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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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    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
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