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Screaming When Waking Up (And Other Stuff) - Celiac?

treyball3

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treyball3 Newbie
treyball3
Posted

So, my 20 month old daughter is giving us a run for our money. Currently, she screams at night when we put her to bed for a few minutes, not too bad. But in the morning, and after naptime, she is a complete nightmare. She takes short naps now, and wakes up way too early in the morning. When she wakes up, she just screams at the top of her lungs. She goes through cycles where sometimes she'll cheer up right away after screaming, but other times she just won't let you put her down without screaming. The last few days have been the latter.

She didn't sleep through the night until she was 16 or 17 months old. She still occasionally will wake up in the middle of the night, which is what we really dread. She'll scream inconsolably for 2+ hours.

We're at our wits ends at this point. We don't know what to do. We're exhausted and just can't wake up to screaming anymore. I thought alarm clocks were bad enough! :)

I'm wondering if sleep problems like this can be caused by celiac? The reason I though celiac is because I recently found out that my aunt and 2 of her daughters, and 2 of her granddaughters all have it and I heard its hereditary. I think a couple other of my cousins have it as well. Some of their symptoms sounded similar to what we've been dealing with.

- bags under her eyes (she gets up to early, so no surprise)

- picky eater quiet often

- small for her age. Our 6 month old son is the pretty much the same weight. She's been falling on the chart the last few checkups.

- loose stools, but not diarrhea

- we went about 6 weeks where she was a complete terror; screaming all day long, not happy. But then recently she's been happy, so we thought maybe it was just teething. the last couple days, she's a terror again. I think she is getting some teeth again, so maybe that's why the all day long terror. But the waking up screaming thing has been every day for months

- absolutely will not sleep away from home

Maybe all of this is typical 20 month old, middle child behavior. But it just seems extreme. We decided to have her checked, so our pedi did a blood test about a month ago. The test was negative. But I've read that the test isn't necessarily reliable at under 2 years of age. I was reading on enterolab's website about some of the tests that they have, and they have a stool test and it explained that since celiac is an intestinal problem, the stool would show problems before it ever made it to the blood. After the negative blood test, my wife thinks we don't need to do further testing, but I'm not convinced. My aunt also said that her family was tested with blood, but they were negative too. They ended up doing a dna test from enterlab and got positive results. Apparently the granddaugthers are completely different people.

Does this sounds like celiac? I mean, besides the last couple days, she's been a real sweetheart (a very petite one), except for waking up screaming in the morning.

Is the stool test worth doing?

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Sesara Rookie
Sesara
Posted

So, my 20 month old daughter is giving us a run for our money. Currently, she screams at night when we put her to bed for a few minutes, not too bad. But in the morning, and after naptime, she is a complete nightmare. She takes short naps now, and wakes up way too early in the morning. When she wakes up, she just screams at the top of her lungs. She goes through cycles where sometimes she'll cheer up right away after screaming, but other times she just won't let you put her down without screaming. The last few days have been the latter.

She didn't sleep through the night until she was 16 or 17 months old. She still occasionally will wake up in the middle of the night, which is what we really dread. She'll scream inconsolably for 2+ hours.

We're at our wits ends at this point. We don't know what to do. We're exhausted and just can't wake up to screaming anymore. I thought alarm clocks were bad enough! :)

I'm wondering if sleep problems like this can be caused by celiac? The reason I though celiac is because I recently found out that my aunt and 2 of her daughters, and 2 of her granddaughters all have it and I heard its hereditary. I think a couple other of my cousins have it as well. Some of their symptoms sounded similar to what we've been dealing with.

- bags under her eyes (she gets up to early, so no surprise)

- picky eater quiet often

- small for her age. Our 6 month old son is the pretty much the same weight. She's been falling on the chart the last few checkups.

- loose stools, but not diarrhea

- we went about 6 weeks where she was a complete terror; screaming all day long, not happy. But then recently she's been happy, so we thought maybe it was just teething. the last couple days, she's a terror again. I think she is getting some teeth again, so maybe that's why the all day long terror. But the waking up screaming thing has been every day for months

- absolutely will not sleep away from home

Maybe all of this is typical 20 month old, middle child behavior. But it just seems extreme. We decided to have her checked, so our pedi did a blood test about a month ago. The test was negative. But I've read that the test isn't necessarily reliable at under 2 years of age. I was reading on enterolab's website about some of the tests that they have, and they have a stool test and it explained that since celiac is an intestinal problem, the stool would show problems before it ever made it to the blood. After the negative blood test, my wife thinks we don't need to do further testing, but I'm not convinced. My aunt also said that her family was tested with blood, but they were negative too. They ended up doing a dna test from enterlab and got positive results. Apparently the granddaugthers are completely different people.

Does this sounds like celiac? I mean, besides the last couple days, she's been a real sweetheart (a very petite one), except for waking up screaming in the morning.

Is the stool test worth doing?

Just to disclaim at he beginning, my 22 month old DS has not received an "official" diagnosis of Celiac's yet, though I hope to get there.

That said, a lot of what you describe resonates deeply with me. He only just STTN for the first time since we went gluten-free and has always been crabby when waking. He also has been falling off his growth chart since at least 9 months and possibly earlier - I pretty much date it to solids introduction. And he has not really had formed bowel movements since a gastrointestinal illness around February.

My ped tested him for cystic fibrosis, intestinal parasites, and "toddler's diarrhea" by eliminating a lot of his fruit intake, and when all those came back negative, we got a referral to a pediatric GI. His initial blood test was negative. However, it was a very incomplete panel, which is what happens with a lot of kids. His biopsy was "inconclusive" in that he has elevated lymphocyte levels in his small intestine, but not high enough to make them happy and no evidence of villi blunting, the classic Celiac marker. So now they are running a better panel of bloodwork, but we had already started a gluten-free diet for a week by the time they took the blood, so I'm not optimistic that we'll get a positive result there. However, they are also at least doing a genetic screening to determine if he has the markers for it.

A number of other issues that he had that I wouldn't have related to possible Celiac before reading this forum: gritty, sandy poops; bloated belly; fussy/high needs since infancy; sensory processing issues; poor sleep habits in general; "hot" sleeper; slow hair growth; possible speech delays; problems with dental enamel/discoloration on teeth; eczema/dermatitis herpeteformis; and I'm sure I'm forgetting some. We have had all except the last 2. So definitely evaluate your overall child's health, decide how important it is to you to pursue a diagnosis, and start planning on going gluten free at the appropriate time (sooner if you're not going the testing route) if you feel that it could help your child.

Good luck!

Oh yes, lactose and fructose intolerance are both often associated with Celiac as well.

mamaupupup Contributor
mamaupupup
Posted

...I wish I had more time to write...here's the quick version:

- You are probably spot on and identifying this really early: be so proud of your mothering!!!

- Find the BEST pediatric GI who is a Celiac researcher ASAP

And, lastly, yes, I had all the wake up screaming...with my twin girls. Yep, twins. Thank God they weren't triplets. I'm still tired. They've just been both diagnosed with Celiac--at 5.5 years old.

tarnalberry Community Regular
tarnalberry
Posted

So, my 20 month old daughter is giving us a run for our money. Currently, she screams at night when we put her to bed for a few minutes, not too bad. But in the morning, and after naptime, she is a complete nightmare. She takes short naps now, and wakes up way too early in the morning. When she wakes up, she just screams at the top of her lungs. She goes through cycles where sometimes she'll cheer up right away after screaming, but other times she just won't let you put her down without screaming. The last few days have been the latter.

She didn't sleep through the night until she was 16 or 17 months old. She still occasionally will wake up in the middle of the night, which is what we really dread. She'll scream inconsolably for 2+ hours.

We're at our wits ends at this point. We don't know what to do. We're exhausted and just can't wake up to screaming anymore. I thought alarm clocks were bad enough! :)

I'm wondering if sleep problems like this can be caused by celiac? The reason I though celiac is because I recently found out that my aunt and 2 of her daughters, and 2 of her granddaughters all have it and I heard its hereditary. I think a couple other of my cousins have it as well. Some of their symptoms sounded similar to what we've been dealing with.

- bags under her eyes (she gets up to early, so no surprise)

- picky eater quiet often

- small for her age. Our 6 month old son is the pretty much the same weight. She's been falling on the chart the last few checkups.

- loose stools, but not diarrhea

- we went about 6 weeks where she was a complete terror; screaming all day long, not happy. But then recently she's been happy, so we thought maybe it was just teething. the last couple days, she's a terror again. I think she is getting some teeth again, so maybe that's why the all day long terror. But the waking up screaming thing has been every day for months

- absolutely will not sleep away from home

Maybe all of this is typical 20 month old, middle child behavior. But it just seems extreme. We decided to have her checked, so our pedi did a blood test about a month ago. The test was negative. But I've read that the test isn't necessarily reliable at under 2 years of age. I was reading on enterolab's website about some of the tests that they have, and they have a stool test and it explained that since celiac is an intestinal problem, the stool would show problems before it ever made it to the blood. After the negative blood test, my wife thinks we don't need to do further testing, but I'm not convinced. My aunt also said that her family was tested with blood, but they were negative too. They ended up doing a dna test from enterlab and got positive results. Apparently the granddaugthers are completely different people.

Does this sounds like celiac? I mean, besides the last couple days, she's been a real sweetheart (a very petite one), except for waking up screaming in the morning.

Is the stool test worth doing?

While it's certainly worth checking on celiac (I'd even just try the diet myself as testing that young is unreliable), but you might want to consider that all of those things are also simply signs of being over-tired. She may still need two naps, she may have trouble making it through the most active brain cycle during a nap and actually be waking up before she should (something my 25mo old does on occasion, and it also makes her VERY challenging if she doesn't go back to sleep). My daughter has always fought sleep, and it takes a lot of work on my part to make sure she gets it (she just spent two hours playing before finally going to sleep for her nap, but she doesn't get to get out of bed until she sleepts). She also doesn't sleep through the night (wakes at least once to nurse and again at least one more time to have a diaper change), and that is not necessarily atypical. But she's always been fairly sensitive and has needed a lot of closeness.

You may also want to consider if the MOTN screaming is night terrors - I think she is right in the age range for those to happen.

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