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Worried About Toddler Daughter
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My almost 33 month old daughter's doctor told her father today that he is concerned that she is malnourished. She hasn't gown at all in a year and she was only 25% to begin with - now 3%. Like any mother I am really scared.

The doc said the likely cause is malnourishment but she eats - and not just junk food. She gets lots of fruits and eggs, beans, meats etc. She eats a full breakfast before daycare, eats another breakfast at daycare and then has 2nds and 3rds of meals the rest of the day. At school she's known as an eater.

Gluten problems are my first instinct because I have them. I have never tested possitive for celiac but I had a laundry list of symptoms before diagnosis and her issues remind me of my childhood. She also has chronic ear and sinus infections, bread cravings and soft diapers.

My biggest concern is that because I am not technically celiac that this issue won't be taken seriously. I am going to need some sort of doctors note to get the daycare (and my ex husband) to follow any special diet and am scared I wont be able to get it for intollerance. I was gene tested years ago and had 2 copies of an intollerance gene and have always responded great to the gluten free diet.

Any parents in similar place? What did you do? Are there tests I should be asking for?

Thanks so much for any support!

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Could you explain this to your x? Would he be willing to try the gluten-free diet for her sake? If you get along at all, I'd try to talk with him. That sounds like your bigger challenge than the school. Good luck. It probably is celiac.

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I can totally relate! I put my daughter through genetic testing and an endoscopie. She came back negative and only has one celiac gene. However, we noticed she had issues. We found a forward thinking doctor and had her food sensitivities done and she came back intolerant to gluten, dairy, eggs, beef, mustard, soy, ginger and certain beans. If you can take her to a naturopathic doctor and get a food sensitivities test done you'll finally be able to really put your mind at rest and start her on the right path.

Best of luck.

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You indicated some definate signs for a young Celiac child - an inheritable Gene, slow growth and digestive issues.

A child has enough challenges besides dealing with a Celiac Mental, Physical and growth issues. This also includes a higher Temperment, irratability and the uncomfortableness that comes with ingesting gluten. This was a big part of the socialability issues our pre-school child had before his diagnosis.

Being a father of 5 celiac diagnosed children and a celiac wife we have experienced the a widerange of child and adult lifestyle, physical and sensitivity issues.

Get the diagnosis done early!

  • Physical damage and diseases - Most important this prevents the that can occur down the road for a undiagnosed Celiac or Gluten Intolerant as they grow older!

  • Mental, Physcological, and Temperment issues - Removal of gluten from a Celiac or Gluten Intolerant youngster, lessen and or prevents these known gluten intolerant issues from occuring!

  • Saves more money in the long run on misdiagnosed health and or gluten caused health issues!

Having the diagnosis in hand when you need it (always keep a copy!) helps to:

  • Get support from educational systems,Care takers, emergency responders, medical personal\facilites and started early.

  • Is needed to get a 504 plan in place if you need more assistance and support from these entities.

  • Prevents a great deal of headaches, frustration and anguish by not having to go through the last minute process to get the support and or meet a deadline (that everybody fails to because of lack of time)

Yes, if Gluten intolerance or Celaic, it is something your ex and you should be involved in and understand for your childs sake. It will take advocating, dillegence and teaching skills from both of you to help get the support your child needs, to educate others, and to teach your child the lifestyle skills he\she will need to fend for themselves as a Celiac or Gluten Intolerant.

Learn more about this Gluten Intolerance from forums like this, other websites and become a member of a local support group\s.

Good Luck!

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Thanks everyone, I really appreciate your thoughts! I know a great MD who is also naturpathic in the area - I'm hopeful that if I can get my ex onboard with taking her their for testing that he will start to understand the issues. The biggest hurdle will definitely be getting him on board so he doesn't undermine any diet we put her on.

I dread the idea of my daughter growing up with the pain and discomfort I did when we could pretty easily change it for her. Thanks again!

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    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
    • So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.
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