Opinions? 11 Month Old Symptoms

[Violet Ave]

Hi everyone! I am a first time poster here. I am hoping for some opinions and information from parents of little ones with Celiacs!

Anyway, I have an 11 month old daughter that just underwent blood testing for Celiacs. We haven't gotten the results back yet (hopefully this weekend), but did find out that she is iron deficient (one level was 21, with normal being 40+) and her alkaline phosphatase levels were very elevated at 2000 (with normal being below 350). I started doing some Google searches of her symptoms plus these test results and kept coming up with Celiacs. So, what do you think? Could these symptoms possibly be signs of Celiacs?

* Wonderful weight gain until 6 months, when I introduced solids. She had been breastfed exclusively up to that point. She dropped from the 70th percentile in weight to around the 10th percentile

* Constipation - pretty much since birth. She has gone up to almost two weeks without having a bowel movement

* Delayed gross motor skills - she started rolling at a reasonable age, but is nowhere near crawling, standing, getting into a seated position on her own

* Chronic cough for about the past 2 1/2 months and susceptible to getting sick (she goes to daycare 3 days/week). She has been wheezing as well.

Our previous pediatrician kept blowing me off when I wanted to address her lack of weight gain, so I switched to a holistic pediatrician at the advice of our chiropractor. He ordered the failure to thrive panel plus the celiac panel. She also had a chest x-ray to make sure her lungs looked okay (which they did) and a urinalysis, which I don't have the results back from yet either. From the ftt panel, the only things that came back abnormal were the iron leves (on two different tests) and the alkaline phosphatase levels. He also started her on breathing treatments (nebulizer with albuterol) and took her off the Lactulose prescription from my previous pediatrician and started her on magnesium, omega 3 fatty acids, Vit C, probiotics (she had been on the infant kind, now on regular), and Ready Set Go. He also has referred us to an occupational therapist to evaluate her gross motor skills. I must admit that it feels good to have a doctor taking my concerns seriously and not ignoring me!

Now for some questions -

1) Does she present as a baby with celiacs?

2) Should I start her on a gluten-free diet?

3) If I am nursing, should I also be gluten-free? (I plan on nursing her until at least age 2)

4) I have read that there is a pretty high false negative rate in babies and toddlers. Can the testing ever be conclusive at this point?

5) Anything else you want to add? Advice? Things to do or ask?

Thank you so much for your input!

-Julie

[tarnalberry]

1) Does she present as a baby with celiacs?

2) Should I start her on a gluten-free diet?

3) If I am nursing, should I also be gluten-free? (I plan on nursing her until at least age 2)

4) I have read that there is a pretty high false negative rate in babies and toddlers. Can the testing ever be conclusive at this point?

5) Anything else you want to add? Advice? Things to do or ask?

1. What you describe is consistent with a baby with celiac. That doesn't mean it's not something else, but it's not inconsistent.

2. Depends on if you're going to do any more diagnostic testing. If you're going to do a biopsy, or further blood work, she needs to be on a gluten-containing diet. But since the celiac panel has been run (assuming it was a full panel), it's completely up to you. The gluten free diet IS a test in and of itself. Some doctors will use results from that as evidence for/against a diagnosis, others won't. It's a very personal call.

3. Yes, gluten can pass through breastmilk.

4. No, testing can't be conclusive at this point. Well, aside from the diet as a test.

[Violet Ave]

We found out last week that she does indeed have Celiacs (per blood tests). The gluten free diet has been going well! She also is doing dairy free until June or July and then we will try to introduce it again. Since starting the gluten-free diet about three weeks ago, she has gained almost a pound. This is after 5 months of gaining almost nothing. Needless to say, I am so happy to see results so quickly! In addition, she is starting physical therapy and speech therapy once a week to help with her delays. I am so relieved to have a diagnosis!

Julie

[melblondin]

Hmmm - what you describe makes me wonder about my 8 month old and me and my whole family for that matter! I was diagnosed with a wheat allergy and hypothyroidism in 2008. I went on and off the gluten free diet, but as of last week am going gluten-free for good because I strongly suspect celiac. I am currently pushing to get the genetic testing done because I don't want to go back on gluten to get accurate results for the blood and/or biopsy. If I have the genes for it, that will be enough to convince me that I have it and to test all the kids.

Now as for my kids. My three boys are all in the 10th percentile or lower (one being in the 3rd) and they all stopped growing around the time we introduced solids. We just saw that my 8 month old went from the 75th percentile to the 10th percentile in a 5 month period of time. He also has TERRIBLE reflux and whenever I give him solids, he gets gassy, constipated, and wakes up screaming in the middle of the night. He currently just eats bananas, apples, and pears because everything else doesn't agree with him. I've also noticed patches of eczema flaring up all over his legs.

My other two boys were checked for growth hormone deficiency which came back fine. At 2 years old the now 3 year old tested "inconclusive" for celiac, so both older boys went to see a ped GI and he just put them on a high fat/high protein diet, checked for parasites in their stool (there were none) and then pronounced them fine and said they were just small. I'm frustrated though because they both had loose stools for a good year, complained of constant tummy aches, and the now 3 year old has little bumps on the back of his arms all the time and anytime we eat, his cheeks look sunburned red and are dry. He gets so dry at night that he wakes up with claw marks on his back too from itching in his sleep. Both boys also have dark circles always around their eyes. I'm just frustrated and want to figure out what's going on so that I can help them grow and feel healthy.

My thought was to see if I have the genes for it and then to pursue them if it comes up positive. I have headaches, severe constipation, bloating, gas, dry, itchy skin, fatigue, anemia, hypothyroid, cramping, and arthritic type joint pain in my hands, just to name a few symptoms ;-)

I'm glad to see that you got a diagnosis and I'm hoping to figure this all out soon as well. I feel like I'm going crazy and my parents think everything and everyone is fine and that I'm just overreacting and chasing after something that isn't there. Ugh.

[melblondin]

Oh - I forgot to mention that the 8 month old also turns bright red on his cheeks and arms and has been congested (but doesn't have a cold) since birth. Can anyone relate?

[mommida]

Julie,

I am so glad you have your diagnoses! Keep your gluten free yummy stash! It will blow your mind how many times your child will be offered food treats. Make show you have something in there that is totally awesome, and better than what has gluten in it.

Melblondin,

Good luck with the testing. Just remeber genetic testing can still give you a false negative.

[momtok&m]

Hi Julie! My 14 month old has been gluten free since the beginning of the year. I'm also a BFing mom and will nurse her until she's 2 or 3, whatever she chooses Since she's been on a gluten-free diet she eats so much more and she's getting back up there on the growth charts! Anyway, I decided to continue to eat gluten because she doesn't nurse as much now that she enjoys solid food (plus, there are differing schools of thought on the subject). Well, I take that back, I gave up gluten for Lent. Since I've given it up, I have not noticed ANY change in her. I'm glad I gave it up though, I'm learning so much about how to cook and how gluten-free foods taste compared to their gluten-containing counterparts.

Here's my advice to you: Don't go out and spend a fortune on gluten-free foods for your daughter. It's tempting but you really don't have to. I use Kix as a snack and her favorite cereal is rice chex. If we go out to dinner we have been going Japanese or Chinese-more options for little ones. The thing I've spent the most time and money on is baking. I did buy a bunch of flours so we can all have some treats once in a while. Tonight we're having pizza but I'll make the dough from scratch and we'll all eat it.

Here's my biggest problem-relatives who think I'm crazy! My husband's uncle gave me nasty looks because I wouldn't allow her to eat fish fried in oil that he had fried regular breaded fish in. Oh well, I'm used to that since we are attached parents!

Best Wishes on your new adventure, and use this forum, I've learned a ton here!

Tara