've wiped the house clean of all gluten and are 100% dedicated to preventing cross-contamination 24-hours a day. That's just not the approach we're going to take. He also advised us to cut 100% of dairy immedately too, but again, I'm not sure that's necessary.
It was all too absolute and I want to find someone who fits with us better. So today I've been researching and trying to find someone else local. I live in a pretty isolated area so it is not easy!! I called the other two nearby hospitals and one has ONE pediatric nutritionist on staff, but she is booked through January. The other hospital doesn't have one. There are lots of alternative medicine people, but I already went that route with the guy mentioned above and I feel I need someone/something more concrete. This led me to the Children's Hospital in Denver, which is ranked #5 nationally.
They can get us in as early as next Wednesday at 2:00. The appointment would be 2 parts- first we'd meet with the pediatric gastroenterologist, and then we'd meet with a nutrition specialist. The appt with the doctor would cover what's been happening and map out a plan of action. It would be an extremely long day, but DS and I could go and come back in the same day. We could take a 6 am flight and get a hotel for the day so he could nap and rest before the 2 pm appt. (The hospital has arrangements with several hotels just for that reason.) Then we could take an 8:00 pm flight home. We could also fly in the evening before. (the flight is only an hour)
What do you think? Would you do it? Is that too much for him? I was very clear with the office that we'd be traveling and I wanted it to be worth the trip. They said about half their patients do the same thing. I'm on the fence - I want to get the best advice/direction we can, as soon as possible, but don't want to be crazy. I'm worried I'd subject DS to a grueling day and have it be a disaster/waste like the appt two weeks ago.
I would do it. You need to get a solid handle on everything now. It's only one day, he'll survive. Bring a bag full of emergency toys, bring a portable DVD player, lots of snacks etc... so you can keep him distracted while you meet with the specialists. Bring a notebook and pen so you can take notes in case you're a bit distracted. I know when we met with the gastro and the nutritionist we were just overwhelmed with info.
Have you thought about going to Denver without your DS? You could call the office and speak to the nurse there and ask if you really need to have your DS at the appointment. If you bring the medical records with you, you might be able to get everything done without even needing to bring him with you. It's not like they'll do an additional exam on him since his celiac panel came back positive. Now it's just a matter of figuring out treatments and maybe follow up testing.
Big, big hugs to you! There are amazing celiac message boards and resources for everything from travel to restaurant guides. There is lots of support out there. On the plus side celiac is a very treatable condition. Overwhelming in the beginning, but every celiac I know says that the diet stuff just becomes normal after awhile, but it does take some time.
Super mom award to you as well for pursuing it and changing doctors and doing what's best for your little one!
DS has gained 1.5 pounds in the past 6 days!!! His appetite is ginormous all the sudden. It's getting easier to get him to eat new foods too - last night he ate half a box of gluten free chicken nuggets at dinner - our first major meat success! He refused the corn I cooked, but at least didn't freak out that it was on his plate! We're definitely seeing leaps and bounds of improvement.
pinetree- Thanks so much for the kind words! That's a great idea to see if I can go without him. Maybe they even do phone consults too... I'll call this afternoon and see what other options there are. Since we're out of the scary acute phase I don't feel like we have to go next week, and while we could make it work, it's not ideal timing-wise.
Semily I'm so glad that you have figured this out! I agree with what pinetree said, but I think I'd lean towards taking him with you -just for the plane ride factor ( I think I'm crazy now that I've typed that -you'll have to deal with car seat, etc).
Just thought I'd post a random update - DS1 has continued to thrive. He's up to 28 pounds and almost 35", a far cry from 21 pounds and 30" when this started 9.5 months ago. We still worry he's not growing enough to catch up - he's barely on the growth chart, but we're doing our best to make him eat, eat, eat. We're going back to the out-of-state specialist in a few weeks for a check up. He is smart as a whip and incredibly athletic! He'll be three next month.
The newest concern is DS2. He's almost 17 months now and has gained only a few ounces since his 1 year checkup with no increase in length (he's been stuck in 12 month bottoms since December). Over the last 6 weeks he's starting to show some of the other gastro and behavioral symptoms too. He had blood drawn this morning to check things out...
ETA: Just read back to my last post here - we did end up seeing the pediatric gastroenterologist in Denver and he was FANTASTIC. It was everything we needed and more, and he's been following up with us via phone since our appointment in November. The children's hospital was so amazing it felt like a day at a children's museum!
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That's a great idea to see if I can go without him. Maybe they even do phone consults too... I'll call this afternoon and see what other options there are. Since we're out of the scary acute phase I don't feel like we have to go next week, and while we could make it work, it's not ideal timing-wise.
