Posted 18 May 2012 - 06:45 PM
Anyway, since we found out a few days ago, my husband and I have talked a lot about if we will make our household gluten free. I think we probably will go that route. My daughter is only 3, and she has a twin brother, and 2 older siblings. I just feel like it will be very hard especially if her twin brother (they always HAVE to be equal in everything!) can have certain things, but she can't. She isn't old enough to understand why. The older 2 are in school, and they would continue to be able to have foods with gluten in them outside the house, when they are at friends' houses, or at school. Just not at home.
I do feel a bit guilty about taking away all the foods they are used to in the house, but I also feel like it would be so hard to try to keep all the foods separate and make sure my daughter doesn't get a hold of anything she shouldn't, and then just trying to explain why they can eat things but she can't.
We also would have the other 3 tested if her biopsy comes out positive, so who knows, maybe some of the other siblings have it too and we just don't know it yet. I did read something about the chance of her twin having it being even higher than just sibling even though they are fraternal.
Posted 19 May 2012 - 06:28 AM
I know celiac in children is oft times difficult to test and come up positive. But if one child has tested positive, the others need to be tested, too. It would be very uncommon, if at all, that there's a false positive on a celiac panel (false negatives are quite common). If one sibling or parent tests positive, the others have a 1 in 22 chance of also having celiac. Have you or your husband also been tested?
It might be helpful for you to read these Fact Sheets from the University of Chicago Celiac Disease Center.
When your daughter's endscopy is done, make sure you pick up a copy of the pathology report (it usually takes a week or two to get the results). Damage can be patchy and may be missed if biopsies are not taken in the right places.
Edited by sa1937, 19 May 2012 - 06:28 AM.
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010
Posted 19 May 2012 - 06:56 AM
Posted 20 May 2012 - 04:22 AM
Guess what? I pay the bill, so he works for me. I insisted, and he complied.
Don't let your doctor bully you! Celiac is easily missed in a biopsy. Did you ever have bloodwork done on yourself?
Posted 20 May 2012 - 08:11 PM
I am also planning on called the pediatrician tomorrow and asking for the blood test for the other 3 kids as well.
Is there specific blood tests I need to ask for for myself and the kids?
Posted 29 May 2012 - 08:46 PM
Posted 30 May 2012 - 08:10 AM
Posted 30 May 2012 - 05:18 PM
Thank you for the link for the gluten free package! I called the number and left a message... that will be so helpful!
Thanks for checking in It has been so helpful to get input from people who know what we are going through, and have been there themselves!
Posted 06 June 2012 - 12:00 PM
I will say, while I did not want my daughter to have internal damage, I think it's good to get a confirmation with a positive biopsy so you KNOW what you are dealing with, know the symptoms are caused by that damage and can move forward and know how to fix that damage. I am in a place where my daughter just tested positive for blood work but had a normal biopsy all around. Her GI has told me she may have "latent" celiac which means she could develop symptoms at any time, but he has suggested keeping gluten in her diet and monitoring her. Which we do not plan to do- she is seeing another GI dr and then we are going gluten-free either way, but I am hoping to find more support with this new dr, who has a celiac specialty in children. Like I said, I did not want her to have damage, I was just hoping there was some sort of recognizable "change" that would say celiac so that they could confirm that diagnosis!
I would take that news and run with it, and be encouraged. Kids often heal quickly, much quicker than adults!! Your kiddo could be feeling so much better in just a few weeks! I think once you SEE the results for yourself, it will change a lot of how you feel, and you will experience that relief on her behalf!
Also---- I think your preliminary plan to go gluten-free as a household is a great one- if she has a twin sibling, I would strongly suspect that they share that gene, and possible that other siblings have it also- just easier all around!
Posted 06 June 2012 - 08:56 PM
You have to do what works for your family as a whole.
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Posted 07 June 2012 - 08:27 AM
Every now and then he asks if I can "figure out a recipe" for something so he can have it. We tackle it together like a science project and usually come up with something pretty good. He is learning to cook (a skill he will surely need) and we are sort of having fun on this adventure together.
I think it really helps that I cannot eat gluten either . . . it gives him a "partner" in all this. He calls me his "gluten free buddy".
The hardest thing to deal with is when we are out and about and food is offered to us that we cannot eat but his brother can. This happens more than you would think, especially in the summer when Boston is full of tourists. There is always someone handing out free samples somewhere. Usually snacky stuff that looks like it would taste good. I always keep gluten-free treats with me so he can accept a sample, then trade it in for something safe he can eat. We do the same for Halloween - he usually trades it in for legos and not candy - FINE WITH ME!
I honestly don't think he feels like he is missing anything. We talk a lot about nutrition and he will sometimes comment, "I can't eat that, but it really isn't healthy anyway . . . " He is a smart boy.
Your daughter is starting so young, she will do just fine.
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