How Did You Find Out?

[doulagrl]

Hello Everyone,

I was just wondering how you found out your child had celiac disease. I'm new to this group and am awaiting testing for myself but now am strongly suspecting my 2.5yr old son has celiac disease as well. He suffered from terrible gas and bloating from birth along with ezcma which was resolved when I eliminated everything from my diet (I was breastfeeding) except unseasoned grilled meat, carrots, peas and rice cereal and milk. He was always right on schedule or a little above on the growth charts until I started him on solid food and began adding things back into my own diet. By 12months he was classed as underweight and is also milk intolerant and struggles with anemia. He has had a major growth spurt about 4months ago but is still small for his age in both height and weight. We just thought that his size and anemia were hereditary because I had the same problems as a child but I'm now suspecting what was hereditary is Celiacs. The pediatrician we had seemed unconcerned because he was reaching his other developmental milestones and was active. He also always has loose stools and food goes through him very quickly, for instance corn will show up in his stools about 6 hours after eating it. I was just wondering how everyone else arrived at the diagnosis of celiac disease with their children and what my next step should be. I'm living in England and because we have a government health system I'm suspecting it will be very difficult to get any type of testing done though I am meeting with a doctor about myself in two weeks. Has anyone simply chosen to go gluten free for their child based strictly on symptoms without a diagnosis through bloodwork or colonoscopy? Thanks for any advice.

Melody

[Nic]

Hi, no one even concidered Celiac for my son as he was always ahead of the milestones and over the 90th percentile for height and weight. He was severely constipated, distended belly, dark circles, hyperactive, and very emotional. My father has Celiac but his symptom was major diarrhea and therefore, very, very thin. Around the time my son was 4 he was getting worse and worse so we were seeing a GI who could not figure out what the problem was. I finally asked if it was important for him to know my father had Celiac (duh in hind sight) and bingo, that was what it was. We did do the blood and the endoscopy but there are plenty of people here who believe the diet is proof enough. Especially if you get dianosed Celiac. My younger son is now having symptoms and I am going to have him tested through Enterolab. I will not be doing a biopsy for him because what is the point? His brother and grandfather are Celiac and if he is intolerant to gluten why look and farther.

Nicole

[Kibbie]

I had never heard of celiac until my Pediatric GI called me up and told me she tested positive for it. She was tested for a whole bunch of other stuff because of family history and she said "and we will run a bunch of others just to rule out anything else" It was in the "bunch of other" tests. My dd's symptoms were atypical... she just vomited 1-2 times a day every day for over a month. No one suspected it at all. The only reason they ran the Celiac test is because I mentioned that my grandma had Lupus before she passed away. We were lucky she started throwing up in Early August and we had her completely gluten free and a confirmed diagnosis of Celiac by late September.

[nikki-uk]

As a baby ( even on just milk ) my son used to have terrible diarrhoea, but as my son had a heart condition and subsequent surgeries I thought it was a side effect of all the meds he was on.

When solids were introduced his stools were (if I say so myself!) horrific!!

All the docs just said there was nothing wrong (stool tests were run) and it was just his digestion getting used to food.

Eventually the foul hideous smelly stools got ( a bit ) better and I think we just got used to him being a frequent visitor to the toilet!

All his height and weight measures were within range - so we weren't overly worried.

Fast forward around 12 years and my husband was diagnosed with celiac disease after being extremely ill for 5 yrs.

When I started researching it I realised it was genetic - and it was like a lightbulb went on in my head about my son's symptoms.

After positive bloods, and a positive biopsy my son was finally diagnosed with celiac disease at age 13 !!! (Got there in the end!)

I must admit, before my husband was diagnosed I had never heard of celiac disease - now I could right a book about it!!

[Twin mom]

My daughter now 4 was diagnosed a year ago. Her only completely obvious symptom was a bloated belly, particularly after meals (not necessarily gluten-containing ones). She also seemed kind of tired. When we decided to do a blood draw for some allergy testing (all of which turned out to be negative) I requested the celiac screen. My doctor almost fainted when it came back positive.

We found out then that she was anemic and zinc deficient. She was short, but we had attributed that to parental height and sleep apnea.

Honestly, I wouldn't have had her tested if we weren't already doing a draw and we had already covered our insurance deductible.

I personally believe everyone in this country should be screened for this disease- the cure is easy, the symptoms are highly varied and the dramatic improvement in quality of life for celiacs on the diet amazing.

Write a letter to your congressman and tell them so!

[2Boys4Me]

Ty was diagnosed at age 5. We had his hemoglobin tested at his yearly checkup because he'd been falling asleep at the supper table and we thought that was a bit peculiar. His iron was very low, he was put on 5mg liquid iron daily and a month later the level had not gone up. He then took 10mg liquid iron and after 5 months on that, he was tested for iron, calcium, thyroid, diabetes, celiac and something else. Celiac came back positive. He had a biopsy that came back positive. I believe the remarks were something like: some normal villi, some severely blunted villi consistent with celiac disease.

Nikki-UK, I have the feeling that around here they have started to routinely test children with Down Syndrome for celiac. I might be wrong, but I'm sure the Mom of a girl with Down in Ty's class said that. Her daughter has been tested several times.

[doulagrl]

Thanks everyone who has responded so far

Mel

[nikki-uk]

Nikki-UK, I have the feeling that around here they have started to routinely test children with Down Syndrome for celiac. I might be wrong, but I'm sure the Mom of a girl with Down in Ty's class said that. Her daughter has been tested several times.

That's a great idea and I wish that were so -then my son might have got dx much earlier.

Although in the UK Downs kids are routinely screened for Thyroid disease not Coeliac?

If you add to the fact that as it turned out my son's Dad also had celiac disease he was a definite candidate for screening.