dalss1

Thanks for the important information, and for the vote of confidence about us being careful. Man, there is nobody more careful, and yet I feel like I must be missing something because of the numbers. We went back to our GI yesterday and he agreed that we should NOT do a blood test right now because the numbers frighten me too much. Sam has actually gained two pounds since my last post (actually, since July), although he is still less than 3% on the height chart. He has never been above 3% in his whole life! Now we are off again to the endochronologist to check growth hormones (we've been back and forth between endo and GI). In December, we will check blood results again...and I'm keeping my fingers crossed that he is just taking a long time to heal. As for the constipation, he is on Miralax and cannot get off of it without severe pain (even if we miss just one day's dose). I will take your suggestions about lactose and see if that helps his constipation. Also, we've added a probiotic since our last exam in July, so that could be helping his upset stomach (he is actually hungry now!). Thanks again for your advice. Hope all is well with your daughter.

Hi!

We have had the exact same problem with our daughter. Original number was 180+ then 6 months in she was down to 70+ then another 4 months and she was still high. Doctor wants the number under 19. We were going totally NUTS! You want to talk about anal - I think we were scarring this poor kid for life because we started just freaking out about everything she came in contact with.

Here is our current stance: We stopped doing blood work and watching the numbers constantly. We are super tight about our control and have stopped letting her eat anything at all that wasn't prepared in our home (we've just started to ease up on this a tiny, tiny bit). For instance, she now occasionally (and I mean really infrequently) can get an ice cream out but the server has to change gloves use a new, clean scoop and open a fresh container of ice cream - yeah, they love us!).

The other thing is that it can feel really infuriating when it is implied that you are missing some daily gluten and it certainly made us a little more than defensive however, here are a few things we decided to consider as a possibility:

1. we no longer use any item that is produced on machinery that also handles wheat and are extremely cautious of items from a facility that processes wheat (which eliminates almost anything from trader joes). And, we allow absolutely no gluten in our house - including pet food.

2. We learned that vit. e - usually referred to as tocopheryl acetate can be wheat germ oil. It can also be derived from soy or coconut or other sources but is completely unclear. I think food products are required to say if it is wheat but cosmetics are not. We were using a lip balm on our daughter's lips that contained vit. e - when we called the manufacturer we were told it was indeed wheat germ oil - yikes - right on the mouth!! Also, watch out for vitamins, make sure to get ones that actually say gluten free - or check with the manufacturer.

3. The other thing we did was switch brands of all of our daily staples - ie. peanut butter, canned beans, pasta sauce, etc. anything that was not specifically labeled gluten-free (and even some that were). We figured if there was something we just weren't catching we'd never know so we researched new brands and just switched as many as we could.

Sorry, this is becoming a really long post, feel free to PM me if you want more info. But the long and short of it is that after doing all of this, she is doing much better. Way less constipated and gassy. She now "goes" every other day rather than once every week or two. And she's growing and feeling well. The other major key is that she has been doing much better since being out of school. I think there is a fair amount of cross contamination from really crumby, touchy little kids that we just have not been able to control.

The other possibility is that perhaps these things just take time. I have never gotten a clear answer on how long it should be expected to take to really clear those antibodies out of the body. Good luck!

Barb

Just wondering how you all found out what you were allergic to...seems like just eliminating certain ingredients and them reintroducing them one at a time would take a lifetime to confirm. Do we need to visit an allergist? (My children are diagnosed celiac and one is still having problems.)

Our two boys (ages 9 and 13) have been diagnosed since Jan. 2006 (endoscopy to confirm in Feb. 2006), and we have been gluten-free ever since. We are especially careful at restaurants, and the kids take their gluten-free lunches to school. Believe me, no one could be more anal about their food than me (their mom), but our youngest son's blood tests keep coming back high. His original number was 142...now it's 14, but our GI doctor says he wants it under 7, and that he MUST be getting wheat/gluten on a daily basis. He had another scope Aug. 3 and the results show some improvement in inflamation, but still abnormal cells. He is a little guy, and we are trying everything possible to get him to grow. He is N-E-V-E-R hungry, and our GI wants to put him on Periactin, but I can't find the manufacturer's phone number to confirm it's gluten-free. We are at a loss as to why our son is still not healed, and why is he constipated, bloated and not growing well if he's been gluten-free for 20 months now. Does anyone have any answers or similar problems that they've dealt with? Do we get a new doctor? Thanks for any advice.....