celiacsmom

I was on here a about 1½ mos ago when my son was dx w/Celiac. We immediately went gluten-free and he improved dramatically. Now he has been throwing up again and gets that pale, sickly look that most of you are probably very familiar with. Luckily he hasn't started losing weight again, but of course I have to figure out where he's getting exposed to gluten. The only two places he eats are at home and at day care. I have caught them slipping up a couple of times recently which concerns me that since he hasn't been throwing up at school (I've alerted them that its happening at home) they don't fully understand the necessity to be 100% gluten-free or as close as possible. I also should mention that he is EXTREMELY sensitive. His tTg was 208. The Dr at the Children's Hosp we went to had never seen one that high and she's been a Ped GI specialist for over 30 yrs. His pediatrician said he's never seen a tTg over 125. In fact last week his ped said that he would strongly suggest that I stay home with him until he is old enough to effectively communicate his needs and ask questions. Financially, we just can't do that, but if that's what it comes to we'll have to figure it out. I just can't seem to get it through the day care's heads how critical it is that he not be exposed to gluten, period - including in play dough, paints and other arts & craft supplies. They provide food so I also have to work with the cook as well as his teachers. Don't get me wrong, this is an excellent day care facility & I am otherwise very happy with them. Have any of the other parents here had similar experiences? What did you do?

My other question is what would you do with regards to Easter dinner at a neighbor's house? They have asked me what he can have and I've given them lots of info, but I just don't know yet don't want them to be offended if I bring a dinner for him. Short of going over the menu and the specific ingredients in each and every product they plan to use, I will not be sure - not to mention the cross-contamination issue. Then I feel like I'm being such a pain in the you-know-what when I say I'll need to go over everything with them.

I know you will all give some great support and advice so I'm thanking you now!! )

Heidi

We've found Jax are great also!

I found this article on the Kraft website a few weeks ago. It has a lot of excellent info regarding Kraft products that you will find helpful...and YES A-1 is gluten free. )

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Hey everyone - We made the almost 2 hour treck yesterday to see the pediatric GI specialist. She definitely concurred that there is no doubt he has celiac disease given his classic symptoms (vomiting, weight loss - 3 lbs in 3 weeks or 12% of his starting weight, pot belly, muscle atrophy/flabby arms and legs, fatigue) and his positive ttg of 208. Just curious - how high were your children's ttg's? All the docs I speak with are shocked at his level of 208. One even said he's never seen it over 150 or so. The GI doc suggested we be absolutely meticulous regarding his gulten at least in the beginning i.e. separate butter, wiping counters before prepping his food and just generally keeping his stuff totaly separate from gluten containing foods. I'm totally good with that! I just want him to start getting better - FAST. He's such a sick little guy right now. I was borderline on a meltdown last night when I realized that we had almost nothing in the house he could eat (after my hubby so lovingly put the steak that we were going to have in a non-gluten-free marinade). I ended up giving Cody a PB&J on tapioca bread...not interested and fed it to the dog ($$$$$!!!!)...EnviroKidz cereal w/Lactid...not interested...gluten-free hot dog...pushed it away. He just wanted the tatertots and chix fingers his sis was having. She was thrilled when I told her to go eat in the livingroom and watch cartoons! LOL I was so frustrated and I couldn't get him to eat anything. The overwhelming nature of getting going on the gluten-free diet also hit me all at once. My hubby was awesome though and kept a level head and took control by grabbing the lists of OK foods that we have and starting a shopping list. He then got me to sit down with the gluten-free cookbook and find a recipe so I can make some gluten-free cupcakes for the bday party we are going to tomorrow. I just hope I can find the flour locally!! Speaking of which - where can you get Xanthan Gum? I also was a little frustrated with the doc because her answer to so many of my questions was "I don't know". I realize there is a lot of I Don't Know surrounding this disease, but some of her I Don't Knows were to questions about meds such as Augmentin (he has an ear infection & has a week left on the med), Children's Motrin and Children's Tylenol. Shouldn't a PEDIATRIC GI specialist who lectures on celiac disease know the answer to at least whether or not a celiac disease kid can have Children's OTC pain relievers?????? I was able to find the answer fairly quickly when I got home, but still. I also asked her about support groups/services and she said to look online. I am definitely going to contact Boston Children's for future care and support.

I know I'm rambling (I have a tendancy to do that when I've got a lot on my mind) and I've got to get some work done!!

Heidi

Good for you! You can do it & I'm sure you'll be feeling great soon!

Thank you! Thank you! That is exactly what I am looking for and this will really help the cook at the day care!

Thank you so much for your responses to my biopsy question! What a great network you have here! I also called the Gastro. dept as Children's Hospital Boston and spoke with a nurse there to get a better feel for what the biopsy tells you. After discussing it with my hubby tonight we decided it makes no sense what-so-ever to put him through it. So, the diet starts tomorrow morning. I went to a local grocery store that I was told carries gluten-free products and found lots of stuff but most of it is snacks, cereals & some baking ingredients so I've got those covered but I'm not quite yet ready to start the baking. I think I'll give that a shot this weekend. What I'm really wondering is does anyone know of a comprehensive list of dos & dont's? I know I'll be able to get help from a nutritionist, but who knows how long it will be until I can get an appointment and Cody just can't go the next month or two on EnviroKids cereal and snack bars! LOL I really want to get going on learning all those hidden sources of gluten - i.e. I know Malt is a no-no, but what about maltodextrin? How about lunch meats? Modified Food Starch is a no-no, but how about modified corn starch? As all you been there done that parents know, my list of what's OK, what's not seems to be growing exponentially at this point.

I'm so overwhelmed, but I also know that this can be done and isn't too bad once you get used to it and build your confidence in choosing the right things. Baby steps, right?

OK - Doc (my little guy) is actually sleeping well at the moment and it's 12:30 am so I really better take advantage of these precious few moments of potential sleep. ;o)

Again, thanks so much for the support I've already seen and received here! I just can't wait to be able to give the support also & I apologize for this turning into somewhat of a BLOG!!! LOL

Heidi

Hi all - We are still thinking about whether or not to put our son through the biopsy. I am the type who needs absolute confirmation of things, BUT I can also put this aside if the biopsy really isn't necessary. He's been a pretty sick guy for a few weeks now and has lost almost 10% of his weight in 2 ½ weeks. I just want to get him feeling better ASAP (and I'm pretty darn sick of cleaning up puke!).

Also, are there any parents here in VT, NH, MA who considered Children's Hospital at Dartmouth vs. Boston Children's Hospital?

Thanks and I'm looking forward to getting to know some of you over the long haul.

Heidi