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Drs Do Not Want To Test My Chidlren- I Am Positive.


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#1 Mom-of-Two

 
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Posted 20 February 2012 - 06:10 AM

So, I found out I am celiac about 6 weeks ago, I had a biopsy done on Feb 8 that I do not yet have results for- based on my bloodwork my GI (who specializes in celiac) says I am absolutely celiac, did the biopsy to confirm.

She is very good at the celiac stuff, she is great, but in regard to having my kids tested, she did not think it was necessary at this time because they have no symptoms. I was under the assumption that children did not always have classic symptoms, but she says in her experience children have more abdominal symptoms, and growth issues, vitamin/iron absorption issues that usually gets them a celiac diagnosis. My kids are healthy, normal size and never been anemic. My 4 year old has his well checkup next week and I am going to address his size (she says he is totally normal), and I think I will have his iron checked because he will not eat meat at ALL and I do worry about the iron.

The pediatrician says she will not test for celiac, that she refers to a pediatric GI, and if we want to do that, she will send us there to be tested. I don't know what to do, my hubby (who is going gluten free with me) is on board with whatever I want to do. My oldest has never had ANY GI issues in her 7 years, never so much as a tummy ache, is a great eater and has no other signs. My youngest had issues as a newborn-- which resolved and he doesn't have any issues now either. The issues with him as a newborn, I was nursing him exclusively for the first 3 months- he cried for 20/24 hrs for 3 months, no exxageration. We had him checked, they said it was colic, he was healthy, it would pass- but it was unreal. After going nearly out of our minds with exhaustion, our pediatrician suggested a "trial" with soy formula (she suspected he was sensitive to dairy in my diet) and I did cut out my dairy for 3 weeks with no changes. At her recommendation and because we were desperate for relief, we tried the formula. In 24 hrs, he was sleeping 9 hrs at night--- this is no joke. He started sleeping through the night, and became a normal happy baby. It was surreal, and unexpected, and we didn't argue with the facts we had- we kept up with the soy formula and accepted that we may not know what the problem was. And that was ok, we were a mess and had to fix the problem so we could enjoy our baby, and start giving time to our older child who was only 3 at the time.

Because I was crushed over not nursing any longer, I have never really accepted what the problem was and always wondered what caused his discomfort for those 3 months- it did not seem to be an issue with nursing itself, I had met with a nurse and lactation consultant to make sure things were going well.

He went to milk based formula at 8 months, and then transitioned to whole milk at about 14 months, eats plenty of dairy, and grains, and has no issues whatsoever the past 3 years since turning a year old.

Sorry this is long! I am at odds here, and in my heart think I should test them for peace of mind---- but then what, I need to blood test them every year???? Do I need to get them gene tested as well? My GI said that was not a very diagnostic tool.

I have also been told that negative blood tests are common in children- so we may not get an answer either way. IF either of them had positive blood work, I would not put them through a biopsy, I would just keep them gluten-free.

I am afraid that they could be asymptomatic and go years with damage, us not knowing. Just like myself, shocked to find out I have it, and having no idea how long I have been doing damage to my insides!
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#2 kareng

 
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Posted 20 February 2012 - 06:16 AM

This is an example from the Celiac Center at Columbia. Look up Celiac Centers and print up the info and bombard the doctors that refuse to follow the current medical protocols for children of Celiacs.



http://www.celiacdis...-Management.htm

6. Screen family members

First degree relatives are advised to be screened. This is because the disease is common, about 1 in 10 family members have the disease, and it is considered that early diagnosis prevents the development of associated autoimmune diseases, osteoporosis and symptomatic celiac disease.




http://www.celiacdis...rs/C02-What.htm
The majority of individuals with celiac disease are considered to have the silent form.
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#3 semily

 
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Posted 20 February 2012 - 01:41 PM

My older son was diagnosed with celiac disease this fall (at 26 months old). His GI recommended that the immediate family all be screened, including our 8 month old younger son. We each had blood drawn and it showed that none of us are positive for the gluten antibodies, but my husband and younger son did test positive for the gene pairing that predisposes them to develop celiac. We'll probably have them tested once a year going forward even if they're not showing symptoms just to be sure. I'm glad we did the testing so we can be proactive.
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#4 pain*in*my*gut

 
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Posted 20 February 2012 - 02:56 PM

So, I found out I am celiac about 6 weeks ago, I had a biopsy done on Feb 8 that I do not yet have results for- based on my bloodwork my GI (who specializes in celiac) says I am absolutely celiac, did the biopsy to confirm.

She is very good at the celiac stuff, she is great, but in regard to having my kids tested, she did not think it was necessary at this time because they have no symptoms. I was under the assumption that children did not always have classic symptoms, but she says in her experience children have more abdominal symptoms, and growth issues, vitamin/iron absorption issues that usually gets them a celiac diagnosis. My kids are healthy, normal size and never been anemic. My 4 year old has his well checkup next week and I am going to address his size (she says he is totally normal), and I think I will have his iron checked because he will not eat meat at ALL and I do worry about the iron.

The pediatrician says she will not test for celiac, that she refers to a pediatric GI, and if we want to do that, she will send us there to be tested. I don't know what to do, my hubby (who is going gluten free with me) is on board with whatever I want to do. My oldest has never had ANY GI issues in her 7 years, never so much as a tummy ache, is a great eater and has no other signs. My youngest had issues as a newborn-- which resolved and he doesn't have any issues now either. The issues with him as a newborn, I was nursing him exclusively for the first 3 months- he cried for 20/24 hrs for 3 months, no exxageration. We had him checked, they said it was colic, he was healthy, it would pass- but it was unreal. After going nearly out of our minds with exhaustion, our pediatrician suggested a "trial" with soy formula (she suspected he was sensitive to dairy in my diet) and I did cut out my dairy for 3 weeks with no changes. At her recommendation and because we were desperate for relief, we tried the formula. In 24 hrs, he was sleeping 9 hrs at night--- this is no joke. He started sleeping through the night, and became a normal happy baby. It was surreal, and unexpected, and we didn't argue with the facts we had- we kept up with the soy formula and accepted that we may not know what the problem was. And that was ok, we were a mess and had to fix the problem so we could enjoy our baby, and start giving time to our older child who was only 3 at the time.

Because I was crushed over not nursing any longer, I have never really accepted what the problem was and always wondered what caused his discomfort for those 3 months- it did not seem to be an issue with nursing itself, I had met with a nurse and lactation consultant to make sure things were going well.

He went to milk based formula at 8 months, and then transitioned to whole milk at about 14 months, eats plenty of dairy, and grains, and has no issues whatsoever the past 3 years since turning a year old.

Sorry this is long! I am at odds here, and in my heart think I should test them for peace of mind---- but then what, I need to blood test them every year???? Do I need to get them gene tested as well? My GI said that was not a very diagnostic tool.

I have also been told that negative blood tests are common in children- so we may not get an answer either way. IF either of them had positive blood work, I would not put them through a biopsy, I would just keep them gluten-free.

I am afraid that they could be asymptomatic and go years with damage, us not knowing. Just like myself, shocked to find out I have it, and having no idea how long I have been doing damage to my insides!


For the life of me, I DO NOT understand why so many docs refuse to do a simple blood test to screen family members for Celiac when a 1st degree relative is positive!!!! It's not an expensive test, and it's non-invasive. Sure, there is a chance of false negatives in children, but why not do the test, including the genetic screen? No, the gene test is not diagnostic, but if they have the genes, then retest the ABS screen on a regular basis or as symptoms warrant.

You absolutely need to get the kiddos tested. I agree, print out the info on testing of 1st degree relatives and harass the pediatrician until she does her job. Your kids deserve to know before it's too late!
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Celiac DX 9/2011 ~ Gluten free ever since
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

#5 Cathey

 
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Posted 20 February 2012 - 03:46 PM

Mom - trust your gut and have his blood work done or what ever you feel is necessary to keep your peace of mind and what you deem necessary for your child's happiness and health. You mention you can have a referral to a pediatric GI do it, it's only a blood test and they can run all the normal blood work along w/ the Celiac blood tests.

You mention your husband is on board with what ever you need. If you and your husband are going to live a gluten-free life style and home, the children will as well. Just a thought, hope your young one are feeling better soon and healthy.
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#6 Mom-of-Two

 
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Posted 21 February 2012 - 08:06 AM

I have a well visit for my 4 yo next week, I will be getting referral for GI then....my biopsy results came back today "remarkable" damage consitent with celiac, 8-10 biopsies taken. I can't know that and NOT have my own children tested!

Yes, my GI highly suggests having a gluten-free home, just easier, my DH is happy to be on board since he feels better off gluten anyway. I havent decided yet on the kids diets, but I am still processing it all!!
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#7 Cara in Boston

 
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Posted 21 February 2012 - 10:18 AM

All first degree relatives need to be tested. All second degree relatives need to be tested if they have any symptoms. Majority of people with celiac disease have no symptoms at all. Are you sure your MD is a "celiac specialist"?

My 6 year old was diagnosed last March (blood test and biopsy). He has never had a GI symptom in his life. He had a behavior change (started having tantrums and bratty behavior out of the blue) and that is what prompted our pediatrician to test for it. He is above average size for his age, really, really healthy. We were all taken by surprise.

Had the family tested and I was positive too.

Get them tested.

My MD said my negative son (9) needs to be tested every 2 years - sooner if any symptoms develop.

Cara
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#8 Mom-of-Two

 
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Posted 21 February 2012 - 10:44 AM

I actually researched GI docs with a specialty in celiac before choosing, I go to the Cleveland Clinic. I am absolutely going to have them blood tested, if negative follow up as the pediatric GI suggests.

That is interesting about the behavioral changes. My daughter is 7.5 and full of attitude and nasty moods the past few months. Assumed this was normal for her age. :)

Thanks!
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#9 Cara in Boston

 
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Posted 23 February 2012 - 01:42 PM

I think I read somewhere recently that behavior change is now the #1 symptom in kids when first diagnosed. The MD doesn't think he has had it long (we don't know what triggered it).

We knew the behavior was unusual when it became clear that he simply had no control . . . no consequences mattered, thing he enjoyed now just made him angry, etc. The weird thing was that in school, he was still keeping it together. They saw no change at all. I have to admit, we were pretty relieved when we learned of his celiac disease. A few days without gluten and we had our happy little boy back. Much easier than years of therapy (for all involved.)

Cara
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#10 Mdhriggin

 
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Posted 26 February 2012 - 07:23 AM

Trust your gut and get them tested! All first degree relatives should be tested - that's how we found out my husband had celiac after my daughter was diagnosed. Although I respect doctors and know they do not want to run extra tests, this is a simple blood test that can provide so much information. I think as mothers we often question ourselves as to whether we are just making mountains out of molehills, even when we are right. I have learned through personal and family experience that mothers need to stick to their guns when they think there is something wrong with their kids and exhaust all testing options until they are satisfied.
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#11 Mom-of-Two

 
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Posted 27 February 2012 - 05:27 AM

We will be seeing the pediatric GI in a month who will run the celiac panels on them both :)

I am anxious about it but will feel so much better to have answers one way or the other.
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#12 GottaSki

 
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Posted 27 February 2012 - 11:17 AM

I'm with the "trust your gut" camp and have walked a bit of the same path. My kids were tested when I was diagnosed - they were all negative - but all had varied symptoms that could be celiac. While on the fence of whether I should have them have endoscopies I had a genetic blood test run on me. I have double DQ2 genes which means all of my children carry at least one celiac gene. Two kids and one grand went gluten free to see if their symptoms improved. They did. My youngest did not go gluten free, but our home has evolved into a 100% gluten free one over the past three years and his health has also improved. He eats an occasional piece of gluten filled pizza or hamburger bun, but this is rare as he takes his food with him from home like the rest of us.

Having the gene doesn't necessarily mean you will develop Celiac, but finding out whether my children carry the genes was a helpful piece of the puzzle for us.

PS...glad you are getting them tested with peds GI -- but fail to understand why your primary couldn't order a celiac panel to save time along with ruling out a valid health concern.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#13 Mom-of-Two

 
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Posted 27 February 2012 - 11:39 AM

I have the pediatrician well visit tomorrow so I plan to ask her why we can't just have the panel done there-- the med center is 2 mins up the road where our docs are, lab, xray, everything. Yet we will have to drive to the childrens hospital which is about 40 minutes. However, we will do whatever it takes. Their appt is April 2nd so not toonlong of a wait.
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