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What Were Your Kids Symptoms?


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21 replies to this topic

#1 agemme12

 
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Posted 07 February 2012 - 05:33 AM

Hi guys. So 3 days before Christmas i was diagnosed with celiac. I never really had many symptoms that i even picked up on. I started losing weight though in may then lost 20 lbs by Christmas without working out. anyway...so i have 2 kids. my daughter is 2.5 and my son 15 months. After i became diagnosed i called my primary whom is also my kids pedi. She said not to worry and they didn't need to be tested. I thought this was a little odd. So i felt my daughter may have this but wanted to see what you guys thought. I was always little at 2years i was 24 lbs and she is 23.5 lbs at 2.5.... however she has been 23.5 pounds for over a year now. She has grown height wise but nothing else....she looks a tad bloated sometimes, bruises easily if she falls real quick or bumps into something, she could eat all day and doesn't seem to gain anything, oh and since she was 4 weeks old she was constipated...has prune juice raisins and pears all the time. Does any of this sound like it could be celiac? I always thought oh she is tiny like me, has a fast metabolism and after many nutritionist visits and trying shakes to put weight on (to which she ended up having reactions to) nothing seemed to happen.

We did an experiment for the past 2 weeks we gave her gluten free food and she put on 2 lbs. Then over 4 days she lost the weight again once back to a normal diet. Weird? Also another question if i wanted to have her blood tested and had recently given her gluten-free food for two weeks what would be the appropriate time to wait to have it done so it would show up positive if she had it. Everyone told me if you on it a few weeks it will come up negative. Sorry for the long rant just seeking advice and new to this.
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#2 mommida

 
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Posted 07 February 2012 - 07:19 AM

My daughter was having major GI symptoms from eating gluten. "D", vomitting, swollen belly led to her being diagnosed at 17 months old.

She needs to be tested. She has a first degree relative diagnosed and she is having GI symptoms. She needs to be eating gluten for the testing.
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#3 agemme12

 
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Posted 07 February 2012 - 08:29 AM

thanks mommida...do you know how long they should be eating gluten for like will a week do it? they have docs appts next wed and im only giving her gluten from now till then anyway but didnt know if it will need to be a longer period of time before a blood test
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#4 mommida

 
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Posted 07 February 2012 - 11:58 AM

Going back 7 years ago, we were told at least 6 weeks on a gluten diet.
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#5 Avalon451

 
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Posted 08 February 2012 - 08:41 AM

But she was only gluten-free for 2 weeks, so it might be worth trying it, anyway. Know that blood tests in children are especially notorious for false negatives. Be sure they are giving her the full panel... ummm... I forget what all that is, but it's listed in the celiac.com article about testing.

And I agree with mommida. Any PCP who says your kids don't need to be tested is NOT up on their celiac knowledge. You're a first degree relative with confirmed celiac, your kids need to be tested.

Hope everything goes well and she feels better soon!
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Avalon

16 y.o. DD diagnosed with DH and celiac (positive blood and biopsies), January 2012
14 y.o. and 9 y.o. DDs, positive blood tests Jan. 2012, no biopsies; assumed celiac
Me, 47 y.o., lifetime of symptoms, negative blood and biopsy, assumed NCGI
DH 51, negative blood but went gluten-free with us anyway.
My husband is our best supporter!

#6 Roda

 
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Posted 08 February 2012 - 10:02 PM

Youngest son(age 7):
delayed umbilical separation(2.5 months old before it came off)horrible reflux, chronic rhinosinusitis and strep, food reactions to dairy/rice/oatmeal/treenuts(he would either get hives or a rash on his head), yeast overgrowth in bowel from to many antibiotics, thrush and yeast infections in groin area, reactive airway disease(probably caused by the reflux). All of these things he had from around 1 month old to about 16 months. I eliminated all the things I knew he reacted to out of my diet since I breastfed him till he was 16 months. I had inadvertently went gluten light(didn't know about gluten then just realized that in hindsite) and when he was 14 months old I started having issues because I went back on a regular diet. I eventually was diagnosed about 2.5 years later when he was almost 4. He had been seeing an allergist/immunologist since he was 14 months old and for the most part when I was diagnosed his issues had gone and he seemed healthy. I had him blood tested after my diagnosis and he was negative, so he went on as normal. Two years later (6 months with noticible symptoms of belly aches and reflux, horrible mood swings and OCD type behavior) he tested positive on his celiac blood work. He has been gluten free since. We regretted not getting the scope/biopsy so we tried a gluten challenge after he was gluten free for 4.5 months. His symptoms all came back and they were worse than before. We had to stop the challenge after three days. There was no way he could tolerate it. Looking back he probably had celiac as a baby too.

Oldest son(age 11):
Constipation issues since birth. He was son so many things for the constipation and none of it worked..(prunes, apple juice, mineral oil, lots of fresh fruits and veggies, fleets enemas, suppositories, mirilax, etc.) From age 2.5-4 chronic strep and tonsillitis. Had tonsils out and was good for about 6 months. Then he started getting recurrent sinus infections. He was diagnosed with allergies at age 6 and has done immunotherpy since. Some of his allergies have changed over the years. He too was blood tested after my diagnosis and was negative. Since his bowel issues seemed very much like mine when I was young I had him retested several times for celiac. He has always been negative. He is also short for his age and eventually his growth stalled and he began falling on the growth chart. Seeing the improvements that his brother had after going gluten free(the kid started growing and went from the 10th % in height and weight to the 50th%) in 6 months) I began to really worry about his growth. He also still had issues with constipation, daily stomach aches, gas/bloating and nausea. I had him scoped in Aug. 2010 just in case he was a seronegative celiac. His scope was negative also. I put him gluten free anyway to see how he would do. He has improved so much also. All his symptoms went away, he is regular now, has started to grow and he gained 6 lbs in 3 months. He did try gluten over the Christmas holiday and had some minor stomach aches. He decided that he wanted to stay gluten free because of all of the improvements he has seen. He doesn't have a diagnosis of celiac but gluten is not good for him either.
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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.


#7 kaity

 
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Posted 09 February 2012 - 10:47 AM

my son is three years old, and was diagnosed with celiac about a month ago, he was born 9 pounds, a very healthy baby, i breastfed him for 9 months before i introduced solids, when he was 9 months he weighed 23 pounds, he was so chubby, but when i introduced solids he started to lose weight, he never gained not even one pound for a little over two years till he finally gained a few pounds, imagine he was the same weight when he was nine months old and 2 year and nine months....
he had a list of symptoms:
1- always bloated, i used to laugh at his stomach he looked like a pregnant woman
2- diarrhea all the time, he never had a good bowelmovement in his whole life
3- very week hair
4- dark patches under his eyes
5- extremely skinny
6- sometimes he would eat like there is no tomorrow other day he would hardly eat, he lookes like those kids in poor countries that are starving, it was so sad to look at him
7- unexplained fevers all the time, the last time he was put in the hospital for eight days with an unexplained fever, they did a bunch of tests on him but they never found out what was wrong
8- always vomitting, sometimes it would be a couple months with out him throwing up, and other times he would throw up every day almost the same time every day....

u must be thinking that he had all these syptoms and the doctors never knew what was wrong with him??? i am the type of mother that cares about he children so much, i took my son to a lot of doctors, and where i live if i want to take my son to a doctor it costs a lot but i didnt care all i wanted was for him to get better, but every doctor would tell me a different thing, finally i took him to a doctor and told him that i think that he has celiac so he asked for tests and i told him the symptoms, but before i told him anything he looked at my son and he siad that it looks like celiac, i did the test and it was negative, but the doctor said that he was almost positive that he was celiac, i didnt take him off gluten i am waiting to do the endoscopy before i take him back off gluten....

do any of your celiac children have wek hair??? i heard that this may be a symptom as well..
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#8 agemme12

 
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Posted 10 February 2012 - 05:35 AM

my son is three years old, and was diagnosed with celiac about a month ago, he was born 9 pounds, a very healthy baby, i breastfed him for 9 months before i introduced solids, when he was 9 months he weighed 23 pounds, he was so chubby, but when i introduced solids he started to lose weight, he never gained not even one pound for a little over two years till he finally gained a few pounds, imagine he was the same weight when he was nine months old and 2 year and nine months....
he had a list of symptoms:
1- always bloated, i used to laugh at his stomach he looked like a pregnant woman
2- diarrhea all the time, he never had a good bowelmovement in his whole life
3- very week hair
4- dark patches under his eyes
5- extremely skinny
6- sometimes he would eat like there is no tomorrow other day he would hardly eat, he lookes like those kids in poor countries that are starving, it was so sad to look at him
7- unexplained fevers all the time, the last time he was put in the hospital for eight days with an unexplained fever, they did a bunch of tests on him but they never found out what was wrong
8- always vomitting, sometimes it would be a couple months with out him throwing up, and other times he would throw up every day almost the same time every day....

u must be thinking that he had all these syptoms and the doctors never knew what was wrong with him??? i am the type of mother that cares about he children so much, i took my son to a lot of doctors, and where i live if i want to take my son to a doctor it costs a lot but i didnt care all i wanted was for him to get better, but every doctor would tell me a different thing, finally i took him to a doctor and told him that i think that he has celiac so he asked for tests and i told him the symptoms, but before i told him anything he looked at my son and he siad that it looks like celiac, i did the test and it was negative, but the doctor said that he was almost positive that he was celiac, i didnt take him off gluten i am waiting to do the endoscopy before i take him back off gluten....

do any of your celiac children have wek hair??? i heard that this may be a symptom as well..



Wow. Im not sure what determines weak hair..i know their hair is very thin. That is how mine used to be. My hair has been falling out for a few years now which is awful. My son hasn't lost anything and my daughter a few strands here and there. She is bloated though and has been constipated since 4 weeks old. I breastfed till I had complications at 3 months then had to go to formula. She was still constipated, we gave her prunes, prune juice basically everything you tried. She is less than 5% and she is 2.5 years old in growth charts. She hasn't gained a pound is almost a year. aside of those 2 weeks i gave her gluten free stuff. We have a doctor appointment with her pedi on valentines day so im going to demand a test. She also bruises easily when she slips and falls.

How come kids get so many negative results back on the blood test??
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#9 samie

 
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Posted 10 February 2012 - 06:14 AM

My oldest daughter had constipation starting at one till diagnosed at 4 1/2. She also had a speech delay that has gotten better since being gluten-free six months and vitamin d defeincy.
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#10 CKC-Contributor

 
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Posted 10 February 2012 - 08:57 PM

Red flag on the comment "your kids do not need to be tested." Your are a 1st degree relative, your children most likely have the gene, she is showing possible symptoms!
The pediatrician is not up to speed on Celiac Disease or Non-Celiac Gluten Intolerant\Sensitive issues.
Ensure you get a full panel gold standard test done and read by a doctor who knows what to look for. If the test show your child has the gene, antibodies and the follow-on endoscopy show the damaged villi the disease has already been triggered! Start the diet before further damage is done. If your child does have the antibodies but not the gene and you find a Gluten free diet lowers the antibodies and the disconfort diminishes and grow is back on tract Non-Celiac Gluten Intolerance\Sensitivity is very likely the issue.
It is better to discover the damage early for either of the above Disease or Intolerance before more serious problems develope for example Leaky Gut, nutritional issues, and other Autoimmune Diseases.
I've got 5 kids who were diagnosed Celiacs during the same month but at different ages groups from preschool to high school. I wish we caught the older ones when they were in preschool. Life and medical bills would have been much less of a problem and the lifestyle change would have been easier on the older ones and us.
If your child has celiac disease or is Gluten intolerant, start preparing yourself for educating schools, caregivers, services providers, Doctors, family members, etc.. about this issues.
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#11 thegirlsmom

 
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Posted 16 February 2012 - 09:03 AM

I have a 5 year old who everytime I ran my fingers through her hair she would lose 2 to 5 hairs. This may not seem like much untill you run your fingers through over and over and it continues to fall out.I have alopecia areata which led me to my celiac dx so I know the hair thing is a sensitive subject for me.

I have taken all of my kids off gluten - it just seemed easier. Since then, my five year old doesn't lose her hair and she is staying dry during the day and night and she seems to have less D (I think she has a secondary issue with dairy) my 12 year old has grown 2 inches in 6 months When my kids get contaminated my 9 year old gets the worst gas you have ever smelled, is very emotional, and they will get really dark circles under their eyes. They look so sickly.
When given the option, none of my kids will eat pizza or cake at b-day parties because they don't want belly aches.

Looking back my 9 year old has been constipated since birth. When she was a newborn, She would only poo once a wee and then it was in such massive amounts that there was no way to contain it. When I asked the DR about it she just said, sometimes babies use up all of mommy's milk and have no extra. Looking back I wish I had pressed the issue a bit.


my son is three years old, and was diagnosed with celiac about a month ago, he was born 9 pounds, a very healthy baby, i breastfed him for 9 months before i introduced solids, when he was 9 months he weighed 23 pounds, he was so chubby, but when i introduced solids he started to lose weight, he never gained not even one pound for a little over two years till he finally gained a few pounds, imagine he was the same weight when he was nine months old and 2 year and nine months....
he had a list of symptoms:
1- always bloated, i used to laugh at his stomach he looked like a pregnant woman
2- diarrhea all the time, he never had a good bowelmovement in his whole life
3- very week hair
4- dark patches under his eyes
5- extremely skinny
6- sometimes he would eat like there is no tomorrow other day he would hardly eat, he lookes like those kids in poor countries that are starving, it was so sad to look at him
7- unexplained fevers all the time, the last time he was put in the hospital for eight days with an unexplained fever, they did a bunch of tests on him but they never found out what was wrong
8- always vomitting, sometimes it would be a couple months with out him throwing up, and other times he would throw up every day almost the same time every day....

u must be thinking that he had all these syptoms and the doctors never knew what was wrong with him??? i am the type of mother that cares about he children so much, i took my son to a lot of doctors, and where i live if i want to take my son to a doctor it costs a lot but i didnt care all i wanted was for him to get better, but every doctor would tell me a different thing, finally i took him to a doctor and told him that i think that he has celiac so he asked for tests and i told him the symptoms, but before i told him anything he looked at my son and he siad that it looks like celiac, i did the test and it was negative, but the doctor said that he was almost positive that he was celiac, i didnt take him off gluten i am waiting to do the endoscopy before i take him back off gluten....

do any of your celiac children have wek hair??? i heard that this may be a symptom as well..


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#12 Nannu

 
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Posted 21 February 2012 - 08:17 AM

Hi,

My 6 yr old was diagnosed a celiac with positive ttg levels and positive biopsy. There were no major symptoms other than occasional D, but our main issues with regards to her health were iron deficiency aneamia, low Vit D, poor growth in terms of height and weight. Since birth, she used to throw up a lot and i mean really a lot, but doctors dismissed saying its normal.

Then, she had severe D kind of symptoms 2yr onwards which was diagnosed as lactose intolerance. Then, i kept her off casein for 2 yrs and then reintroduced dairy and she was ok with it. All the above symptoms were resolved on gluten-free diet and she is much better and healthier now.

Thanks
Nannu
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#13 TJSpin

 
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Posted 21 February 2012 - 09:52 AM

6 year old just tested positive. No obvious intestinal issues what so ever.
  • Geographic tongue
  • tooth enamel defects
  • short stature
  • picky eater (like most 6 year olds)
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#14 GretaJane

 
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Posted 21 February 2012 - 10:31 AM

My son, 4 1/2 now, had chronic watery and frothy 'D' since he was a newborn, until I stopped eating gluten (when he was about a month old). His doctor had me do an elimination diet, because he was exclusively breastfed. First I stopped dairy for a week, no change, then stopped soy for a week, no change, and then stopped gluten and the diarrhea and vomiting stopped. He also projectile vomited a lot. It took me many mistakes to get the gluten free thing right. I did not know about Celiac disease and neither did his doctor. I didn't know how sensitive he was to the tiniest amounts. He got "D' and vomiting whenever I was careless, or his dad gave him french fries contaminated from frying in the same vat of oil as gluten foods. It was not until my mother-in-law came to visit when he was a couple of years old and I mentioned that he can't tolerate gluten that she said, "Oh yeah? I can't either, Celiac Disease runs in our family." Her brother and her were terribly ill for many many years before being diagnosed. When we went to visit her brother, my husband's uncle, and saw how emaciated and sickly he was, did I actually get super serious about cross-contamination with my own son. I had my son genetically tested, which showed he was at the highest risk, all the markers for Celiac. Of course, the blood tests were negative, as he's never really eaten gluten in his whole life. He did have Vit. D deficiency (even with supplements) and we've always struggled to keep his iron level up to the minimum level.

My nephew, 21 mo, has had a distended abdomen since he was a few months old, constipation, eczema, delayed-speech, short-stature, never ending runny nose since forever, and his mother refuses to consider he might have Celiac Disease (His pediatrician has even tried to talk to her about getting him tested!). I take care of him most of the time, so he is gluten-free here, so that is better.

Blood tests are not always reliable. And biopsies are not recommended by most pedi GIs, as they are invasive and often not enough damage has been done at this young age to show up anyway. Good luck. You can have the genetic test done on your children to see if they did get the genetic markers for it. If not, you can pretty much rule it out Celiac. If they do have the markers, they are at risk for Celiac. FOr the blood tests to be accurate, they must be eating gluten, some say the equivalent of 1-4 slices of bread per day for 6 weeks. Others say one month, and others say 3 months to be sure. There is no standard gluten challenge. If you can't bear to put your children through that, if they responded so well to being gluten-free. You can go gluten-free and wait until a test is available that does not require eating gluten.

Good luck!
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#15 TJSpin

 
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Posted 26 February 2012 - 07:16 PM

FOr the blood tests to be accurate, they must be eating gluten, some say the equivalent of 1-4 slices of bread per day for 6 weeks. Others say one month, and others say 3 months to be sure. There is no standard gluten challenge. If you can't bear to put your children through that, if they responded so well to being gluten-free. You can go gluten-free and wait until a test is available that does not require eating gluten.

Good luck!


True Health Labs (or Cyrex Labs, not sure who states it) state that for their blood test, "One must consume gluten containing food at least once two weeks prior to taking this test." This is so different from everything I have read. Is this for people eating gluten anyway?
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