Confused - Long (My Apologies In Advance)

[Momof2xy&2xx]

Hello! I have a complex situation, and I am starting to do some research, and stumbled upon this site.

My daughter, was born 1/2010, full term, weighing in at 5 pounds, 0 oz/19.25" long - she was diagnosed with IUGR (Intrauterine growth restriction) and poor interval growth and I was induced at 37.5 weeks because of it. She did fine, other than being extremely small, and came home with me after a brief stint in the nicu to be sure she transitioned well because of her size. She grew well, and was up on the charts in the 25th percentile by 3 months.

She had a significant hypotonia (floppy muscles) issue that was evaluated (it was evaluated at 2 months, and a big workup was started at 6 months) by a neurologist. She started meeting milestones at about 8 months, and is now walking (she started walking *on time*). Her testing all came back negative (good MRI, good EEG, no turners, praeder willi, normal thyroid, cbc, normal number of chromosomes, metabolic testing came back wierd for a long chain fatty acid metabolism disorder, but the repeat was normal), and we were released back to our normal pedi.

At about 6 months, she stopped growing. She is now 14.5 months old. Since July last year (at her 6 month visit), she has gained about a pound and a half, and grown a bit over an inch in height. She has not grown at all since late January. Obviously, this isn't normal for the time frame between 6 months and 14 months, and she has fallen completely off the growth charts for height and weight - she now weighs 16 pounds and is 26 5/8" long - about the average size of a 6 month old. She has the proportions of a child her age, but is just super small/short. If you put her into a room with no size indicators, she'd look like a normal toddler (until you see her next to a child her own age, or furniture that would indicate size etc). She has been labeled "failure to thrive" since her 9 month pedi visit, when we were told to 'add fat to *everything* she eats' which we have done. Her doc is doing a workup to check for a myriad of things, celiac included.

Yesterday, we got the results of her fecal fat back, and they were elevated. The doc sent some sort of a blood test for celiac (along with the other testing she ordered) off last Wednesday, and said we should get the results from it this week coming up. The doc said that the increased fecal fat could strongly indicate celiac. I can't figure out how the picture I'm getting from celiac fits at all with her though. She was a constipated baby, refluxy, but no symptoms and off meds for quite a while. She normally poops 1-2x per day now (sometimes three, but NORMALLY, she'll poop in the evening every night, and then have a few other random stools in the mornings, or a second night one a couple of times per week), and it is normally soft (appropriate for a baby who eats solids, but a good portion of her diet is still breastmilk), but NOT diarrhea/loose. She is a terrible sleeper (never more than 6h straight, usually wakes 2-3x per night to eat, and is *actually* hungry). She eats more than my 3 year old does (seriously). She never stops eating. I've never seen a kid do this before. Besides that, she's a normal (but very, very short) 14 month old. She is developmentally appropriate, responds when you talk, understands, etc- she's just super tiny.

So, after my long diatribe, does this picture 'fit' in the celiac picture? Honestly, the doc did it more as a 'just in case because I don't know what else to think' sort of thing, from what I understand. Does the elevated fecal fat have other causes besides celiac? This is the direction she pointed us in after that test, and we are pending the blood test results now.

Thanks guys - sorry for the long, rambly post.

[tarnalberry]

Yes, the celiac picture fits. You may have been reading either out of date or excessively "concise" material - constipation is a common symptom as well. Eating a lot (especially without gaining weight) is also a sign (because she's not digesting food, she's hungry a lot!). Reflux is also a common symptom of food intolerances. Really, it fits fairly well, including the IUGR - ESPECIALLY if you happen to be celiac (possibly a silent celiac)?

Good luck on further testing, and I would highly encourage you to try her (and possibly yourself) on a STRICTLY gluten free diet for a month or two to see if anything changes.

[anna34]

Much of your story resembles what I went through with my daughter. She was born at 34 weeks, NICU stay, reflux, always wanting to nurse (every 1-2 hours for 6 months - exhausting). While she was never labelled "failure to thrive" she did go through periods where she dropped off the growth chart and the doctor was concerned. She had low iron despite supplementation, poor tooth enamel, pain in her abdomen, constipation and diarrhea. It wasn't until last month (at the age of 5) that she was diagnosed with Celiac.

I was speaking with a Paediatric G.I. recently who said that some studies are suggesting there is a connection between the timing of the first introduction of wheat into a baby's diet and whether or not the celiac gene will be triggered. He also said that "first foods" such as rice cereal are different than the rice cereal we had as babies because some companies are adding wheat to the rice cereal. Apparently there is a study being done out of Denver that is tracking 1000 babies from birth on up and they're finding that rather than 1 in 133 kids having celiac, it's now more like 5 and that part of it might be from wheat added to baby cereals.

Looking back, all of my daughter's health issues can be attributed to Celiac. Interestingly, her tummy first started getting big when we started feeding her baby cereal. We were happy that she seemed to be gaining weight, but the reality may have been that it was a reaction to the gluten causing her distended belly. The good news is that after only a few weeks on the diet, her pain is gone and she has more energy.

Good luck as you continue forward.

[Momof2xy&2xx]

Thank you so much for your responses! This weekend, Violet got some sort of a stomach 'thing' and has been vomiting (but strangely, only at night, and she is requesting food/playing normally, though she is tired today - i think it was from dehydration, as once we got her back to hydrated @ the doc today, she seems much better). While we were at the pedi, we talked w/ two docs - the one who saw her today (same team/different doc than her usual) AND her normal pedi. The doc who saw her today strongly suspects celiac at this point, but wants to rule out a few other things (cystic fibrosis, pancreatic insufficiency) so they are sending off *more* lab work and referring her to the gastroenterologist. This sucks. Poor baby - between the workup and whatever this bug is (it seems so odd for her to only be vomiting at night, but she vomits until she vomits bile and dry heaves - poor kiddo ) she's pretty miserable right now. I hope whatever this is is diagnosed quickly so we can treat it.

Violet has done (baby food wise) what all of my older kids have done - when she is old enough to EAT it, she can have it. She never took baby food from a spoon, rather, she started off with soft banana, avocado, cheerios (wheat!) and the like, and progressed to other easy to eat finger foods and now eats (literally) everything we do. The only thing she will allow us to spoon feed her is the fortified oatmeal we give her in the mornings (this is where we dump in a lot of the fats/calories the pedi wants her to have extra because she isn't growing well). She has never really liked anything toooo carby (except cheerios) - she's the first of my kids to turn down bread, crackers, goldfish etc. We live in Germany, so all of the wonderful bakeries around make it easy for us to get fresh bread with dinner almost nightly - guess that will have to stop, huh?

As to me - I have had gut issues, but nothing severe enough to go to the doc about - more just annoying than anything. However, the suspected cause of her IUGR was my extremely severe hyperemesis - I did not gain any weight(rather, I lost quite a bit) at all during my pregnancy, and was admitted several times for extreme dehydration. The running theory is that I was so malnourished that there just wasn't anything for either one of us to 'eat'.

If this does pan out to be celiac, how exactly do we do this? I have *no* clue how to go about eliminating gluten. Is this something that our entire family would need to avoid? Is it, like nut allergies, where cross contamination causes an issue? What about if, say, a sibling was eating xyz food w/ gluten and vi doesn't eat it but is around it - woudl that cause issues? (I'm sorry -I know I sound stupid, but I really am totally clueless. I'd never even HEARD of this until her doc mentioned it as a possible cause for her growth failure).

[mushroom]

I am sorry that wee Violet is having such problems. Yes, unfortunately if it does turn out to be celiac you will have quite an adjustment to make in your household. Cross-contamination is a big issue with gluten because it is so sticky and sticks to everything, like wood and plastic spoons and cutting boards, colanders, scratched non-stick pans. Flour is so fine and particles suspend in the air and then eventually settle on everything in the kitchen including the counters and other food. Crumbs of gluten settle in the toaster and can't be removed, and they also sneak into all nooks and crannies. I don't know how old your other children are, but if they are under 4 it is going to be hard to train them not to leave trails of crumbs everywhere, not to leave sticky gluten fingerprints everywhere or give Violet big gluteny kisses. Especially if there is more than one family member affected, families often find it easiest to take the whole household gluten free to avoid this issue.

If Violet needs to be gluten free (and it sounds like she probably does, celiac or not) you will find lots of useful information at celiac.com and on these boards for deglutenizing and keeping her gluten free, and lots of helpful folk to give advice and assistance. I do think that you should be tested also, since celiac is genetic and she will have inherited the gene from either you or her father (or maybe both). Good luck on getting some definitive results.

[anna34]

Thank you so much for your responses! This weekend, Violet got some sort of a stomach 'thing' and has been vomiting (but strangely, only at night, and she is requesting food/playing normally, though she is tired today - i think it was from dehydration, as once we got her back to hydrated @ the doc today, she seems much better). While we were at the pedi, we talked w/ two docs - the one who saw her today (same team/different doc than her usual) AND her normal pedi. The doc who saw her today strongly suspects celiac at this point, but wants to rule out a few other things (cystic fibrosis, pancreatic insufficiency) so they are sending off *more* lab work and referring her to the gastroenterologist. This sucks. Poor baby - between the workup and whatever this bug is (it seems so odd for her to only be vomiting at night, but she vomits until she vomits bile and dry heaves - poor kiddo ) she's pretty miserable right now. I hope whatever this is is diagnosed quickly so we can treat it.

Violet has done (baby food wise) what all of my older kids have done - when she is old enough to EAT it, she can have it. She never took baby food from a spoon, rather, she started off with soft banana, avocado, cheerios (wheat!) and the like, and progressed to other easy to eat finger foods and now eats (literally) everything we do. The only thing she will allow us to spoon feed her is the fortified oatmeal we give her in the mornings (this is where we dump in a lot of the fats/calories the pedi wants her to have extra because she isn't growing well). She has never really liked anything toooo carby (except cheerios) - she's the first of my kids to turn down bread, crackers, goldfish etc. We live in Germany, so all of the wonderful bakeries around make it easy for us to get fresh bread with dinner almost nightly - guess that will have to stop, huh?

As to me - I have had gut issues, but nothing severe enough to go to the doc about - more just annoying than anything. However, the suspected cause of her IUGR was my extremely severe hyperemesis - I did not gain any weight(rather, I lost quite a bit) at all during my pregnancy, and was admitted several times for extreme dehydration. The running theory is that I was so malnourished that there just wasn't anything for either one of us to 'eat'.

If this does pan out to be celiac, how exactly do we do this? I have *no* clue how to go about eliminating gluten. Is this something that our entire family would need to avoid? Is it, like nut allergies, where cross contamination causes an issue? What about if, say, a sibling was eating xyz food w/ gluten and vi doesn't eat it but is around it - woudl that cause issues? (I'm sorry -I know I sound stupid, but I really am totally clueless. I'd never even HEARD of this until her doc mentioned it as a possible cause for her growth failure).

I've only been doing this for one month, so I'm by no means an expert, but this is what the hospital told us to do:

Eliminate wheat, barley, rye, and triticale from the diet. Any products that are made using these ingredients need to be eliminated. We were told to check the following for "hidden gluten": bouillon, candy, drink mixes, flavourings, gravy, oatmeal, salad dressing, marinades, deli meat, seasonings, soy sauce. This requires reading labels and contacting companies when the label does not provide enough information. We had to get our daughter her own toaster, cutting board, and colander. We were told that the dishwasher would adequately clean dishes, but to dispose of anything made of porous material such as wood.

Cross-contamination is an issue. People on here seem to react to varying amounts of gluten, some to just a crumb. Any amount of gluten could cause damage to someone with celiac, so sticking to the diet is important. If your child does have celiac, the GI will likely recommend that the rest of the family be tested. It turned out that I also have celiac, so I'm basically cooking gluten-free now, but we still keep "regular" bread and cereal in the house (in a separate cupboard) for those without celiac.

All this being said, once we got over the initial shock, it has turned out to be easier than we thought it would be. We found all of the items listed above in our regular grocery stores and then purchased her some gluten-free cereal and waffles that she loves. She can still eat fruit, vegetables, meat, rice, and dairy. We're discovery new foods while eating more whole foods and less processed foods - which is better for all of us.

[sb2178]

Yes, and if she responds to the diet (if nothing else shows up clearly positive, I'd try it for a month or two as kids are notoriously hard to diagnose sometimes) or tests positive, be sure the whole family is tested.

It's really easy to be contaminated by young children. I babysit sometimes and have to be very obsessive about avoiding exposure. Even with older kids, it would likely be easier to take the whole household gluten-free for at least the first few months. After you're partway through the learning curve (and have a healthy baby baseline!), you can start trying to segregate to see how that works.

[Roda]

If she is celiac and you want to continue to breastfeed you will need to be gluten free too. You may consider testing for yourself before you were to go gluten free for her.