This topic contains 4 replies, has 2 voices, and was last updated by Jacqueline Scarbrough Jackie Scarbrough 9 years, 5 months ago.

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  • #7818
    Jacqueline Scarbrough
    Jackie Scarbrough
    Participant

    Hi Everyone, this post is in regards to my year old daughter (13.5 months to be exact).  I was not gluten free when I was pregnant with her.  About a month or so after she was born we realized she was reacting to my breastmilk while I was consuming gluten, then shortly after found the dairy was also a very big issue for her (it didn’t seem to effect me, but I’ve since then been tested through enterolabs and was positive for everything).  When I quit both gluten and dairy it was so wonderful she turned into a very content happy baby.  It was almost too amazing to believe.  She went up in that one month from 5-10%tile to 50th!  I was just so happy to have figured things out so early on.  

    I continued to nurse her, with a few bumps along the way when I’d accidentally eat the wrong thing she always let me know, she was my little watchdog, poor thing.  I still don’t really know if she was really reacting to things herself or if my antibodies were just bothering her.  Anyway, later in her first year was when I got the testing and learned of all my other sensitivities soy, egg, yeast and confirmed the gluten and dairy.  About nine months she was gradually nursing less and eating more on her own.  Up until that point she was a healthy and happy baby, growing and developing well.  We have limited her to simple foods, plain baby food at first but now a wide assortment of fruits, veggies, and meats mostly; none of the things I wasn’t eating anyway.  For awhile she would eat just about any fruit or veggie we put in front of her (unlike most kids even small bits of lettuce, brocolli and peppers), I was just so proud of her for it.  Lately she’s been a little more fussy, but still eating well.  She doesn’t get any processed foods, dairy, soy, corn, rice or any other gluten.  We tried offering her eggs for the protein at breakfast, but she just simply refused them so I just let that rest for now. 

    We have completely stopped nursing now and she has just gradually become more and more irritable.  Her growth curve flat-lined between her nine and twelve month visit.  She also hasn’t started walking, which isn’t a huge concern yet, but she isn’t showing much interest in it.   She had always been 50th%tile or higher, but that time she was down to 25th.  My husband thinks it’s because she is on too limited of a diet, maybe she’s lacking something.  She really eats a LOT for a little girl, whole platefuls of food, it almost seems like way too much if you ask me but she acts hungry so we don’t limit her portions.  

    The other thing is that since stopping nursing she barely drinks anything.  We were giving her bottles frozen breastmilk for awhile but ran out.  Now she refuses sippy cups most of the time, we’ve offered her almond milk, juice (OJ and apple, we tried both watered down and regular), water, and coconut milk which she’s taken a few sips of then didn’t want it.  Once in awhile she’ll drink half a cup or so, but usually it’s just a few sips and that’s it.  She gets mad and throws the cup, I think because she doesn’t like the taste.  Out of desperation (even though I was leary) we even tried regular milk just to see, but she refused that too.  We tried regular cups with a straw, even going back to bottles, but the same thing a few sips then anger.  So anyway, she’s been constipated.  She goes once or twice a day usually but it’s hard and dry and often she doesn’t go until she’s falling asleep.  She’s very cranky lately and is very hard to deal with.  This is all very similar to my older daughter at this age, who later ended up being diagnosed with celiac (which began our journey).  But like I said she hasn’t had anything that should be causing her to be this way.  We’ve finally come to realize she likes the 100% Juicy Juice boxes, so we’ve started giving her those just so she has some fluids. 

    Yesterday, we took her back for a “weight check” and she lost a pound in the past month.  She weighs 18 pounds now, which is only about 5-10%tile.  Her doctor sent us for lots of bloodwork (which in itself was a trip!) including a celiac panel which I know is useless since she has never had gluten.  He is also checking her iron, vitamin D, thyroid, complete metabolic panel, CBC…….I think that’s it.  We’ve tried giving her infant vitamins but she literally chokes and gags and spits them out.  I just don’t know what else to do.  He suggested PediaSure (which contains corn so I didn’t want to do it).  I tried yesterday, but of course the normal refusal.  My husband even snuck some of it into her juice box but as soon as she tasted it she made a face and wouldn’t drink anymore.  Needless to say, she’s very stubborn.

    Anyway, sorry this is so long, I’m just worried about her and wondered if anyone had any advice?  I guess my concerns are that something bigger may be wrong perhaps harm done while in utero or from bad breasmilk.  Thanks.

    Jackie

    #8654
    Kate Osborne
    Peter Osborne
    Keymaster

    Jackie,

    Have her checked for diabetes.  I would also recommend additional food allergy testing.  Elisa Act Biotechnologies performs the most accurate and reliable profile.

    #8659
    Jacqueline Scarbrough
    Jackie Scarbrough
    Participant

    Is there something specifically that is leading you to consider diabetes?  I believe the ped did say he was going to check her glucose level too, but we have not received any results yet.  I was also thinking other food allergies and questioned about that, but he said probably not because she does not have eczema, vomitting, or diarrhea.  I do wonder about nutrient deficiencies since we have had her on a pretty limited diet.  If I was deficient (having malabsorption) would that contribute to her “starting out” deficient, in the womb or being exclusively breastfed?

    #8665
    Jacqueline Scarbrough
    Jackie Scarbrough
    Participant

    I can hardly believe this myself and I just don’t understand how it could be true: but my daughter’s doctor called today and her celiac panel (which I thought was useless because she’s never had gluten) showed elevated antibodies!  I think it was TTG, but my husband took the call so I did not get to ask.  She has never in her life consumed gluten!  I do not understand how she could be getting cross contamination.  We have a completely gluten free home; new cookware, I’ve checked hygiene products, she’s not in daycare so she ONLY eats at home.   I think I’m gonna go insane, this is such a nightmare!

    #8666
    Jacqueline Scarbrough
    Jackie Scarbrough
    Participant

    OK mystery solved.  The dr. mixed up my younger daughter’s lab results with my older daughter (the one who is diagnosed with celiac and was getting her antibodies checked as a follow-up)…..phew. 

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