Posted 07 March 2011 - 06:02 AM
Posted 07 March 2011 - 10:01 AM
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 March 2011 - 03:08 PM
Once a person goes gluten-free, they can get REALLY sensitive to gluten, so I don't recommend adding it back in at least until your son can tell you there's an issue. My son is 6, has celiac disease, and has been gluten-free since November 2010. He was given gluten in December at a daycamp and actually developed a neurological tic and other side effects for over 6 weeks. Prior to going gluten-free, his reaction was actually somewhat minor.
I know it sounds like alot, but you really get into the rhythm of gluten-free quickly if you just stick to it and dedicate to it. My son has his first birthday party coming up since being diagnosed and it's at a laser tag place where they serve pizza and popcorn and they'll be cake. I just talked to the owner of the establishment about bringing Chris is own pizza, the popcorn is individually bagged, and I'm going to bring a gluten-free cupcake or two (I make them up and keep in the freezer already with icing). No sweat. Actually a few weeks ago, he went skiing with Cub Scouts and the food was all inclusive to the price - my husband called to see if they'd have anything Chris could eat and the place had a full gluten free menu.
It's a bit of a challenge, but the failure to thrive thing is scary (my son dropped from 75 height/25 weight to 15% height and 3% weight in just over a year). I would do anything to stop that.
I'm having a baby in 2 weeks that has DS. She will naturally be more likely to develop celiac disease because of the DS and the fact that Chris has it puts her at an almost certainty. I'm probably going to just keep her gluten-free from the start. Once any DS related medical issues are resolved and she's old enough to communicate, I might add it back in to see if she develops the sensitivity, but as celiac disease needs a trigger event, that's a little different then someone who already shows signs of gluten sensitivity.
Whatever you decide to do - good luck - it's a hard thing to try to figure out.
We thought my 21 mo old son might have a wheat or gluten issue, but his labs came back in negative. He has the classic look of very thin arms/legs and a large distended belly. It is like a miracle since we put him gluten-free -- he was sick at least every other week for months and months and for 6 weeks straight, now he has been healthy for 3 weeks. He had lost a lot of weight and is now packing it back on. He acts like himself again and I can no longer wrap my fingers completely around his thigh. We switched him to Lactaid after a week of gluten-free and that seemed to clear up the remaining issues (we even did a 1 day test back on regular milk and could immediately tell a difference). But the celiac tests were negative. We don't know what to make of it. Our pediatrician thinks he is now healthy (no flu, stomach bug, etc) and that's the change, but we aren't so convinced. Should we do an eteralab (sp?) test? Do those virtually all come back positive? Do we check with an allergist for other allergies (but he has no skin issues)? My DH is convinced gluten-free is best for him and could care less what the medical community thinks. I don't mind keeping our home gluten-free, but I would love not to have to freak out if he has a cupcake at a friend's birthday party or to be able to go out to eat without worrying about cross- contamination. Our Dr. would like us to put him back on gluten this summer (after the flu season has passed) to give him a gluten-challenge. DH would want to wait a few years until he can really communicate with us how he feels. I don't know how quickly we'd be able to see the gluten-free impact - would it be obvious like the milk? His poop is more solid now, but he never had the serious runs, so I don't know that watching his poop could teach us much. Sigh, we just don't know what to do. This is causing some marital discord, so we'd love some advice.
Posted 07 March 2011 - 03:41 PM
He is very astute. You should keep him. And gluten free!
Posted 07 March 2011 - 05:27 PM
My 2 cents? Trust the excellent results with the gluten free diet. Hubby is wise.
Too many of us have been burned by what "the medical community" thinks. Left undiagnosed and likely to develop more and more autoimmune diseases and chronic pain. Blood work is negative all too often.
A "flu" doesn't cause thin arms, legs and a distended belly.
If your child is thriving...what more proof do you need? Of course, it is your decision, but even I wouldn't do the gluten challenge. I NEVER want to feel as lousy/spacey/sick as gluten made me feel ever again.
I am thrilled for you both that your son is doing so well!! Many Blessings!
"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
"If you want to lift yourself up, lift up someone else" Booker T. Washington
“If idiots could fly, the sky would be like an airport.”― Laura Davenport
"Do or do not. There is no try. "- Yoda.
"LTES" Gem 2014
Misdiagnosed for 25+ years; Finally Diagnosed with Celiac 11/01/10. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
Posted 08 March 2011 - 07:46 AM
Posted 08 March 2011 - 05:18 PM
I agree with your husband, I would wait to do the challenge until he is older and he can tell you how he is feeling.
Posted 09 March 2011 - 08:59 AM
GI hasn't tested her for Celiac yet bc he's afraid it will just come back negative either way. she's only 22mo.
he thinks the only BEST answer is to test her via scope, which (i called yesterday) he's willing to do if all else fails in other testing.
Diagnosed Celiac Disease
2001 via endoscope
gluten free for 10 years!
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