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My Three Year Old


RachP

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RachP Newbie

Hi

Just registered - new here. So forgive me if I am posting in the wrong forum.

I have a little girl who is three. Her whole life she has been really difficult to feed and generally quite well, "challenging" all around food and growing. She is really small - currently round the 9th centile (that's the British centile charts!) which is worrying because when she was born she was on the 50th - smack on average.

I am interested very much in coeliac disease/gluten intolerance. Don't know how I got to this idea but so much of what I have read seems to fit her "symptoms"

She is/has:

Well, like I already said, she's pretty tiny. I have been monitoring her weight at home and in the last six months she has put on NO weight, not even half a pound. She weighs 28 pounds and she will be four years old at the end of Sep.

She is the fussiest eater ever. She eats maybe a couple of mouthfuls of something and then says "I don't like it" and refuses to eat anymore. Not even ice cream or chocolate will tempt her. At mealtimes she finds any excuse not to eat. She has tantrums and gets down from the table. It's weird though because at other times she keeps telling me she's hungry and wants something to eat. (But whatever I give her she has one bite and then gives it back).

She does the tiniest little poos - they are hard and small and kind of light coloured and they float!

She gets strange little spots on her arms that she picks and picks.

She is the grumpiest kid ever. (I know that sounds really bad). I love her dearly, but any little thing sets her off. She has tantrums about lots of things, many times a day. She whines a lot.

She gets tired easily. She will not walk anywhere and wants to be carried or pushed in the stroller.

Basically, I am not expecting anyone here to give me a diagnosis on the basis of this information - don't worry!!! But does this sound at all like anyone else's kid prior to diagnosis? We are now involving the doctor and the health visiting team and we don't know if there is something wrong physically or whether she is just being an exceptionally fussy eater. I am considering pushing the doctor to test her for coeliac disease. Should I do this or am I just being paranoid?

Would be grateful for any advice as to whether we should pursue testing. Not expecting any opinions more than that!

Thanks

Rach


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dandelionmom Enthusiast

I would push for testing for her (either blood tests or a biopsy of her rash). Her behavioral symptoms and her lack of growth sound exactly like my daughter before diagnosis.

Amyleigh0007 Enthusiast

Your daughters eating habits sound a lot like my sons. When he was about 3 he would go all day only eating a bite of a cracker. He refused to eat. We begged him. He finally got up to eating about 10 foods but very small portions, only a bite or two of this and that. This went on for 5 years. He was diagnosed in March and since then has been eating us out of house and home! He has gained 7 pounds. I would get your daughter tested.

I want to add that he was tested for Celiac when he was 4 but the test was negative. I pushed for him to be retested when he was 8 and it was positive.

sixdogssixcats Apprentice

Your daughter sounds just like mine! Catherine, age 3 1/2, was diagnosed with celiac a little over two weeks ago (although we'd long suspected it), and the change in her from being on a gluten-free diet is nothing short of amazing.

It's difficult to describe the difference in some respects. She's sharper, less amorphous, with well-defined edges. Until 2 1/2 weeks ago, she subsisted on a liquid protein supplement and dry cereal and crackers, being exceptionally texture averse. She now shovels in fresh fruit and has even taken a few bites of meat (beef and chicken!) for the first time ever in her life! She still melts down if you look at her funny, but the rages do seem to be less frequent and shorter in duration.

She pooped tiny little rocks ever since we took her off hypoallergenic formula at age 2, and in the last week or so, her poo has been more formed. Catherine has psoriasis, which is another auto-immune condition, so she has skin issues, too. She was diagnosed with psoriasis shortly after her 2nd birthday. To top it all off, she also has reflux and has since birth.

I have a different child than I had two weeks ago, prior to being gluten-free. She will still try the patience of a saint, but she is sooooo much improved in every way.

angie315 Apprentice

Wow, your daughter sounds a lot like my prior to diagnosis. My daughter was also only 28 lbs at her 4-year old check up. She was also born at the 50% and stayed there until we introduced solids at 9 months. Then she fell to the 4th % (by her 4-year old check up). She never had diarrhea but she did have very light stools. She also never wanted to eat and had huge mood swings. Since I had done some research on Celiac I insisted on having them order blood work although my doctor (although she insisted she would have to have diarrhea for Celiac). She was positive and now since we are gluten free she is gaining weight and the mood swings are so much better!

Hi

Just registered - new here. So forgive me if I am posting in the wrong forum.

I have a little girl who is three. Her whole life she has been really difficult to feed and generally quite well, "challenging" all around food and growing. She is really small - currently round the 9th centile (that's the British centile charts!) which is worrying because when she was born she was on the 50th - smack on average.

I am interested very much in coeliac disease/gluten intolerance. Don't know how I got to this idea but so much of what I have read seems to fit her "symptoms"

She is/has:

Well, like I already said, she's pretty tiny. I have been monitoring her weight at home and in the last six months she has put on NO weight, not even half a pound. She weighs 28 pounds and she will be four years old at the end of Sep.

She is the fussiest eater ever. She eats maybe a couple of mouthfuls of something and then says "I don't like it" and refuses to eat anymore. Not even ice cream or chocolate will tempt her. At mealtimes she finds any excuse not to eat. She has tantrums and gets down from the table. It's weird though because at other times she keeps telling me she's hungry and wants something to eat. (But whatever I give her she has one bite and then gives it back).

She does the tiniest little poos - they are hard and small and kind of light coloured and they float!

She gets strange little spots on her arms that she picks and picks.

She is the grumpiest kid ever. (I know that sounds really bad). I love her dearly, but any little thing sets her off. She has tantrums about lots of things, many times a day. She whines a lot.

She gets tired easily. She will not walk anywhere and wants to be carried or pushed in the stroller.

Basically, I am not expecting anyone here to give me a diagnosis on the basis of this information - don't worry!!! But does this sound at all like anyone else's kid prior to diagnosis? We are now involving the doctor and the health visiting team and we don't know if there is something wrong physically or whether she is just being an exceptionally fussy eater. I am considering pushing the doctor to test her for coeliac disease. Should I do this or am I just being paranoid?

Would be grateful for any advice as to whether we should pursue testing. Not expecting any opinions more than that!

Thanks

Rach

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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