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kkkkaty

Having My Children Tested

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I was recently diagnosed with Celiac and on a recent trip to my son's pediatrician I asked if we should test my 2 boys for the disease. The Dr. said no but the more I read the more I feel it would be irresponsible NOT to test. I'm kind of baffled actually at the lack of awareness our Drs.(mine and the kids) have about this disease. Happily I've found a celiac specialist who I'm going to see soon. I'll ask him about testing the boys but what do people here think? What would you do, or, have you done?

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How old are your boys, what was his reasoning for the 'no', and how were you diagnosed?

I'm sure you'll find many posts here that lend support to the recommendation by Celiac experts to test all first degree relatives of those with confirmed Celiac.

http://www.celiacdiseasecenter.columbia.ed...nts/A02-FAQ.htm

http://www.celiacdisease.net/testing

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i don't have kids yet but i fully intend on having them tested when the time comes. it is, after all, recommended that all first-degree relatives get tested. kids/parents, siblings, etc. i'm still trying to convince my dad and sister but it's a losing battle!


5/23/2008 - blood positive for antibodies

6/24/2008 - negative biopsy

8/11/2008 - DQ2 gene present

7/1/2008 - gluten-free

(and dairy-light until 12/1/2008)

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How old are your boys, what was his reasoning for the 'no', and how were you diagnosed?

I'm sure you'll find many posts here that lend support to the recommendation by Celiac experts to test all first degree relatives of those with confirmed Celiac.

http://www.celiacdiseasecenter.columbia.ed...nts/A02-FAQ.htm

http://www.celiacdisease.net/testing

My boys are 12 and 16. Their Doctor said we should not test unless they showed symptoms. Though I was only diagnosed in August, (blood test )I'm quite sure I've had the disease for years. After many trips to the doctor and many tests, it was an on call doc who thought to test for Celiac. The second she mentioned it I thought it made so much sense so I was not really surprised when she called me at home late the evening to say I was "extremely positive" and should begin a gluten free diet immediately.

Thanks for the links.

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Those words from your doctor is the thinking that has lead to an average of 4-11 years for Celiacs to get diagnosed. And, my hunch is that those 'without' symptoms take that or longer. One of the best ways to find the asymptomatic Celiacs is through their Celiac relatives.

I'd find a doctor who knows something about Celiac, since this one obviously doesn't. Its frustrating to hear how many doctors are not up to date on the literature - which states that it appears that asymptomatic Celiacs are actually more common than traditional Celiacs.

"By far, the majority of those with celiac disease are asymptomatic and not currently diagnosed" http://www.celiacdiseasecenter.columbia.ed...A03-WhatAre.htm

Good for you for following your mother instincts :) And what a wonderful doctor - especially an on call doctor to catch it!

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I, too, would feel irresponsible if I didn't test my son for some aspect of celiac. My brother has it, one of his daughters has it, and I'm pretty sure I have it, although I couldn't find a doctor to test me before I went gluten-free and won't go back on gluten to get tested. Too many neurological problems!

My mom reminded me over Chistmas that it took her 11 years to get pregnant with me, and she has IBS, Diverticulitis, hypothyroidism, and Sjogren's. Sound familiar?

I have this hunch that if I had been gluten-free most of my life, maybe I wouldn't have Narcolepsy and other problems. But I'll never know for sure. I'm going to HLA type myself and my son when I get some money so I can know if I should be working to prevent him from developing any celiac-related disorders. I'd feel so guilty if I knew I could do something to prevent it and I didn't. At least this way I'll know if there's even a chance of him being gluten intolerant before I do anything drastic. His pediatricians don't seem to think it's an issue, but they also didn't know it's possible to be asymptomatic for celiac or have neurological problems from eating gluten, so I don't take their opinion very seriously.

I've noticed he gets attention problems and hyperactive when he eats gluten, which is relatively new, and he has little bumps all over his arms & legs, like ingrown hairs. Maybe it's unrelated, and maybe I'm being an 'overanxious mother' but even his dad has suggested we should try it. It's just that he's only 4 and I fear it would be difficult to coordinate this with his preschool without a doctor's diagnosis.

Knowing our family history, I am fully prepared for at least one of our children to develop serious Celiac at some point, if we ever have more.

Celiac has been around since at least the time of the ancient Greeks...why is it still so obscure and misunderstood?? I'm baffled.

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I didn't even bother testing my kids. They are all gluten-free.

My oldest son had years of "bathroom problems." My middle kid's eczema got better when the family went "gluten-lite" (in order to facilitate my own gluten-free-ness), came back with gluten, and disappeared again on a 100% gluten-free diet. My daughter's symptoms are inconsistent, but I figure there's no reason to keep her ON gluten.

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I see no reason for not testing your children. This is their health. If I had not been diagnosed my brother and mother would not have been either. It is better to know and live healthy than ignore what might be and let problems occur.

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I've noticed he gets attention problems and hyperactive when he eats gluten, which is relatively new, and he has little bumps all over his arms & legs, like ingrown hairs. Maybe it's unrelated, and maybe I'm being an 'overanxious mother' but even his dad has suggested we should try it. It's just that he's only 4 and I fear it would be difficult to coordinate this with his preschool without a doctor's diagnosis.

Knowing our family history, I am fully prepared for at least one of our children to develop serious Celiac at some point, if we ever have more.

I'd say you have your answer already, since you already noticed problems when he eats gluten.

Unlike your doctors, you already KNOW that by the time symptoms appear, damage has already been done. Why would you even consider letting them eat gluten?

I know it's inconvenient to have to deal with the preschool, but damaging your child further would be a lot more inconvenient.

It sounds like your hubby is already on board (far too often, hubbies can get in the way for this sort of thing), so if I were you, I would have the whole household go gluten-free and never look back.

Think of it this way: if you let your children stay on gluten (with at least one of them already reacting to it, by your own observation), you will very likely look back in ten years or so and WISH that you had gotten them off gluten earlier.

If you keep them gluten-free, what have they lost? Nothing. It's not like gluten is a necessary nutrient! And you can make ANYTHING they like gluten-free--pizza, bread, cupcakes, cake, pancakes, cookies, you name it!

The longer you wait, the more difficult it will be to convince your KIDS of the necessity of avoiding gluten--they will be literally addicted to it (it causes an opioid response in the brain to those affected) and will cheat.

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I have two children, neither of whom have Celiac symptoms. I had both of them tested when they were at the doctor's office for some other reason. Daughter's came back negative last fall, and we haven't received Son's yet (he was just tested last week). I would tell your pediatrician that you feel it would be irresponsible NOT to test them for it, and that you insist.


Diagnosed Celiac in June 2008 by biopsy and blood tests.

DQ2.2 (HLA DQA1*0201:DQB1*0202) and DQ2.5trans (HLA DQA1*05) positive.

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The small bumps on the arms and legs thing (I can't remember the specific name, but it does have one) we were told by both our Ped. and Allergist is a non-specific immune response; i.e. your body is having an immune response to "something" but we don't know what. we had them looked at on our daughter (who was diagnosed yesterday with Celiacs) last Fall when we first started checking this stuff out.

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I was recently diagnosed with Celiac and on a recent trip to my son's pediatrician I asked if we should test my 2 boys for the disease. The Dr. said no but the more I read the more I feel it would be irresponsible NOT to test. I'm kind of baffled actually at the lack of awareness our Drs.(mine and the kids) have about this disease. Happily I've found a celiac specialist who I'm going to see soon. I'll ask him about testing the boys but what do people here think? What would you do, or, have you done?

My husband was just diagnosed and I have two girls. One is 2 and the other is six months. My two year old was asked to be tested and she came back negative. She was brought in because she is eating gluten. They will wait on my six month old until she is older or if we see any developmental or physcial changes.

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I had mine tested and they were both negative, but we learned that one is lactose intolerant. His life is better now that we know. See a specialist to be sure.

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Thanks for all the feedback. I had the boys tested and they are both negative. A friend w/ celiac told me she has her daughter tested every 3 years. Seems like a good plan.

In the meantime, my kids seem happy eating mostly gluten free (I do all the cooking) and should they ever have celiac disease, or meet someone with celiac disease, they'll be well equipped to handle it!

Cheers!

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One thing you can do is get the gene test for them. That would let you know if you could rule it out in the future, or if you have to keep testing. I plan on doing that for my daughter who doesn't seem to have it (no symptoms, negative TTG). That way we'll know if we need to keep testing for it.

But if you have a celiac in the family everybody should be tested. Your ped should know that. This is a genetic disease that can present with no symptoms for years.

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My boys are 12 and 16. Their Doctor said we should not test unless they showed symptoms. Though I was only diagnosed in August, (blood test )I'm quite sure I've had the disease for years. After many trips to the doctor and many tests, it was an on call doc who thought to test for Celiac. The second she mentioned it I thought it made so much sense so I was not really surprised when she called me at home late the evening to say I was "extremely positive" and should begin a gluten free diet immediately.

Thanks for the links.

My husband is a Pediatrician, we went right to a reliable source for this answer. According to the Pediatric GI he consulted, the usual recommendation is blood screening test is immed. with a positive first degree relative (at their age), second degree relatives are just as important (Aunt, Uncle, Cousin) to go ahead and do at least one screening.

Re-testing for asymtomatic children with a first degree relative should be done every 5 years. If IGA/ IGG def. then genetic testing is a must.

We are paying for genetic testing for my son so we will know once and for all if he needs to worry about celiac. I am a celiac, my hubby is Scotch-Irish. Hmmm... wonder what those results wil be! lol!

sorry for all the edits, my dog is going to town brooing and it is making it hard to concentrate, lol!

P.S. This GI is from Europe, so he is really on top of things, we are so lucky. I wish he would see me too, lol!

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My boys are 12 and 16. Their Doctor said we should not test unless they showed symptoms. Though I was only diagnosed in August, (blood test )I'm quite sure I've had the disease for years. After many trips to the doctor and many tests, it was an on call doc who thought to test for Celiac. The second she mentioned it I thought it made so much sense so I was not really surprised when she called me at home late the evening to say I was "extremely positive" and should begin a gluten free diet immediately.

Thanks for the links.

Hi, I have to speak up on this one because I never showed classic symptoms and it took my almost dying in my thirties to figure out what was wrong with me. When I was 10 years old I went to the Dr. because I had little bumps all over the back of my arms. That was the first sign of the nutrient deficiencies that almost got me. I have lived a good life, but I cannot even tell you how much suffering I would have been spared had I been diagnosed then! Even if the tests come back negagive (like mine did) be on the look out for the little things that get dismissed by the drs. as "just one of those things". - oh...and I don't have the bumps anymore lol ;) Good luck!

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