semily I'm sorry, I don't have anything to add, but it sounds very scary - I hope that you are able to get some answers and some help soon! Prayers coming your way!
Taffers, you might want to find out if your issue is Celiac or just a wheat sensitivity. While the latter is definitely more common than most of us think, Celiac can have some autoimmune problems or potential problems (so knowing to look out for them is good).
I do have several autoimmune issues as well as infertility, which is why I was tested for CD. I did tons and tons of research and insisted on CD testing. I did have a biopsy about 5 years ago, which did not show evidence of CD, but I had the bloodwork done more recently do to autoimmune related skin issues that developed recently. All the tests showed definite positive, but this was all with a doctor who I wasn't very comfortable with. My new doctor, who is more of a specialist, re-tested, but it was after I had been GF for a short time. He wanted to do the challenge, but after getting pregnant, I just never got tested again so it hasn't gotten to the point of doing a biopsy again. Since I'm fairly asymptomatic in terms of the stomach problems, etc., I just decided to wait until after the pregnancy to worry about it again.
My aunt was diagnosed with CD -I'm thinking it wasn't until she was in her 50's and lost a part of her small intestines (I think-but could be wrong!) as a result. Sorry I don't have a lot of details about her case -she lives across country and I don't correspond with her much. I have heard that even if you aren't bothered by it, it could be causing some serious damage!
Well, the latest is we've cut gluten from his diet, and have switched him to lactose-free milk because I think that was irritating him also. He's been getting a little bit better - more energetic and himself - each day. This is the fourth full day of being gluten-free and the second full day of switching milks. The doctor ordered a blood draw Friday afternoon that will test for celiac and whatever the usual blood panel tests for. He'd been off gluten for about 24 hours at that point, but she said it would be okay. (?)
She also referred us to a pediatric gastroenterologist, and said to call to set up the appointment now because it takes a couple months to get in. Well, I called today and the first appointment available (with a nurse practitioner) was JANUARY 30. Then the intake person asked what his diagnosis was, and after briefly explaining the situation they put me on hold and came back saying the doctor wants to see him immediately. So we're going Wednesday. I'm pretty terrified that we're considered that urgent a case.
Pine Tree- I wondered if you'd been down this road too!
taffers- Thanks. The did a blood draw for the celiac panel last Friday, so we'll see...
bensgirl1222- Thanks so much, Jess.
Scooter- Do you keep your girls on a gluten-free diet? How did you know they couldn't tolerate wheat?
We were also considered an urgent case, but it all turned out fine. If it is celiac just remember that while it's a big lifestyle change, it's very simple to treat and very manageable. The growing awareness/diagnosis of celiac means that even things like traveling abroad are getting easier all the time. I'm glad you're getting into the specialist so quickly, let us know what happens.
Pinetree- Did you need to change your DD's diet at all? DS's doc wants him to eat more meat and veggies - when we were answering questions about his diet it became obvious he doesn't eat either. At all. Right now we're mostly focused on getting him to eat period, but I am trying to introduce some meats and veggies too. However, he's a 2-year-old. It's not as easy as the doctor thinks to just get him to eat chicken, fish and legumes!
semily, I have no experience at all with gastro issues, but I did want to post quickly to applaud you for being so persistent about your feelings about the situation. One of the things I have learned in my short time as a parent has been to trust the instincts. I hope you get some answers soon.
Instead of having "answers" on a math test, they should just call them "impressions," and if you got a different "impression," so what, can't we all be brothers?
semily I am so glad to read your update and thought about you over the weekend wondering if you had been to a Pediatric GI yet - I'm so glad they were able to get you in that quickly! i had to take my DS1 to one last year and drive to a different city for a 3 week out appointment, rather than one that was months out. I hope you're able to get some answers.
As far as eating meat -will he even eat chicken nuggets? I know, not the healthiest and you have the whole gluten issue too, but I figure better than nothing. My almost 2 year old is really loving dips -ketchup, Sweet baby Rays or ranch dressing are all big hits.
semily - we had to dramatic changes to DD's diet because she was so underweight. The ped dietician and gastroenterologist gave us something called Duocal which is a high calorie powder that we had to add to all of her food. We had to keep detailed food diaries and send them every week to the office. We were actually instructed to do a high calorie/almost junk food diet for a few weeks to try to get her weight up. Less fruit/veggies, more meat and fats. DD hates milk so that was an added challenge. I've got lots of ideas on this if you ever need some advice. We kept a bottle of olive oil on the table and doused everything with oil for about a year. DD was always a veggie eater so that wasn't our issue, in fact I think part of the problem was that we were eating TOO many veggies, beans, whole grains etc...
Semily, I knew they couldn't tolerate dairy first, when I was nursing them as newborns. My ODD had terrible stomach aches and BM issues and it took me awhile to realize it was dairy. Took me even longer to realize just how little dairy she can have at all, but now I know she can have a small amount of cheese (or ice cream) a couple times a week and be ok. Cream, milk, etc is not ok and we have to be very careful with pizza. My twins were worse and any dairy at all--even if I took ONE bite of a dessert with dairy--would make them scream in pain for literally days. Thank goodness they grew out of that. But I really think it's good you're considering the dairy part of it, too, since I think a lot of the symptoms are similar to celiac's.
I knew my twins couldn't have wheat because when they were babies we were introducing foods one at a time. They actually reacted to all grains except rice. Their bellies would bloat a bit, they'd have trouble sleeping, be fussier in general, and the BMs were awful. I think it was worse for DD than DS. Warning: TMI. She had mucous and even blood in her poop. He did too, but not as much as her. It was really scary. That's why the allergist and I were thinking they might have Celiac's. In our particular case, they did not, and later on we were able to slowly start introducing grains. So they're not on a gluten-free diet anymore. I know your situation is different because your son isn't a baby anymore. But several of our close friends are gluten-free and it's really not as bad as it seems. They are able to have gluten-free bread and pasta and pizza dough. Trader Joe's even makes gluten-free mac & cheese (rice noodles). A lot of regular grocery stores sell gluten-free flour so you can make cakes or cupcakes for birthdays--I often do this for our parties because so many friends are off of wheat. And I wouldn't worry that it's an urgent situation. A child being in pain is going to be considered urgent and it's better he gets in soon than has to suffer like this for 4 more months. Good luck!
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Originally Posted by merjmo
So we're going Wednesday. I'm pretty terrified that we're considered that urgent a case. 
