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Low Ferritin Level / Non Sleeper

finally diagnosed

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finally diagnosed Apprentice
finally diagnosed
Posted

Hi everyone. I myself have Celiac and I suspect my daughter my have it as well. Here are my issues:

She is 10 / never a sleeper as a baby she would wake 4-5 times a night , same as a toddler 4-5 times a night.. as she grew older always had issues with constipation (as did I with celiac) she was on miralax for first 3 years of life and still has constipation issues now.has hypoglycemia.. every couple of years I have her tested for celiac and it always come back negative.. as of today sleep has always been an issuse but for the last 5-6 months she can't sleep, she will fall asleep for about 3 hrs wake up about 3-5 times a night.. she is fine we are exhausted ;) we met with a neruologist to have a sleep study, they declined wanted to put her on klonipin or anti-depressent (which i outright refused) she is not depressed, very active girl, dance class, swim team plenty of friends..so they drew her ferritin level and she should be the range is 50 to 70 her results are 37.4.. i asked about food allergies keeping her up, explained about celiac.. everywhere i have read that children with celiac have low ferritin levels which will increase once starting a gluten free diet.. they (doc / specialist) want no part of this.. they want to put her on 650mg of oral iron.. which in turn will make her constipation greater and put her back on miralax... they also ordered a 48 hr EEG to rule out seizure activity.. i don't think this is the case...she is very alert when she wakes up and can't sleep.. no s/sx of seizure.

i am torn.. i want her to sleep, i want her levels to rise,, i know i read that celiac can present itself before puberty which she is so so close too... has anyone else had an issue like this with their child....

my family always teases me in a fun way when i say "maybe you have celiac", but this time i am leaning towards it.. my husband and i switched rolls, i want to go the natural approach, change her diet..he wants the medical tests done.. i am the one usually pushing for the tests... any input would be great....

thanks..

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tarnalberry Community Regular
tarnalberry
Posted

she'll need some iron supplementation, even if she were celiac and went gluten free, for a while to bring her levels up. does taking magnesium help balance out the constipation? (that's what I use while taking iron.) also, would she have to be on that high a dose, or could it be lower (with a longer treatment time)?

I would push for the sleep study, specifically asking "why do you want to put her on meds that can be difficult to come off of before doing any diagnostic testing?". (antidepressants are useful for lots of things that are not depression, so I wouldn't assume they think she's depressed just because they prescribe a SSRI or SNRI.) I would also push for the testing. Honestly, your doctor is YOUR SERVICE PROVIDER. If he/she isn't providing the service you want, fire them and get another.

That said, you've noted that she's always had negative tests. So why not try the diet - maybe tell your husband "let's try it for two months, see if we see any difference. we'll do our own in-home test"?

finally diagnosed Apprentice
finally diagnosed
Posted
  • Author

she'll need some iron supplementation, even if she were celiac and went gluten free, for a while to bring her levels up. does taking magnesium help balance out the constipation? (that's what I use while taking iron.) also, would she have to be on that high a dose, or could it be lower (with a longer treatment time)?

I would push for the sleep study, specifically asking "why do you want to put her on meds that can be difficult to come off of before doing any diagnostic testing?". (antidepressants are useful for lots of things that are not depression, so I wouldn't assume they think she's depressed just because they prescribe a SSRI or SNRI.) I would also push for the testing. Honestly, your doctor is YOUR SERVICE PROVIDER. If he/she isn't providing the service you want, fire them and get another.

That said, you've noted that she's always had negative tests. So why not try the diet - maybe tell your husband "let's try it for two months, see if we see any difference. we'll do our own in-home test"?

thanks for the reply: sorry so late in respondig... i did start her on 325mg of the iron every 3rd day.. with constipation already..there was no way i was going to give her 650 mg. we saw her pedi and she feels that we should go ahead with the 48 EEG to rule out any night seizures ..(my oldest who is now 24 had seizures from 6 months to 3 yrs of age) but she did order a boat load of blood test to be done on this coming friday.. from her cbc w/differential to thyroid to albumin, electrolytes and the proper celiac panel that they run at childrens here in boston.. she also suggested that after the EEG if everything comes out fine (fingers crossed) that we start the elimination diet of gluten to see if there is a difference, so if we notice a difference then re-start her on gluten and see if her symptoms come back.. we are also having a magnesium test as well... it was funny because my pedi mentioned a leaky gut vs celiac as to why she may be anemic.... thanks for the suggestions... i don't wish celiac on my daughter but my gut instict tells me she may have it.. and not with the normal tests... but at least my pedi is on tract,, but the neurologist not so much...

celiackidmom Newbie
celiackidmom
Posted

My 12 year old son was recently diagnosed with celiac and he also had the constipation instead of the diarrhea. When he was little he was a constipated baby and the one and only of my three who woke up several times a night as well. But, what I wanted to share with you is to get Floradix!!! It the BEST iron! NO CONSTIPATION, all natural and they have a gluten free one!! The only problem is the taste. I'm used to it so I just take it plain, but I have to make a fruit smoothie every morning for my son as we are working on his anemia. I knew to go straight to the Floradix as I always got anemic when pregnant and it is the best. Any other iron is terrible for the constipation. Hope that helps...

lizajane Rookie
lizajane
Posted

please try gluten free for her.

one can be gluten intolerant without having celiac. so even if the negative tests are accurate, and i hear they are unreliable in children, she could still be intolerant.

my 5 year old didn't sleep. he had a negative blood test, but i decided to try him gluten free anyway. my blood test was negative, too. (my diagnosis came from the endoscopy.) the only time in his LIFE that he has slept well was the 6 months he was gluten free. and the change was nearly immediate.

my husband talked me into trying him back on gluten and for about a month, we didn't see adverse effects. and then he turned into a nightmare. waking every night, angry all the time, sleepy, miserable, and nasty bathroom visits with very smelly stool and high volume.

he has been gluten free again for a month or two and know HE knows that gluten makes him feel bad. he went back on it so we could officially test him again, and he was still negative. but he is SO MUCH HAPPIER when gluten free. i can't imagine why i would give it to him just because his test said he could have it.

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