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soberose1

Needs Some Mom & Dads Advice!

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Needs some Mom & Dads Advice!!! I hope it is okay to post this here. I have been dx celiac and happy to have anwsers!! This past week devouring everything I can get my hands on, information wise. REDFLAGS for both my kids but my 6 yr old FOR SURE!!! I almost want to run into the peds. office screaming... Now my experience with Doctors has left me tramatized... and I dont want to jump the gun or appear like a complete mad woman... My child has always sturggled with BM's swinging to both extremes.. His teacher sent him home a month back for 'explosive D noises coming from the bathroom' NOT SICK we ended up playing WII all afternoon.. Big toe nail curls up. Weird rashes pop up every now and then, (he has never EVEn noticed them, I am the one who noticed. assuming they DONT itch) and drum roll, BEHAVIORS..spacing out..irritable..could all be normal 6 yr old stuff....but I dont know....with all this new info in my head..maybe I just dont want to be alone???

SOooo Any thoughts?? Experience??? Advice??? Should I go with the gut ~running into the office????

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Quite honestly, immediate relatives should be screened for Celiac due to it's hereditary nature. When my daughter was diagnosed, my son, husband and I had the blood test done (per the recommendation of the GI). I would start there. Then, if your son's test comes back negative, you can approach the doctor about a trial diet. Is your doctor aware of your son's GI issues and rashes - even if you don't take him in for them, do you mention it during the yearly wellness visits?

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I have never mentioned it to my Doc and we JUST switched them to his office. In fact this is like a AH HA moment of sooo many times blowing it off as no fever, no big deal, or IDK maybe he is getting a bug?? Okay no more bath soap... ya know?? HAs not helped that I have been sicker than a dog for 2 years chasing doctors...relying on everyone else to help ME care for the kids.. Appt is set so I will try not to run in there screaming!!!

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Certainly look into testing and do everything you can to pursue an offical Dx. You've got several kinds of tests available to help you get some answers. Many of us don't have an offical DX but it is worth trying to get for some esp. kids, IMHO, as it can be of benefit down the road. This has traditionally been the area of gastroenterologists but there are several kinds of health care practitioners these days who are knowledgeable and can run tests. Ask the local celiac disease support group for recommendations. My son's ped. was resistant and clueless as was his former allergist, but our current allergist, of all people, is quite knowledgeable and "gets it" and runs tests according to current recommended protocol and through labs that are reputable for running tests for celiac disease. So you never know where you'll find support. Beat the bushes a little and see what comes of it.

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Hang in there mom. It's not a race. It's a process. I tell myself that the world doesn't have to be magically transormed tomorrow, even though I'd like it that way. I want to make up for 10 years in a day! well, maybe in 1 year! but even then, that's not realistic for us. Take it one day, one step at a time. I know how you feel. It took me a good long time to get myself back together enough to help my kiddo and I'm still working on us both. It hasn't been so obvious what's going on with him though so has taken longer. Anyway, all the best to you both on your new journey.

Maybe print out some checklist of symptoms to take in with you to show the doc. Here's one, that may/may not be the best. There are others out there. http://www.csaceliacs.org/celiac_symptoms.php

Maybe make of list of the testing options too.

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The ped should screen them based on your diagnoses alone. (They are your biological children, right?) :)

You can have the check list of symptoms. List of odd behaviors, i.e. chewing food and spitting it out. (My daughter did that, not really every Celiac kid's symptom. Just keep it for reference after starting the gluten free diet to compare changes.

Please get the "official" diagnoses if you can. I guarantee, you will run into skeptics/uninformed idiots. If you run into an idiot who has your child in their care (i.e. teacher, scout leader, parent of their friend) it easier for the point to get accross that this is a serious medical reason for your child to have extra care for their food items. I had a stupid brownie mom run her crumby fingers all around my daughter's food plate, because she took her food from her to wait for the other girl's to eat. (Mind you this was waiting for them to go through a buffet line, not eating in front of people that had nothing to eat.) <_<

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Thanks everyone!! WE have not said much to the kids about the issue but they will be going into the Doc tommorroow. I want to get this done asap, as they are already eatting less gluten. My son is great!! Mommy does that have gluuuutin? My lil'girl has already told me she can eat gluten... aside from rashes I dont have the same flags for her.. Thanks for the the link too!! I am bringing it with me!! ~ If I have suffered for any reason, I hope it would be to make there lives the best they could possibly be!!

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