Possible Celiac Dd - Aged 19 Months

[HannahMommy]

Hello to all. My name is Heather, and my daughter Hannah has had loose, wet, runny, very frequent stools since before she was one year old. Because she has continued along her growth curve (20th percentile) the doctor's waited to see what would happen. The answer was nothing. We decided to put her onto soya formula at a year when cow's milk seemed to make things worse, but although that helped some, it wasn't wonderful. Our doctor continued to recommend that we expose her to dairy items such as yogourt, cheese, etc., but as of the end of July we completely cut out all dairy (again, our own initiative - we have to find out what's causing this). Although this change has improved things significantly (reduced bowel movements to 2 - 3 per day rather than 5+) the consistency and frequency still seems wrong. We spoke to a public health nurse last week who strongly advised going to a wheat and dairy free diet, and gave me a pamphlet on Celiac disease.

While we have begun this challenging task, I'm confused at the information I've been able to find out about the disease. Hannah doesn't seem to have very many of the symptoms - only the diarrhea/loose stools issue. So I'm looking for advice from other parents, etc., on whether this seems plausible, or whether I should push the doctors and nurses for more tests (yuck!) to determine another cause?

Any wisdom great or small would be appreciated. Btw, Hannah is my third child. My oldest is five, small for her age(5th percentile), but healthy; my middle child, Jeremiah, had trisomy 18 and passed away at three weeks old from an inoperable heart condition; and now there is Hannah. Life has never been simple, and I know some of our family think I am just being a worry wart about this. I'd love to be told not to worry about her from someone, but I want to make sure they know what they're talking about first!

Thanks to all;

Heather

[ILOVEOMC]

You are NOT being a worry wart. You are a concerned and caring parent who knows something is amiss. My suggestion would be to take the pamphlet you received from the nurse and show your child's doctor and asked to be tested for Celiac Disease or be given a referral to a GI specialist. If you go gluten free before testing is done then any test results will not be accurate. Hopefully others here will have help for you too. Good luck and my prayers are with you.

[Merika]

Hi,

Your mommy gut is telling you something is wrong and you should follow that instinct. Get your dd the test - it's an easy blood test, typically. There is a higher rate of false negatives in toddlers than in adults. So even if the result is negative, trying a gluten-free diet is worthwhile - but do it AFTER the tests (full celiac blood panel) and going gluten-free beforehand can mess up the results.

you do not need to show many (or even any) of the symtoms to be celiac. For myself, I was very sick for 12 years without typical celiac disease symtoms, and looking back to childhood, there were signs all the way along, but only hindsight points them out to me - I seemed basically healthy as a kid. Mind you, if I had been diagnosed as a kid, I wouldn't have gotten super super sick at age 19 and basically lost my 20s to lying on the couch (not lazyness, lol).

Celiac is a serious disease. Your dd, as you know, should not be having D several times a day. It could be celiac. It could be an allergy (to wheat, or soy or...), or something else.

Let us know how it goes,

Merika

[Kingschild]

Heather, I'm new around here and have just started my diagnosed daughter (she's 11) on the gluten-free diet, but I still wanted to offer my encouragment and support to you. Keep pressing the doctors. You are your daughter's only advocate.

The thing that is so awful about celiac disease is that most people don't get diagnosed until AFTER a lot of damage has been done to their intestines.

I really hope you get some answers for your daughter. She's so young to be having intestinal problems. Give her a hug from me.

Oh, and if your doctor won't get her tested call around. Someone will.

Mysti

[VydorScope]

Heather, my son is 25 months old and tested postive to celiac disease.

BEFORE YOU GO WHEAT FREE GET THE TEST.

The blood test is a nothing easy thing to do, but it will be negative, reguardless if you DD has celiac disease or not if you are already doing the diet.

If the celiac disease test is negative, go to an allegery doctor and test for food allergies to all the foods in her diet.

If she is postive for celiac disease, I would go dariy free till at least the stools go back to normal. Many ppl with celiac disease can not tolerate dairy till they heal. A 19month old will heal EXTREMLY fast. Might only take a week or 2.

The good news is that if it is celiac disease and you go gluten free, your child will have a very long happy healthy life. The bad news is that at 19 months old, your child will get gluten from tiem to time till she is old enough to understand to refuse bad foods. But since she is so young she will bounce back fairly fast form it.

Get the celiac disease Blood test. It takes a very short min, then its over. Small price to pay if its postive, and still good to know if its negative. Just do it before going wheat free, with your child so young she will bouce back FAST and realy impact teh test if you do not.

[e&j0304]

Heather,

I am kind of new here too and don't have anything to add to what everyone else has told you since you've already gotten great advice. I second what everyone said about getting tested. At least then you'll have something to go on. I'm not sure how much stock you can put in it if it's negative though since she's so young. My daughter's blood test came back negative so we just put her on the diet and have had great success. I know how hard it is to be wondering if there is something wrong with your child and what it could be. Also, I know how overwhelming this lifestyle change can seem (the gluten-free diet) and how you would really want to have some answers. I wish you the best of luck and I'll be thinking about your family.

[HannahMommy]

Thanks to everyone for their answers. Its actually really difficult because we are spending the year travelling Europe, and although we're covered for basic health care here in Britain, we won't be in the other places we are (and it takes a long time to get appointments here) so its very difficult to get doctor's appointments and blood tests, etc. My dd had some strawberries at lunch time and now has a VERY sore bottom from the results, so I'm pretty sure there are a lot of issues at play here. I will see if I can arrange for blood work to be done in the time we have here and I really appreciate having the knowledge that there IS a blood test for it (as I've not heard that up till now!!!) Thanks to everyone - I'll let you know how things go!

Heather

[Merika]

Hannah,

That you are in Europe is actually a big plus From what I hear, folks including doctors are more familiar with celiac. This is a good thing

Merika

[hilaryw]

My daughter (just diagnosed at age 4) did not have ANY of the classic symptoms. She was 50% on growth curve, and she had chronic CONSTIPATION. No diarreah. Had her tested for celiac disease and for cystic fibrosis. Thank goodness CF was negative; celiac disease was positive, it was a simple blood test, followed by a biopsy/endoscopy under general anesthesia. At first I was sad she had celiac. Now I am happy, b/c after one month on the diet, she is doing SOO Much better!! Still constipated, but has more energy, is happier. No distended belly, wants to EAT and eat a lot, etc. I tell everyone who has any GI issue at all to get the blood test. If 1 in 130 people have it, it's worth it to get a simple blood test. Had my 17 month old get the test too but it was inconclusive. I guess there is that risk w/ a toddler but I would still do it.