11 replies to this topic

[sunburst]

Hope it's OK if I jump in and ask, did those of you with confirmed celiac babies noticed a gradual or sudden onset of symptoms? My daughter (father is celiac, I'm not) has previously had normal stools, sometimes mild constipation and occasional diarrhea, and then all of a sudden for the last 7 or 8 weeks has had loose stools every day, 2-5 times a day. She's only 18 months. She has also had recurrent yeast infections since she was a newborn and diaper rashes what feels like all the time and it's really bad now that she has loose stools.

Follow-on: She is scheduled for one of the blood tests next month; is the venipuncture for the blood sample bad? I'm dreading putting her through that.

[glutenannie]

Hope it's OK if I jump in and ask, did those of you with confirmed celiac babies noticed a gradual or sudden onset of symptoms? My daughter (father is celiac, I'm not) has previously had normal stools, sometimes mild constipation and occasional diarrhea, and then all of a sudden for the last 7 or 8 weeks has had loose stools every day, 2-5 times a day. She's only 18 months. She has also had recurrent yeast infections since she was a newborn and diaper rashes what feels like all the time and it's really bad now that she has loose stools.

Follow-on: She is scheduled for one of the blood tests next month; is the venipuncture for the blood sample bad? I'm dreading putting her through that.

I would not wait for tests! She does not 'need' G grains in her diet and loose stools are suggestive that nutrition is passing thru too quickly.

Celiac disease is a result of genetic sensitivity to G. She does not have to develop the celiac disease, to take action now.
Some things to consider- does your family have history of immune diseases? as these may also be linked to G sensitivity. is she weaned? has she had anti-biotics? Her gut may need healing and maybe even probiotics.

However being gluten free for a month may result as inconclusive tests...BUT if her stools normalise and presumably her mood alongside that, then what have you got to lose except doctor bills? Other 'allergies" can/will develop if the gut is disturbed.

It would be good to familarise yourself with current info on gluten sensitivity not just limit to celiac disease. Do a search for books and sites as it is much easier to nip in bud now. It is a myth that gluten-free diet is hard or nutritionally inferior.

[CaveMum]

The blood tests are not nice, but with a younger child, I found them easier to manage. My 9 month old was blood tested recently, by heel prick. He was pretty calm about it. My 3 year old has had two sets of blood tests for celiac antibodies, the first was a finger prick which took longer but was less traumatic, the second time they did venepuncture, and that was much faster but it was more upsetting for him. It was the same panel of tests each time.

Rather than taking pot-luck, I would call the blood collection centre beforehand to check that they have someone there who is good with kids.

[sunburst]

As it turns out, I called the doc and we're not waiting a month for the test; we're taking her in weekend if possible. My husband and I want to take her off gluten ASAP, but didn't want inconclusive test results if she was gluten-free beforehand. Her stool has gotten pale, sometimes green and her rash is so bad, it looks like stomach acids are irritating the skin.

She was weaned right before the diarrhea started two months ago but the amount of BM was inconsequential; maybe an ounce or two a day. Never been on oral antibiotics. Dad is celiac so gluten-free diet is not an obstacle for us; it would actually be a HUGE relief because we know how to deal with it already.

And yes, that is a GREAT idea; we'll definitely call the lab before we take her in to ensure we get a kid friendly phlebotomist!

[CaveMum]

I did wonder why the blood tests were delayed, but am glad to hear that you are getting them done sooner. What will your next move be after the blood test results are back? If you need to go for a biopsy, you will need to keep her on gluten until then, unfortunately

[sunburst]

We had scheduled the blood test for the same time as her next dr appt, but her symptoms weren't that bad at the time. I doubted it was gluten at first because the stool change happened SO suddenly, I figured it was a virus. When she got progressively worse, I called and asked to do the blood test immediately. I hear it only takes a couple of days to get the blood test results back so if we need to schedule a biopsy after that, hopefully they can get us in right away so we don't have to keep her on gluten.

[kareng]

Blood tests aren't always reliable in babies:


http://www.curecelia...ble-for-infants



http://www.celiaccen...aq.asp#accurate

"How accurate are the celiac blood tests?

The current diagnostic tests for celiac disease are very accurate, particularly when tTG and anti-endomysial antibodies are elevated. The isolated presence of anti-gliadin antibodies does not necessarily imply that the subject is affected by celiac disease, with the exception of children under the age of 2 in which tTG and EMA may not be present."

[sunburst]

Yes, I had read that. She has been eating wheat since she was maybe eight months old, so @ 10 months. I guess I figured that first, the blood test is less invasive than the biopsy, and second, if the blood test was positive for celiac, we could forgo the biopsy. Are there reasons to go ahead and do a biopsy of you have a positive blood result?

[Ollie's Mom]

If you get a positive blood test, and have a doctor willing to diagnose celiac on blood work and positive response to the diet alone, then I personally would forgo the biopsy for my child.

Some docs require a positive biopsy for diagnosis, but this is an old, unnecessary approach. There can be value in having an endoscopy (to rule out other conditions and obtain a baseline of villi condition prior to commencing a gluten-free diet). But, keep in mind that to get a positive biopsy, significant damage needs to be present. The fact that your child is so young means that severe damage may have not yet had time to occur, which would yield a negative result even if your child does in fact have celiac disease.

Testing (blood or biopsy) is notoriously difficult for young children (<2) with the high potential for a false negative.

Fwiw, I am self diagnosed, but saw the exact same symptoms in my first DS, including the pale green BMs and nasty rash. I just decided to take him off gluten without taking him to the doctor for tests (I have never had luck with doctors). His BMs normalized and the rash diasppeared within 2 weeks. We haven't looked back.

[sunburst]

Had the test over the Christmas holiday and it was 30 seconds of crying and yelling (her, not me) but only 30 seconds and she promptly forgot about it. Plebotomist was fantastic. Am thinking the ice cream dinner that followed might have been more for parents than her....

Don't have test results yet, but since eating gluten-free, her rash is gone, stools normalized and her mood seems a bit better. Just wanted to update and thank folks for the input. Even if test is inconclusive, we'll continue with the gluten-free diet and I'm sure as with most little kids, she will eventually get an inadvertent gluten-challenge at some point and we'll see how she reacts.

[Celiac Mindwarp]

Thank goodness it wasn't too bad. Parents definitely deserve ice cream on days like that! Great the diet is going well, good luck with results.

[sunburst]

Well, results of the panel were negative, but it looks like they only ran three tests? ttg antibodies (less than 1) iga serum (47) and gliadin (2). I guess even if it's celiac it's not surprising since she was only symptomatic for two months and she was off wheat for the week prior to the test. Have an appt with the pediatrician on Monday.