How Common Is Celiac Without Symptoms?

[Chaim9778]

My daughter is 20 months old, and hasn't really had any symptoms of celiac other than she is small and only weighs 22 pounds. Between 2 doctor's appointments 4 months apart she only gained one pound. She was healthy weight at birth 7lb 6 oz, and height-wise is around 50 percentile, but has always been underweight. She has a first cousin, who is 13, and recently diagnosed with celiac, and a second cousin and his father (her great uncle) also have celiac...so it runs on my husband's side of the family. I read an article in Parents magazine as well and one story in particular was of a child who hadn't been gaining weight properly. Some with celiac never show symptoms, so I was most worried that she may have it and not be showing the symptoms. I have switched her to a gluten free diet for almost 2 weeks now and she has gained a pound or pound and a half depending on the day, in less than two weeks, and she hasn't been eating any more than she did before. She has never had any food allergies that I've seen other than a minor diaper rash from eating grapes or pineapple and that I assume was from the acidity. If she really has celiac and I would rather her become accustomed to not eating gluten now, rather than several years later like her cousin. I've read about a cheek swab test on these forums and am going to look into that as an option. Have any of you who have a child with celiac been diagnosed and have not shown symptoms? I wonder how common that is?

[Mother of Jibril]

Welcome to the group!

Having a blood relative with celiac disease is the greatest risk factor. It would certainly be interesting to do a genetic test... it's just a cheek swab and you can do it anytime.

Lack of growth is a common symptom of celiac disease in a small child, but there might be other subtle things that just seem "normal" for her. For example... have you noticed any changes in her personality? Has her appetite increased? Does she have any strange rashes that are going away?

[happygirl]

According the medical literature, 'silent' or asymptomatic Celiacs are MORE common than those with what were considered "classic" symptoms.

There is a cheek swab for the genes: HLA DQ2 and HLA DQ8. However, about 30-40% of the American population has the gene. Only about 1% of the population is believed to have Celiac. So, just having the gene does not equal Celiac.

The gene test is not dependent on eating gluten/not eating gluten. However, the blood tests and biopsy, which are needed to diagnose Celiac, need to be done when the patient is consuming gluten.

Another point to keep in mind is that while many children are diagnosed with Celiac, testing at a young age increases the risk of false negatives - the testing isn't as strong for young children.

[Genna'smom]

Hi

I am still in the not sure I believe celiac disease but my now 2 1/2 old daughter decided to stop eating in April of 08 and was down to 19 lbs.... She is now up to 26 1/2 lbs since going gluten free but she is also fighting us tooth and nail about not wanting to eat and is gaining weight due to a feeding tube and her starting to eat some food. We are so worried about what will happen when we try to cut back on the feeding tube or cut it out and she did not have any of the normal symptoms of a celiac person. The only way we found out was that she had biopsy done due to look ing for issues with her acid reflux and it came back that she had early warning stages but her immune system was so messed up at the time I am still not 100% convinced so we will wait till she turn 3 and the try giving her any and all foods and then see what happens.

Good luck but this is a great place for advice.

[Chaim9778]

Welcome to the group!

Having a blood relative with celiac disease is the greatest risk factor. It would certainly be interesting to do a genetic test... it's just a cheek swab and you can do it anytime.

Lack of growth is a common symptom of celiac disease in a small child, but there might be other subtle things that just seem "normal" for her. For example... have you noticed any changes in her personality? Has her appetite increased? Does she have any strange rashes that are going away?

Hmm...her personality was a lot crankier from about 6 months on, before that she was never in a bad mood...I attributed that to beginning of teething but she also started oatmeal around 5 months of age, so that could have been part the moodiness too, if she does indeed have celiac. She has had eczema on her back which developed right when she turned a year old, and I thought that could be from the switch to cow's milk from breast milk, it has cleared up and is hardly noticeable except when it's really cold out, like the drier the air aggravates it a bit. She also had a rash/hives after she got her flu shot this year, it lasted 3 days, but she didn't have any rashes from it last year and received 2 doses since it was her first time, and this year the hives just from the one shot she did get. No rashes other than that. Her appetite would have days here and there where it would really pick up and my husband and I would think "Finally! She'll gain some weight now!" then it would taper off again. She never ate a lot of unhealthy foods, I'm big on lots of organic fruit and veggies, very limited sugar, etc...I am/was really big on whole grains, and fiber but may need to cut that out. Thanks for everyone's responses, very informative!

[mftnchn]

Gluten free is a healthy diet and ultimately you can make your own choice about it.

My thought is that you should seek out a sharp pediatrician and explain your discovery. Once she is gluten free no further testing for celiac is possible. Genetic testing only shows propensity, and you already know she likely has that due to family history.