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CarolinaKip

Children Tested?

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I've been trying to communicate with my children's doctor's about having them checked for celiac.. I finally got word this morning that he said "Celiac is asymptomatic and as long the children have no weight loss, pain etc there is no need to test them" They don't have alot of symptoms like those, but my son is ADHD, my daughter gets a lot of headaches and had ecsema early childhood. I feel at the end of the day I am trying to prevent them from getting as sick as I am now. I want them tested. What do you all think here? I am new to this and wondering.

Wanted to share what my dentist said to me during my last visit. I wanted to know if the toothpaste was gluten free. They couldn't tell me. The dentist said "you're not going to ingest it and it's just trace amounts if it is" It was clear he had no clue about celiac. I told them "surely I am not the only celiac you have here??!


How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in your life you will have been all of these.

George Washington Carver

Blood work positive 4/10

Endo biopsy positive 5/10

Gluten free 5/10

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Go to the University of Chicago Celiac Center website. There are fact sheets. One talks about testing children of a Celiac and what tests to get. I printed it and took it to my pediatrician.


 

 

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My kid's pediatrician REFUSED to test my children. I was so mad that I scheduled an appointment just to talk to him. I was going to go in armed with information and articles. My husband ultimately convinced me not to go and to ask my kid's allergist/immunologist (he also knew that I would be very confrontational). All I had to do was get on the phone and explain why I was requesting testing. Without any hesitation an order was faxed to the lab and my kids got their screening. Now was that so hard? Evidently it was for the pediatrician. I would love to find a different ped but unfortunately there isn't any other locally that I want to take them to. My oldest had chronic tonsillitis and strep so much that by the age of 4 he had his tonsills/adnoids out. He was good for about 6 months and then constant sinus infections. I finaly got frustrated with the ped and self reffered to the allergist (when he was 6 ) my youngest one was seeing. A month later I bring his allergy serum to the local peds office so he can get his weekly allergy shots (allergist was 70 miles away) and the doctor was floored. Also my youngest one had alot of problems when he was a baby so I insisted he refer us to an allergist at his 1 year check up. After our first appointment the specialist said to us "why wasn't this kid sent here much sooner." That really bothered me. All that time wasted farting along at the peds. Water under the bridge, but the celiac has taught me that I need to advocate for myself and my kids because if we don't who will? Both my kids are doing great and my youngest is the healthiest one now. I now make it a point to see the nurse practitioner in the office. I recently found a new PCP and I'm considering asking if she will take children.


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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I know exactly how you feel. I am newly diagnosed and sometimes I feel like there is nothing I can do to make other people aware of how serious this condition is... As far as toothpaste goes, all Crest toothpastes are gluten free, I am not sure about others...

As far as getting kids tested-I hear you. I am going through the same thing... Even my family (I have MDs in my own family!!!!) think I am crazy that I am so adamant to get kids tested for celiac because it is an "autoimmune disorder and NOT genetic"... But on the otehr hand, everyone thought I was crazy when I was having very vague symptoms and until I got so sick that I stopped eating altogether and lost 15 lbs nobody toom ME seriously. I am sorry, I cannot provide any sound advice, but I'd say go for what you believe!!!! Only YOU know what is BEST for your chldren and you cannot be overprotective when it concerns their health.

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Sheez, then why are children diagnosed by the age of 2 in Italy? Uninformed doctors can be very frustrating.

I'd do what is recommended above and print out information from various Celiac sources and centers and take that to your doc.

Some celiacs are asymptomatic but that does not mean damage is not being done.


Diagnosed 8-8-08 (I think I'll remember that date!)

Positive blood panel

Endoscopy a little later on confirmed, via Small Intestine Biopsy

Adult son diagnosed Celiac in his late 20s

Suspect my Mother undiagnosed Celiac

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My children's dr told me the same thing this week since I "only have 1 of the genes -DQ2- its unlikely that they would be predisposed too"? HUH????? that is totally incorrect information. I was caught off guard when I talked with her. She says if they aren't having symptoms, no need to get tested. I have a 4 yr old and a 1 yr old. Everytime they want waffles or a pbj sandwhich (on whole wheat) I can't help but feel like I might be poisioning them. Ugh. I'd really like to get them tested anyway. I think if I insist, their dr will order the labs. If not, I'll be shopping around for another dr.

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My pediatrician thought it might be a good idea to blood test every year or 2 even if negative and no symptoms. I just took the Chicago fact sheet to make sure we get the right ones taken.


 

 

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Posts like these make me so sad and so mad. My DS was diagnosed with failure to thrive at a year. He had dropped from the 65th percentile at birth to the -10. He weighed at a year 2 lbs more than his sister did at birth. They tested him for everything but celiac. Both of my kids were sick their entire childhoods and the ped said that they both didn't like school and the stomach problems were just because they didn't want to go. My kids weren't tested until their teens when I was finally diagnosed and both had positive bloodwork. Unfortunately they weren't diagnosed soon enough for my son to ever reach anywhere near his full height. Oh and these kids who 'just didn't like school' are both been overachievers in college and one even got 2 bachelors degrees before age 24. Doctors are so ignorant in this country when it comes to celiac.

If you suspect there is an issue demand testing. If your child has any symptoms, even stuff like ADD, ADHD or moodiness give the diet a shot. If you can get them tested first do so, if not just try them on the diet. It could make a big difference even if they come out negative with the blood tests and 'gene' panels or your doctor refuses to test.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thank you for your replies. I am going to have them tested. I'll print off what tests they need. Their doctor told he would do if I wanted it, but I think he still thinks I don't know what I'm doing. My daughter is moody at times and my son started telling me he just didn't feel right after eating. That started about a week ago. He said he didn't feel pain,. but like he had eaten too much and was going to be sick. He is 17. Thanks for the info, it's a big help!


How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in your life you will have been all of these.

George Washington Carver

Blood work positive 4/10

Endo biopsy positive 5/10

Gluten free 5/10

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Hmmm...I told the kids' ped that the GI doctor wanted them tested and he would have to order the tests and which ones. No flack from him. Also told him every couple years they need to be retested. I think I am fortunate in that regard.

I cannot believe :o that some of your doctor's will not test. They don't have to have symptoms to have celiac.


Son officially diagnosed 3.18.10 with celiac biopsy results. age 12.

daughter, 10, diagnosed fructose intolerant 2009.

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