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OBXMom

Member Since 24 Mar 2008
Offline Last Active Apr 08 2010 07:02 AM
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Posts I've Made

In Topic: Iga Levels.. What?

08 April 2010 - 06:57 AM

Why don't you call your doctor's office and say you won't be able to sleep until you find out what the range is? I don't have any confidence that they would know, since your doctor was so misinformed about celiac, but I bet they'd find out and tell you. In a quick search on this site I found your son's number would be in the low normal of some ranges, and outside in the high side of others. Unfortunately, celiac disease can be really hard to diagnose in little ones, as the test results aren't always accurate.

I know how hard it can be to wait for those specialist appointments, and I just encourage you to keep pushing when you get there until you get answers. I wish someone had encouraged me to do that - we went for regular 6 month appointments for years before my son got a celiac diagnosis. Don't let them just send you away with a prescription or two, like I did. Hope your son feels better soon.

In Topic: Celiac?

05 April 2010 - 05:20 AM

p.s. I meant blood sugar and celiacs... not blood sugar and diabetes :)


There is definitely a link. I have read that all diabetic children should be tested for celiac, as an alarming percentage of them have it. Autoimmune diseases in general tend to cluster, meaning having one puts you at risk for developing others. My son has vitiligo in addition to celiac. It is just a few white patches on his skin, and he is so pale that they aren't very noticeable, so I have chosen not to treat him. But still, getting that diagnosis was a reminder to me of the unfortunate nature of autoimmune diseases.

I can't tell you how many times my kids have overdone the sweets - like yesterday with Easter baskets, and they never ended up in such bad shape. Definitely don't blame yourself about the cookies - the emergency rooms would have lines out the door all the time if they were the culprit. I am really sorry about your daughter's experience, and do let us know what you find out.

In Topic: Carnegie Deli, Dallas Bbq In Nyc

03 April 2010 - 08:31 AM

Thank you both for your help. I will add what I learned, too, in case anyone in the future does a search with a similar question. Carnegie Deli was worried about cross contamination in their sliced meats, but recommended the tuna and chicken salads. Dallas BBQ said their roasted chicken is safe, and recommended asking for a baked potato instead of the fries. My daughter also did go to Sambuca, and LOVED their gluten free pasta.

In Topic: Growing Pains And Joint Pain In Young Children

03 April 2010 - 08:17 AM

My son did have joint and bone pain, and it took about two years of gluten free living for it to stop. I kept wondering if he could have another autoimmune problem, it was scary. I wonder in his case if it was partially the rapid bone growth that caused the problem. He was a small, slow grower and immediately began to grow faster when he went gluten free. One year after diagnosis he pulverized an arm doing just normal kid running around, and it was because the rapid growth had caused a cyst to develop in his bone. (It was a horrible day before we learned from the specialist that the cyst was benign, but that is another story.) Apparently cyst development in bones, especially during periods of rapid growth, are not at all uncommon, but you normally do not find out about them unless an accident causes the bone to break.

My son is just now up to a normal stamina, two and a half years in. My husband and I look at each other and smile all the time when he talks about wanting to be an incredible athlete, because those were not dreams he could have dreamed before. He is not the most talented athlete on his team, but years of pent up desire bursts out of him everytime he plays, and it is wonderful to see. I know lots of kids bounce back much more quickly, but for parents who think it isn't happening quickly enough, I encourage you not to give up hope. It can definitely still happen.

In Topic: Gi Viruses And Celiac

26 March 2010 - 06:18 AM

My son's tummy bugs were worse before his celiac diagnosis, and have gradually disappeared (knock on wood). He still is susceptible to stomach pain unrelated to viruses. For him, it has been constipation - not that we were aware of, since he was still "going", but which was found by xray, and difficulties with other foods. The constipation is unlikely for Jude after his diarrhea, but it is possible that in his weakened state he is having a hard time digesting certain foods that he normally doesn't have a problem with. Corn, soy and milk all gave my son pain early on, but we don't have to limit them anymore. I know your son just started the prevacid, but long term use of prevacid was also one of my son's culprits, so if your son takes any other medications, I'd think about that, too. There are unfortunately many reasons for tummy pain, and I know it is just so frustrating when your child hurts and you can't fix it immediately. I hope Jude feels better soon.