How You Found Out Your Child Had Celiac

[kimis]

Hello everyone! I found out 5 months ago I had celiac. So far I am the only person in my family with this disease. My daughter is "normal" , so far. I wanted to know how some of you parents found out your child has celiac. You know, symptoms, stories, whatever...Thanks

[Amyleigh0007]

My son was not growing. He was 8 and weighed 41 pounds. He also was sick all the time and had a hard time getting over illnesses. He had terrible leg cramps at night. He was constipated. He had a BM about once a week. He was very, very picky with his food and only ate foods loaded with gluten (chicken nuggets, mac and cheese, crackers, cookies, etc.).

[ptkds]

My 1st dd that was diagnosed constantly had diarrhea (even after 2 bananas a day!) and a "diaper rash" that wouldn't go away with any meds. She was also pretty bloated. I took her off dairy thinking that was the problem, but it didn't help. When I was looking up lactose intolerance, Celiac kept popping up, so I asked her pedi about it and she agreed to test her. The results were positive.

So I had my 2 older dd's tested. DD#2 was positive, even though she really didn't have any symptoms that I had noticed. DD#1 was negative. DD#4 was tested as an infant, but it was negative. when she got a little older (14 months) the GI did an endoscope and found ulcers and some inflammation in the small intestines. Her tests were negative, but he said she most likely had celiac but was too young to test positive. A baby wasn't supposed to have ulcers (neg. for H. pylori), so he decided it must be from gluten.

I was also tested at the same time as my older dd's, and I was positive. It won't hurt (at least for long!!) to have your dd tested for Celiac. It is genetic, and she could easily be a "silent" celiac.

[Tim V]

I just posted my story. Check it out.

Thanks!

Tim V.

[dilettantesteph]

My son (10) started throwing up, like 10 times a day, pretty much out of the blue. The doctor suggested GERD and celiac. I read about celiac and figured it was GERD and we tried all sorts of medications as well as an acid free diet. He could hardly eat anything. Much worse than the gluten free diet.. When I read about celiac I thought that's me, not my son and eventually I went gluten free and WOW what a difference. My son still wasn't responding much to the GERD treatments so he tried out the gluten free diet and WOW. He is in great health, can eat anything except gluten, gained about 30 lbs. All sorts of other symptoms that he had had for years went away. Reflux, vomiting, excema, irritability, nose bleeds, red ears (?), diarrhea, vision problems, Unfortunately no testing. He did a gluten challenge to try for testing and lasted 3 days before getting too sick to continue, and was sick for 2 months after that. The doctor is great. Lots of experience with celiac. Frankly, I don't care if it is gluten intolerance or celiac. He knows that if he eats gluten he gets really sick.

[Rondar2001]

My daughters only tipoff was stomach aches. Her pediatrician was sure it was just growing pains until we brought her in because she was waking up in the night with pain. He ran the celiac test pretty sure it would come back negative but lo and behold, it was definitely positve. He was suprised because she had no nutritional deficiencies and was in the 75 percentile for height and weight. He also said that it has only been about the past two years that he has even been considering celiac disease in his patients.

Looking back, she had signs before this - bloated tummy, lots of dental work, bags under her eyes, and a year where she had to take an iron supplement for unexplained anemia.

[shan]

My oldest, who is the celiac in our home, always had D. As it was our first, i didn't know that it was not supposed to be like that... Then she started losing weight and we nearly had her taken away coz we obviously didn't know how to feed her! When she was 21 months the dr (a new one!) did a bunch of tests and suggested celiac and going to a gastro. She was diagnosed at 24.5 months weighing just 18lbs and fitting into clothes for a 9 month old... 3 months later she had grown so much she was even tall for her age group!!! Miracles do happen!!!

[sugarsue]

  kimis said:

Hello everyone! I found out 5 months ago I had celiac. So far I am the only person in my family with this disease. My daughter is "normal" , so far. I wanted to know how some of you parents found out your child has celiac. You know, symptoms, stories, whatever...Thanks

Hi, Since my daughter was 3 I was searching for answers. She was first diagnosed with sensory processing disorder. She had strange behavior (impulsive, couldn't wind down to go to sleep, silent temper tantrums). She had constipation issues first that turned to diarrhea issues a few years later. When she was 4 she was diagnosed with epilepsy. When she was 5 I found out she was lacking in many of her vitamins, amino acids, minerals. She was small for her age, didn't have any energy or stamina, daily stomach pain.

I convinced her neurologist to do a celiac panel. It came back with elevated IgG and low normal Total IgA.

At this time she has been diagnosed with non-celiac gluten intolerance. She may have celiac but we don't have a diagnosis and have gone gluten free. She is doing much better!

How are you feeling after going gluten-free?

[ryebaby0]

When my son was 10, he developed "intractable D" (basically, severe D that doesn't get better), severe joint swelling, and lost 15% of his body weight. In retrospect, he was always very small, slow-growing, with digestive issues and lots of gagging over food, especially (wait for it) cereal..

We were all tested after his dx. My other son and I were clear negatives, my husband's doctor said he was "mostly negative" so we asked to see the test results. His tTg was "borderline" but my son's GI said there is no such thing as "borderline" so even though he had no raging symptoms, my DH went gluten-free. The change in his health was astounding -- energy, joint pain, GI symptoms, weight gain for the FIRST time in his adult life (he's a very skinny guy), brain fog/memory issues lifted. My husband's grampa died of bone cancer, his gma has IBS (we suspect a misdiagnosis, but at 93, she just doesn't care to know at this point). His parents were tested but were negative; his brother refused testing.

[cruelshoes]

We screened all of our kids as first degree relatives immediately after I was diagnosed. My son was positive. He had no outward symptoms. However, his biopsy and bloodwork were nearly as bad as mine were. I was near death and getting fed through an IV, and he seemed fine. But he was well on his way to being a very sick little boy. When we told him he had it was when he said "how long do I have to get fed through the tube?" It made my heart ache when he said that. But I told him that since we had caught his celiac before it got really bad, he wouldn't have to get really sick like I did.

My son's diagnosis has demonstrated to me how important it is to screen all first degree relatives - regardless of symptoms. I feel like we really dodged a bullet.

[gfgang]

We had found out that our son (4yrs old) had celiac disease in May of this year.. He was under the 50th percentile. He gained no weight and did not grow an inch in one year.. I had told the doctor that his BM were always bad , smelly and irregular. ( this was before his check-up .) but the doctor just thought it was a bug going around. Finally when he went to get his shots this year they noticed the problemand sent us to a few specialist and he was diagnosed. Before we went gluten-free his stomach was always hurting and was so huge it looked painful. Now after 6 months being gluten-free he has lost his stomach his BM are normal, hes gained 2 lbs and grew a 1/2in .. that may not sound like much, but in the gluten-free world it is something.. Im still pretty new to this Celiac Disease, but it gets easier as you go. The whole family is now gluten-free in support of our son, and its going great. I wish you the best of luck...

[Kibbie]

Around 18 months old my daughter vomited one night for no reason... I attributed it to over heating and moved on. Several days later it happened again, and then a few days after that it happened one more time. So I called her Dr. and got her in right away. We decided it was post nasal drainage causing the problem and put her on meds for allergies.

It happened the night I gave her the meds and call it my mom instinct but I knew something was wrong with her tummy... so I took her off all dairy instantly and gave her a part of a tums. That night their was no vomit so I called the Dr and told her about my experiment and she immediately referred us to a pediatric GI Dr.

We she was dairy free until we saw the GI Dr. and though she was vomiting every night and occasionally during the day by this time (from the first vomit to the day we had the biopsy done it gradually got to be more vomit more often) The GI ran blood work and scheduled a bunch of tests (MRI to rule out brain tumor, upper GI, and another test which I dont remember).

We got the positive bloodwork bad the day before her MRI so we were able to cancel that and move on from there. It was about a month from the very first vomit to the positive blood work.... when she went in for her biopsy her tummy was clearly a "celiac tummy" round as a ball and rock hard. She had also lost a lot of weight (going from the 98% to the 50% in a month)

So basically her only symptom was vomiting.... now if she gets "trace amounts" we get a round to tummy cramps and nasty poop but if she gets a lot of gluten she still vomits it all back up... and is a real pain in my bum for the next day or two (she's 3.5 now)

[beks4grls]

Can anyone explain other symptoms their children were having? My 5 yr. old daughter has been having a fever off and on again for the past 6 weeks. Mainly just on the weekends and then by Sunday she would be fine again. She would be fine during the week and then towards the end of the week she would start to get a fever and feel tired. It was the wierdest thing! She had no other symptoms and was in good spirits and playful. She also ate and drank normally. The weekend before last the fever started again and this time she looked really pale and had a runny nose so I took her in to our pediatrician on Monday. The night before I started thinking about this past year and how susceptible she has been to colds. She is tall but very thin and small boned but eats really well and quite often but has not gained any weight this year. Earlier this summer I started noticing her bm's although regular and daily, were really long and bulky for someone her size and recently (and this sounds odd I know) but she has needed to spit just about every time she has a bm. (??) After taking a urine sample and some blood the pediatrician said she had a UTI and was slightly anemic. She wanted to run a ferritin (sp) blood test and I suggested they do the full celiac panel. (I had that done two years ago with negative results but had so many symptoms I went gluten free which left no doubt that I am gluten intolerant. The gastro I went to was horrible so I am not sure the tests were done accurately.)

The pediatrician agreed to have it done but said she really didn't seem to have "typical" symptoms to suspect celiac like stomach bloating, stomach pain, running stools or constipation. (Now I KNOW from my experience symptoms can be different for everyone so I tried not to get too annoyed at this comment.) I described her stools and pointed to the lack of weight gain. She agreed and we had the test done on Monday. We should know something this week. I was curious if her symptoms sound familiar. I also suspect my 10 year old daughter may have symptons also but her symptons are different. (extreme eczema, irritablity, painful headaches, extremly sensitive shoulder and neck pain and unexplained weight gain in the past year.) I think my family thinks I am paranoid!

Thanks for any input or help!

[kimis]

Thank you everyone for all your stories...I know how bad things were and still are for me..I can't imagine a child having to go through all these things and then having to ajust to a new diet. I hope all of your children are doing wonderful!! My daughter has no symptoms as of now, but I will keep watching her and educating her just in case. It is amazing how much symptoms can change from person to person....it's also kind of scary when the GIs of today seem to know less about Celiac than we do.

[cymrudenver]

After I was was diagnosed we had our three children tested, only our oldest came back positive, her only sign was being short and thin, no GI symptoms at all. Now if she eats gluten accidentally she has severe stomach cramps and vomiting. She's grown 2 inches since going gluten-free in July.

[bear6954]

  beks4grls said:

Can anyone explain other symptoms their children were having? My 5 yr. old daughter has been having a fever off and on again for the past 6 weeks. Mainly just on the weekends and then by Sunday she would be fine again. She would be fine during the week and then towards the end of the week she would start to get a fever and feel tired. It was the wierdest thing! She had no other symptoms and was in good spirits and playful. She also ate and drank normally. The weekend before last the fever started again and this time she looked really pale and had a runny nose so I took her in to our pediatrician on Monday. The night before I started thinking about this past year and how susceptible she has been to colds. She is tall but very thin and small boned but eats really well and quite often but has not gained any weight this year. Earlier this summer I started noticing her bm's although regular and daily, were really long and bulky for someone her size and recently (and this sounds odd I know) but she has needed to spit just about every time she has a bm. (??) After taking a urine sample and some blood the pediatrician said she had a UTI and was slightly anemic. She wanted to run a ferritin (sp) blood test and I suggested they do the full celiac panel. (I had that done two years ago with negative results but had so many symptoms I went gluten free which left no doubt that I am gluten intolerant. The gastro I went to was horrible so I am not sure the tests were done accurately.)

The pediatrician agreed to have it done but said she really didn't seem to have "typical" symptoms to suspect celiac like stomach bloating, stomach pain, running stools or constipation. (Now I KNOW from my experience symptoms can be different for everyone so I tried not to get too annoyed at this comment.) I described her stools and pointed to the lack of weight gain. She agreed and we had the test done on Monday. We should know something this week. I was curious if her symptoms sound familiar. I also suspect my 10 year old daughter may have symptons also but her symptons are different. (extreme eczema, irritablity, painful headaches, extremly sensitive shoulder and neck pain and unexplained weight gain in the past year.) I think my family thinks I am paranoid!

Thanks for any input or help!

Before my son was diagnosed he would have night fevers almost every night. He would also get fevers at other times, that would last maybe two days with no other symptoms. About the time we were getting tested for celiacs disease, they did a liver panel and found that his liver was not functioning right. This was before going gluten free. After about 2 months on gluten free his liver began to get better and the fevers went away.

[WendyG]

My oldest of three had bad tummy aches, I wanted to get her tested, since I have celiac. My Dr said why don't you test them all for a baseline. I did and my other daughter came back positive and she had no symptoms. Of my three only one has tested positive, I will keep watch on the other two.

good luck

[Julia's mom]

  beks4grls said:

Can anyone explain other symptoms their children were having? My 5 yr. old daughter has been having a fever off and on again for the past 6 weeks. Mainly just on the weekends and then by Sunday she would be fine again. She would be fine during the week and then towards the end of the week she would start to get a fever and feel tired. It was the wierdest thing! She had no other symptoms and was in good spirits and playful. She also ate and drank normally. The weekend before last the fever started again and this time she looked really pale and had a runny nose so I took her in to our pediatrician on Monday. The night before I started thinking about this past year and how susceptible she has been to colds. She is tall but very thin and small boned but eats really well and quite often but has not gained any weight this year. Earlier this summer I started noticing her bm's although regular and daily, were really long and bulky for someone her size and recently (and this sounds odd I know) but she has needed to spit just about every time she has a bm. (??) After taking a urine sample and some blood the pediatrician said she had a UTI and was slightly anemic. She wanted to run a ferritin (sp) blood test and I suggested they do the full celiac panel. (I had that done two years ago with negative results but had so many symptoms I went gluten free which left no doubt that I am gluten intolerant. The gastro I went to was horrible so I am not sure the tests were done accurately.)

The pediatrician agreed to have it done but said she really didn't seem to have "typical" symptoms to suspect celiac like stomach bloating, stomach pain, running stools or constipation. (Now I KNOW from my experience symptoms can be different for everyone so I tried not to get too annoyed at this comment.) I described her stools and pointed to the lack of weight gain. She agreed and we had the test done on Monday. We should know something this week. I was curious if her symptoms sound familiar. I also suspect my 10 year old daughter may have symptons also but her symptons are different. (extreme eczema, irritablity, painful headaches, extremly sensitive shoulder and neck pain and unexplained weight gain in the past year.) I think my family thinks I am paranoid!

Thanks for any input or help!

You 5-year old sounds exactly like Julia who is also five and diagnosed 2 months ago. Julia complained of tummy aches for about a year until they got severe one week and I took her to the doctor. In addition she would get hot, sweaty and pale. We know now that those were her Celiac symptoms because of her malabsorption. Please have your child check immediately. Don't wait. Julia never complained about the pain until I started asking very direct questions. In addition, don't fool yourself that you don't have Celiac. My husband was gluten intolerant until we got a proper diagnosis after Julia's.

This week hasn't been very good for Julia, however Julia's response to a gluten-free diet has been amazing.