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Hopefulmama

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Hopefulmama Apprentice

A little background info.-this could get long. I just found this site last night after 2 years of desperation. My daughter is 2 1/2 years old. She has never slept well-had colic, still wakes several times/night, and has bad night terrors that are starting to occur almost every night. The more I read, the more symtoms she seems to have of celiac/gluten intolerance. She thrived with her growth until about 18 months. We stopped breast feeding at 16 months. She hasn't grown much at all since 18 months and yet she eats A LOT. She has a lot of gas, and sometimes her belly really pokes out. A few times after she played w/ Play doh she got red marks on her hands. Nothing severe, but weird. She doesn't get it every time though. Noone in our family has been diagnosed, but that doesn't mean noone has it. Lately she gets diareha about twice/week-for about 3 weeks now. She is so sleep deprived and so am I. I am expecting in a few months and would like to get this under control before the new one arrives. I am tired of seeing my daughter suffer with the night terrors. I am not sure if this is all related or not-I also don't know what is normal 2 year old behavior. I don't know how to approach this with her ped. I've read that the blood test isn't always positive-esp. when they are young. If she tests negative, my husband will not be super supportive of the diet. Shoudl I just go with the diet and forget seeing the ped.? Or what questions should I ask? I am overwhelmed and trying to swim through all of the great info. here. Can anyone point me in the right direction? Please?! Thanks so much for any help! I really need it!


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lovegrov Collaborator

From everything I know and have read, your daughter is in the more reliable testing stage. In addition, she would seem to have the familiar "failure to thrive," the most common symptom for young kids.

richard

LauraWass Rookie
A little background info.-this could get long. I just found this site last night after 2 years of desperation. My daughter is 2 1/2 years old. She has never slept well-had colic, still wakes several times/night, and has bad night terrors that are starting to occur almost every night. The more I read, the more symtoms she seems to have of celiac/gluten intolerance. She thrived with her growth until about 18 months. We stopped breast feeding at 16 months. She hasn't grown much at all since 18 months and yet she eats A LOT. She has a lot of gas, and sometimes her belly really pokes out. A few times after she played w/ Play doh she got red marks on her hands. Nothing severe, but weird. She doesn't get it every time though. Noone in our family has been diagnosed, but that doesn't mean noone has it. Lately she gets diareha about twice/week-for about 3 weeks now. She is so sleep deprived and so am I. I am expecting in a few months and would like to get this under control before the new one arrives. I am tired of seeing my daughter suffer with the night terrors. I am not sure if this is all related or not-I also don't know what is normal 2 year old behavior. I don't know how to approach this with her ped. I've read that the blood test isn't always positive-esp. when they are young. If she tests negative, my husband will not be super supportive of the diet. Shoudl I just go with the diet and forget seeing the ped.? Or what questions should I ask? I am overwhelmed and trying to swim through all of the great info. here. Can anyone point me in the right direction? Please?! Thanks so much for any help! I really need it!

Hi--

I would for sure ask the pediatrician for a blood test. Chances are they will be positive. If they are not, perhaps you should still push for a biopsy (that is considered the gold standard for diagnosing celiac disease). In my opinion, it would be hard for me to follow the gluten-free diet if I didn't have medical proof.

We have a 2 year old who was diagnosed about a month ago (she had some of the symptoms you listed, ie distended tummy, digestive problems, light sleeper, thrived until 18 mos, stopped nursing at 16 mos, etc) and our world has changed so much since she started the gluten-free diet. She is feeling sooo much better, smiles more, laughs more, plays more, does not ask to be picked up as often, etc.

Let me know if you have any more questions!! Good luck!! Laura

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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