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jaimi alderson

Do I Test My Kids?

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I have a 4yo & a 1yo. I was diagnosed last week with celiac by biopsy & bloodtest. My kids have no symptoms. Except maybe my 1yo has had acid reflux since birth with no weight problems (he is in 50% and on zantac & reglan since 6 wks old) and my 4 yo does have tantrums a few times a week (I read someone said "outbursts" could be related but don't all 4 yo's have tantrums occasionally?) Anyway my 4 yo has always been in 25% for weight with no digestive probs. I do not want to have their blood tested as it is a horrible thing to go through with very small kids...esp the 1 yo. However I do not want them to be causing damage that could have been prevented. But I REALLY do not want to do the bloodwork as in my mind they just have no symptoms. Can anyone tell me I am ok to wait to have them tested until some real symptoms appear? Which is hopefully never?


Jaimi Alderson

Medford, Oregon

randomjaimi@charter.net

Mother of daughter Davis (4) & son Hannigan (1)

Positive Blood Test 3-15-06

Positive Biopsy 3-29-06

Gluten-free since 3-15-06

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I'm glad you asked, this has been a question on my mind for some time. I worry about my 8 yr old, who seems healthy, is not skinny (she's plump), and is doing great except for the occasional stomach ache maybe once/week and then she goes #2 a lot. I had her show it to me (ahhh.... parenthood) and it was mostly solid. I think sometimes she gets caught up in playing and doesn't want to stop for the bathroom, but then her body says "hello!!". She does have beautiful lashes. But then I think I'm just paranoid!!!

And if I think this diet is hard on ME, as an 8 year old it must feel like heck.

Looking forward to advice from other parents!!


Ev in Michigan

GFDF since 8/20/05

Negative Bloodwork ~

Dr. encourages me to trust my

"Gut Reaction"

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I'm planning on testing both of my children. They both have alleriges, and I am celiac and casien intolerant. I have both a celiac gene, and a gluten intolerant gene. As such I know that both children have one of those 2 genes. Neither shows any classic symptoms, but they both show some symptoms. Even if they weren't, I want to know what genetics they have, so that if in the future their celiac triggers (Mine had very little noticeable symptoms until I was 31 and had a vasectomy) they can avoid the long struggle to figure out what is wrong with them!!

I'm also convincing my family to get tested as well! Since both parents had one of the both genes I have, my mom has one for sure, and she has some symptoms, and both my brothers only have a 25% chance of not having any genes, and that is only if my parents only had one gene each! I can see celiac symptoms in all of them, but none wants to admit it!!


Michael J. MacCartney

gluten-free 2005-June-24 Dairy free 2005-July-26

gluten / casein intolerant

HLA-DQ 2,3 (Subtype 2,7)

Diagnosed Celiac 2006-April-24

Father of:

Michael II HLA-DQ 2,1 (Subtype 2,6) - Allergic to Peanuts, tree nuts, eggs, and milk

William HLA-DQ 2,1 (Subtype 2,5) - Allergy free

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Strandard expert advice is for ALL first-degree relatives to be tested. The 1-year-old is still a little young. In my family, my kids, siblings and parents all got tested. My father was positive even with virtually no symptoms.

richard

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I have 2 girls who showed no signs of celiac. I was diagnosed last year and I struggled with this question. I did go ahead and had them tested. My 4 year old came back postive both with bloodwork and her biopsy. I am hoping that by catching it this early she will avoid the problems I have experienced. I am glad I had her tested and she is coping with the diet change better than I expected.

I hope your kids come back with negative results but if they are positive I think the earlier the are treated the better they will handle it.

I hope this helps.


Sue

Diagnosed April 2005 via bloodwork and endoscopy

4 year old daughter diagnosed March 2006 via bloodwork and endoscopy

She was completely asymptomatic

4 year old also diagnosed with Graves disease Sept 2006

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I'm hesitant for a couple reasons - first, my bloodwork came back absolutely negative. I also had food allergy testing done (thru blood work, not scratch tests) and those came back with minimal reactions to foods. (Both my dr. and dietician said they had never seen one with such a low response). So, if I do the bloodwork - and hers come back negative... then will I ever know?


Ev in Michigan

GFDF since 8/20/05

Negative Bloodwork ~

Dr. encourages me to trust my

"Gut Reaction"

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OK, I was diagnosed when I was a very small baby, and I am very grateful, now I don't know what gluten tastes like, so I don't crave it. Even if your child doesn't show symptoms, then you should have them testsed, becasue what if they do have it? then they will grow up learning the diet, instead of having years of being sick, and then realizing that celiac might be the problem. Save them the hurt and pain, and then they might be grateful for it later.

I would have been a lot worse off if i hadn't been diagnosed when I was little. I think that testing all little kids is the way to go becasue then you won't have to deal with all the complications later on in life that they might develop while they were not of the gluten-free diet, and then

if they don't have high antibodies, jsut make sure to test them every couple of years, or if they start showing symptoms.


Molly

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I was in the hospital for 3 moonths, starving to death, and then finally tested for celiac disease, but even if i didn't hav symptoms, i would have like to know when i was little, rather than being kinda sick my entire life, and then having more complications.


Molly

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I had my daughters tested, ages 5 and 7. It was not a lot of fun, let me tell you, but I was very happy when results came back negative. While I've been warned they could still be triggered later in life, it is very unlikely. I will watch them for symptoms and have them rechecked if necessary. It makes me feel much better knowing they can be normal kids, at least for now. BTW, they had more than one test done, to improve the accuracy of the results.


LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

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Feel free to disregard this since I don't have children yet :D

As there is a high rate of Celiac running in families, I plan to have my future children tested early on, including gene tests (this way I can know if I have to worry or not). Having no symptoms does not mean that people do not have Celiac ... I think the current estimation is that 70% of Celiacs are completely asymptomatic/'silent' Celiacs. If my children have the genes, I plan to have the blood work done every year. I know its no fun, but after learning so much about Celiac, I want to be able to protect them as much as I can and hopefully prevent them from much of the pain that I went through. (Yes, I have thought about this a lot because I hate the possibility that I could pass this on! Husband is a non-Celiac so I can't blame him if they get it, haha)

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My younger son was diagnosed by blood test and biopsy when he was 5.5. He had VERY low iron and he first had a blood test in November that discovered the anemia. Then another blood test in December to see if the liquid iron was working. Then in January, and then in June he had another blood test only this time they took 5 vials. Then he had the biopsy. After the biopsy came back positive my older son, husband and I all had the blood test. All came back negative. He wasn't happy about getting the blood tests, but he knew that they were necessary. He never cried about it. My then 7.5 year old. Holy Cow! He freaked out and he only had the one blood test done. We had to remind him that Ty had had a blood test every month for several months.

I told them both not to look at the needle, that it would just feel like a pinch and then it'd be done with.

I'd have the four year old tested for sure and maybe the one year old should wait a bit, I've heard the tests are unreliable in the under two crowd.


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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My then 7.5 year old. Holy Cow! He freaked out and he only had the one blood test done.

My 7 year old put on a big show, too. They were great in the ACH outpatient lab, but they had to get this very large man to come and hold her arm straight. What a production! My 5 year old would have been mostly fine (a little teary), but her sister's antics really set her off.


LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

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I agree with 2boys4me. My daughter is 11 mos and has had lots of hospitalizations, sticks, IVs, you name it. My son has been tested for everything because he was so sick for so long before we found celiac disease. It may hurt a little, but it's over quickly. It's nothing ice cream won't cure! The 1 year old may still be too young. We've had trouble getting conclusive results on our kids (son tested at 2 and under), but have had dramatic dietary responses. I never had any issues with gluten, or so I thought. I went on the gluten-free diet because my daughter was nursing and had dramatic health improvements with joint pain, skin rashes (probably DH), irritability, etc. I didn't have any GI symptoms, except the gas and it's gone now too. The joint pain had been a problem all my life with no diagnosis. I tell you all of this because the symptoms aren't always so obvious. Get them tested to make sure. I strongly encourage you to make them do the genetic test at the same time. That way if they don't have the genes, you don't have to worry about it anymore. We made this mistake and had to have 2nd tests done later.

Good luck with your decision.


If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.

Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)

Husband - Type 1 diabetic, Negative bloodwork

Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06

Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05

"All things happen for good for those who love God..." Romans 8:28

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You say no symptons... I just wanna state that hte first thing that tip'd my wife and I off to the possiblity of Celiac was ACID REFLUX from birth with our son. In fact for a long time we treated it with varisous erflex meds like Prolisec, Regulan, Zantec and so on.

I would test them. The breif moment of discomfort that the blood test is could stop a life time of duress.


- Vincent -

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About the blood tests, your children should get used to it. I sure am, they ususally have to poke me 9-15 times before they get a vain that will give blood. Then they take like 11 vials at a time. I had so many blood tests when I was little, that now they don't even hurt me anymore.


Molly

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My 7 year old put on a big show, too. They were great in the ACH outpatient lab, but they had to get this very large man to come and hold her arm straight. What a production! My 5 year old would have been mostly fine (a little teary), but her sister's antics really set her off.

We didn't go to ACH, just the nearest Calgary Lab Services where it took 2 people (me and a nurse) to hold him still and another one to get the blood. Ty had a follow-up last month and then next March we'll go to the new "lego" ACH. Have you had our follow-up endoscopy? I've read a few posts where you intend to.


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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I would get them tested. All my children have been tested, even the baby and he's 9 months old. I know that blood draws are difficult for little ones but it's pain that is over quickly. I'd prefer the 5 mins of upset vs months, possibly years of damage that could be done if it's not found.

Good luck.


Amy

Tony age 6

diagnosed with diabetes at age 1

diagnosed with celiac at age 3

positive blood work

inconclusive biopsy

positive genetic markers

*Special Needs Mom*

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Guest elysealec

I hope your children do not have celiac, but I was diagnosed at 39 and I did the blood test all three of my children. My oldest who was seven at the time had been off the charts her whole life standing well above her classmates, yet she was the one who came back with a positive blood test. I thought they had the tests mixed up as I also have a son who is very slight. She had always had tantrums and separation anxiety. I saw an article by Dr. Ivor Hill out of Baptist Hospital in Wakeforest which spoke directly of these behavioral issues. I spoke with him and he performed the endoscopy and she had already suffered significant damage. Yet she had no gastro issues at all. After being on the diet for a short time, her behavior had drastically changed and a year later, I have a different person living in my house. She has adjusted to the diet very well as well. I am jst so happy we found out then rather than go through years of damage. Hope this helps.

Vicki

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You say no symptons... I just wanna state that hte first thing that tip'd my wife and I off to the possiblity of Celiac was ACID REFLUX from birth with our son. In fact for a long time we treated it with varisous erflex meds like Prolisec, Regulan, Zantec and so on.

I would test them. The breif moment of discomfort that the blood test is could stop a life time of duress.

Hello,

My boys are 6 and 11, both tested. We used Enterolab for the diagnosis. It is non invasive and not painful at all. We chose the complete gluten sensitivity panel w/genetic testing and casein testing. Both came back positive. My younger boy with moderate malsorb.. They are responding very well to Gluten-free Casein-free diet. We thought our 6 yr old was autistic. He is not at all. He has just been sick for 4 years. My 11 yr old was diagnosed with encopresis(chronic D and constip.) when he was 4. The doctors were wrong. The sooner you get your children tested, the better off they are. There have been huge changes in my 6 yr old. My dad can't believe he is the same boy from 6 mos ago. My 11 yr old. is growing and eating like crazy.

I would strongly encourage you to get your children tested.

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Thank you so much to everyone for replying & giving me your stories. I am definitely going to have my kids tested genetically next week when my pediatrician is back in town. I am really just taking them off gluten right now as they don't seem well to me but I am NOT RIGHT IN THE HEAD after doing all this research & stumbling into this new world of reading every label! So I know taking them off gluten before testing would make any celiac panel worthless but the genetic test would still work. Just reading all the things that could be caused by celiac disease & knowing there is a 1 in 22 chance they have it has made me say NO MORE GLUTEN. Thank you all so very much & please let me know if you have anymore comments to my new plan.


Jaimi Alderson

Medford, Oregon

randomjaimi@charter.net

Mother of daughter Davis (4) & son Hannigan (1)

Positive Blood Test 3-15-06

Positive Biopsy 3-29-06

Gluten-free since 3-15-06

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I dont think that getting a blood test is a "horrible" experience. It's unpleasant but if done by an experienced nurse is over quickly. My 4 year old celiac son has had a ton of blood draws and rarely even cries for them. My daughter is tested every year and it's not been bad. Yes, it hurts but it's very necessary, IMO.

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I dont think that getting a blood test is a "horrible" experience. It's unpleasant but if done by an experienced nurse is over quickly. My 4 year old celiac son has had a ton of blood draws and rarely even cries for them. My daughter is tested every year and it's not been bad. Yes, it hurts but it's very necessary, IMO.

My 18month son had no problem with the blood test. He watched the whole thing and babled at the nurse. Kids are alot tougher then we give them credit for I think.


- Vincent -

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