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Just Curious...

sarahelizabeth

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sarahelizabeth Contributor
sarahelizabeth
Posted

How old was your child when they were diagnosed?? What symptoms did they have that led you to test?? And did they have many symptoms as a baby or did they start "suddenly" later on??

Just curious!! Thanks!!

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VydorScope Proficient
VydorScope
Posted
How old was your child when they were diagnosed?? What symptoms did they have that led you to test?? And did they have many symptoms as a baby or did they start "suddenly" later on??

Just curious!! Thanks!!

18 months old and dieing. Spitting up blood, shrinking, big belly, 5-7 diaper fulls of highly acidic diarrhea a day, etc. We tested for everything else till we learned about celiac disease. He had symptoms from a week after birth, but the went in to remission for a few months which delayed dx'ing/

Since going gluten-free he has rebounded and is now a very healthy 3.5 year old terror!

Guest GoofyG
Guest GoofyG
Posted
How old was your child when they were diagnosed?? What symptoms did they have that led you to test?? And did they have many symptoms as a baby or did they start "suddenly" later on??

Just curious!! Thanks!!

My children haven't been tested yet. I've just started hearing and reading about it this weekend. Both girls are titled Failure to thrive. The baby weighs 15lbs, and the 3 yr old weighs 24lbs. She put 4lbs on in a yr. It doesn't make since why they eat so much and don't put any weight on. We go back for weight checks all the time. I don't want anything wrong with them, but if there is I would like to catch early so it can be treated. My girls did fine on weight till they were 6months. They just stop growing and gaining. Gaining being the biggest part. It's right when they start food.

Nic Collaborator
Nic
Posted

My son was 4 when diagnosed. He projectile vomited through infancy, became constipated by 1 year and it escalated from there. At 4 could not poop at all and would be on the floor shaking and screaming for us to help him. They only ran the Celiac test after I mentioned my father had it too. I didn't think it was relavent because I knew my father had chronic diarrhea. I was ignorant about the disease and did not realize the wide range of symptoms.

Nicole

Guest Chrisbee
Guest Chrisbee
Posted

We haven't been diagnosed, but my eldest daughter (22) had projectile vomiting from birth. She had "mysterious" illnesses all through school and was diagnosed with all sorts of disorders and diseases, including mono, juvenile rheumatoid arthritis, excema, IBS, depression, asthma and polymyalgia. My eldest son (19) had diarrhea constantly during his growing up years and doctors would tell us he had parasites from well water (we lived on a military base?) or that he had IBS. He also has has many Asperger's symptoms, but was diagnosed with ADHD. My middle son (10) seems to have no symptoms, but my youngest son(6) was up crying with aching bones, muscle spasms, tummy aches, diarrhea and blistery rashes. He had stalled out on the growth charts when he was around six months old. His pediatrician told me it was my fault, that I wasn't providing him with proper nutrition, and when he was older, it was "growing pains and excema". He developed brown spots on his teeth at about nine months of age and his enamel is very weak. My youngest daughter stalled out as well and I switched her to formula at 11 months of age, and gave her nothing us but a little rice cereal. She went from 16 lbs. to a little over 20 lbs. very quickly and her dry skin improved some. She's just a little over a year old now.

My brother and my daughter both got tired of putting up with their symptoms and their doctors thought maybe they had an intolerance to iron. Both tested negative and my daughter was given another prescription for IBS. That's when I started thinking about our diet, that maybe it was something we were consuming that was causing our symptoms. I started researching our symptoms on the internet and found information on Celiac Disease. I took my youngest son in to see our new family doctor and asked him what he thought and explained how we've been from doctor to doctor. He said it very well could be Celiac Disease and advised us to try the diet and see if it helped. We've been gluten-free for a few weeks and feel so much better. My two eldest children haven't gone completely gluten-free, but my daughter is going to be tested. My six year old is also being tested, but we are still waiting to get an appointment with the gastroenterologist. I hope he's knowledgeable about Celiac Disease.

FeedIndy Contributor
FeedIndy
Posted

My youngest was 10 months old at diagnosis. She started dropping on the growth chart at about 4 months. Her doc tracked her weight carefully for awhile to see if it was just a normal dip since she didn't really have any other symptoms. At 9 months, he ordered blood work. When that came back negative we had already started the diet and saw improvements in things we didn't realize were issues-she had more energy and her mild constipation that we had never really noticed was gone. He ordered allergy testing at that point. That doc was an allergy/immunology specialist. After negative skin test she diagnosed celiac based on dietary response.

My middle child is 4 and has had her problems from about age 1, but it was all vague and never connected until it went away on a gluten free diet. My oldest is 9 and her problems began at about age 3, but it was again all vague and seemingly disconnected. Now they are all happy, healthy and gluten free!

Christine E Newbie
Christine E
Posted

My son was 13 months. He had problems since birth with spitting up, constipation, reflux, and what we thought were gas pains. Major sleep problems! He did not have a bowel movement on his own from 9-18 weeks, he was that constipated. Moved through every formula until got to Neocate, which helped some but not a lot. By one year, he could eat rice cereal and baby food pears. Everything else seemed to make him sick. His blood work and endoscopy were negative, so he was diagnosed because he tested for the gene marker, and the diet worked. He turned three yesterday, eats more than my 6 year old and weighs 30 lbs.

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2Boys4Me Enthusiast
2Boys4Me
Posted

My son was 5 years 9 months old when confirmed via bloodtest and biopsy.

He had (and still has) no outward symptoms, and the only reason it was discovered is during kindergarten he had started falling asleep at the supper table almost daily, so we took him to get his iron levels checked. They were very low (3 should have been at least 10) and he was put on 5mg liquid iron a day. After 30 days his level was at 4. Increased liquid iron to 10mg a day and in 5 months had blood tests for iron, calcium, thyroid, diabetes and celiac just to double check why he'd had trouble absorbing the iron.

Celiac came back positive and the biopsy confirmed it. Certains areas of the intestine were normal and others had "severe villous atrophy consistent with Celiac disease".

JennyC Enthusiast
JennyC
Posted

My son is 3 1/2 and we're still in the process of getting diagnosed. He had very high tTG levels and we have an appointment with a pediatric gastro. early next month. (Seriously considering declining the biopsy since by that time we will have been gluten-free for about a month.) My son always spit up as a baby and had many stinky diapers throughout the day, even though he was breast fed. When I stopped breast feeding him around 9 months old he began to slow down his growth. I kept waiting for his runny stools to stop as he grew, but they never did. I figured that he was allergic/intolerant to milk so I took him off dairy products. Symptoms got a little better, but never really went away, which I attributed to my occasional dairy slip ups. All of this time along with his diarrhea he's also had a distended abdomen, failure to thrive, eczema, small appetite, poor sleep habits, and yellow stools that float. He's been off of gluten for about two weeks now, and I have noticed many differences. (Although it is true that freshly diagnosed Celiacs are lactose intolerant, so if I do give him cheese without a lactaid he does have some problems.) The first thing that I noticed was that he has an appetite!!! That makes me so happy because I know that he has some catching up to do. He also is not as sleepy at night...not sure if I like that. :blink: He had also had some normal stools, but even when they are still a little funky they're much better than they were. From what I've read it takes time for the body to heal after being so badly damaged.

Good luck to everyone on their journey to heal their children.

Cam's Mom Contributor
Cam's Mom
Posted

My daughter was just shy of her 6th birthday when she was diagnosed with Type 1 diabetes. Our hospital does routine celiac screening in newly diagnosed diabetics on intake (3-5% of people with JD also have celiac disease). Her tTg levels were through the roof. We didn't really recognize any "classic" symptoms of Celiac in her but then when we start to have that 20/20 hind sight: she was "colicy" and screamed her first year of life and had some crazy looking diapers. By the time she started solid food she got very constipated and the big bloated belly. Her growth has always been great and she has always been in the 90th-100th percentiles for both height and weight. She had some joint pain that we just thought was growing pains. She had a lot of nasal congestion that we thought was allergies.

My latest theory is that the Celiac was brewing for several years (she had pretty intense villi damage on biopsy) and I think that because of the permiability of her intestine wall the antibodies got loose and attacked the pancreas which led to the diabetes which led to the diagnosis of the Celiac. This may be totally convoluted but it's my "Mom hunch" for some reason we feel better when we can come up with a "how did this happen scenario" - I guess in reality we'll never truly know, just genetics.

But I do worry when I see kids out there who have parents that are in denial and let their kids just pick the cheese off the pizza or eat the apples out of the pie thinking it won't hurt them as long as they are not projectile vomiting or having chronic diarhea then what's the harm. If these kids posess the gene for type 1 diabetes and the pancreas attack begins they are playing with fire - JD and celiac disease are a tough combo!

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