Friday, December 10, 2010

Teething and Gluten Free Life

Poor Zoya has not had a great time with teething lately. Every time she has cut a tooth she has had tons of drooling, stuffiness and/or a cold, a low grade fever, cheeks that look like they've been slapped from time to time, and the least fun part of all...diarrhea! She is currently cutting her top two canine teeth and her first two year molar....all at once.....OUCH! She looks like someone beat her up with the puffy purple watery eyes and pink cheeks, not to mention the constant stream of drool hanging out of her mouth! Our OT gave us a purple P-chew which is her new best friend. She has been gnawing on that thing non-stop! I've been using a tiny bit of orajel which I know is helping because when she sees the tube she takes out her binky and opens her mouth (even though she makes the squishy "this tastes really weird" face). I've also done Tylenol a couple of times....but even though I think she looks miserable...she is still happy as can be...thank goodness because when she cut her first two teeth (since being home) she was sooo crabby and whiny! She doesn't love to bite into anything cold so the frozen washcloth, frozen banana or other type of frozen food so that won't work with her. I have decided to throw a HELLO TEETH party when they're all in :) I can't wait!!

And onto the diet area....Zoya eats pretty darn healthy if I do say so myself! She has been seeing a doctor who specializes in nutritional response testing (the same one I've seen myself for a few years). She has been taking various whole food supplements and vitamins since being home and they've helped GREATLY! She currently takes DHA/EPA, Vitamin D, a probiotic, calcium, nutrivene nightime formula, and longvida curcumin (all reccommended by the Trisomy 21 research foundation) along with a couple whole food supplements that change as needed.  But even more help than the supplements is the "diet plan" (which is more a "way of life" plan) that she has been on. Since Zoya was first home, we've done very little carbs/sugar and tried to do lots of protein and veggies. She eats better than me and better than most 2 year olds I know! She likes meat and eggs and vegetables, which is great! She doesn't like them as much as say, cookies, but if that's what I feed her she will eat it happily (mostly...with the exception of a few days ago since she is now feeding herself almost 100% independently, she got a spoonful of ground turkey and veggies and then flicked the veggies off her spoon until there was only meat left...stinker). All of her meals have always been protein and vegetables. In between meals she would eat goldfish or pretzels or crackers. She snacks 2-3 times a day at least.

About a month ago the doctor she sees for nutrition suggested cutting out ALL GLUTEN since Zoya was still having issues with diarrhea. I knew it was coming and I was dreading it.  I have to say, gluten-free snacks are pretty easy to find. I didn't have to worry too much about her meals since they were already gluten-free (with the exception of the breadcrumbs I used for her burgers...which I have since changed out for gluten-free). We found pretzels, crackers, animal cookies, and cookie and pancake mixes that are all gluten free. Other things we use for snacks are Cinnamon Chex Mix, or corn tortilla chips, or some types of potato chips, which are all "naturally" gluten-free. I didn't know how much this would help since the only gluten she ate was during snack times or during special occasions like a birthday party or something. I also didn't know how much difference it'd make since her blood work for celiac's disease came back negative. 

I have to admit it has made a HUGE difference!! It has taken about a month but her diapers are finally starting to get much better...even with the teething! Solid poop is soooo much easier!! In addition to the diarrhea issue, I've noticed other big surprise changes with the GF diet and the nutrition doctor agreed when she saw Zoya for the first time since starting the diet! Zoya is able to focus for longer periods of time and has even added a few new movies to her previous SAME OLD MOVIE which was the only one she wanted to watch. I sat down to work on some flash cards with her that I hadn't done in about a month. She sat so long and correctly picked the right card out of a choice of 3 almost 100% of the time! She seems less hyper and more focused overall. She isn't on the go as much as she used to be.  It's almost like her brain has been able to slow down and calm her down as well.  She seems to be out of the fog that I never knew she was in if that makes sense!  I mean she's still the same old goofy silly Zoya, but just down a notch or two.  Maybe she's matured in the month, but I really think a lot of that is attributed to cutting out gluten.

Eating gluten free makes things a little tricky at times (going out to eat, parties, telling her she can't have a piece of cake that everyone else is eating, etc.) but overall its fairly easy and has made a big difference. For now Zoya will stay gluten free, maybe some day in the future I'll try to reintroduce it and see if her body can tolerate it any better, but that likely won't be the case.  Many kids with DS have celiac's disease or are gluten-sensitive, even when modern day tests can't detect it. 

Anyone else have kids eating GF or thinking of going gluten free?


  1. Have you had her tested for giardia and h-pylori? We have seen too many kids go through all kinds of things like you describe when pediatricians in the US don't think to test for these basic parasitic illnesses and bacterias that almost all orphans from foreign countries have. Helped us and our little guy from Ethiopia get out of the dietary cycle you are in. Hope this helps you.

  2. Hi! Darya doesn't eat much gluten, either, but we haven't had any issues with diarrhea. What I want to know, is how did you get Zoya to eat solids like goldfish AND feed herself??? I think Darya's the same age as Zoya (June 2008), but she's only been home 2 months. In the morning, she usually has her oatmeal with a banana mushed up in it, but if there's too big of a banana chunk she will push it out of her mouth. She can eat those baby fruit puffs with no problem (mostly using her tongue to chew), I guess since they pretty much dissolve. Last night she had beef stew (mushed up) and loved it. Also, she still drinks from a bottle/sippy cup and will not hold it. I try putting her hands on there to help me hold it, but she usually pulls away. She won't feed herself, though she's picked up a couple of fruit puffs herself (yay!) and put them in her mouth. Any advice, or previous blog posts I can read? Thanks!

  3. I hate that the so-called "experts" say that diet doesn't affect people that much. There was a study published about autism a few months ago saying the GF/CF diet didn't help. I would love to grab those "experts" and say "Of course what you eat changes how you feel and act, even I know that". So glad Zoya is getting better on her diet. You aren't the first family I know who has great results from the GF diet. I keep wishing I could take Kevin somewhere to control 100% his food intake, then see if it changes him. Guess I'd rather cut off a limb that take away those cheeseburgers :-)
    Happy Holidays, Basile Family.

    Sue M.

  4. Oh Zoya, I feel for you. Teething issues are really hard to deal with.

    Great information Sarah, thanks for posting about GF diets and what you have learned. I'm not familiary with nutritional response testing, this was really interesting to read about.


  5. My 14 yr old has had stomach issues for a while and we were sure
    that she had a gluten sensitivity, especially after we saw improvement with diet changes. But after a battery of tests, blood, endoscopy and intestinal biopsy her GI doc is sure that gluten hasn't been her problem and that the vitamin D and probiotics that she started on are really causing her improvement.So maybe if Zoya keeps up that treatment you will be able to add back things to her diet, it certainly is easier than going gluten free. Love and prayers to you and your sweet girl.

  6. I was GFree for a LONG TIME! If you need any advice just send me an e-mail...I have an AWESOME PB Cookie receipe...not sugar free, but gluten free!