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I Haven't Slept Through The Night In Years!


azmom3

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azmom3 Contributor

I was actually looking at this site because my baby just tested positive for celiac (blood). I stumbled upon the sleep sectioin, not realizing this was even a celiac symptom.

Over the past several years, I can count the times I slept through the night (6+ hours) on 1 hand. I wake up dozens and dozens of times each night, although I'm not sure why...was thinking my back/joint pain. It takes me hours and hours to fall asleep. My most restful time is probably from 4-6 am, although I'm still waking up, it's easier to fall back asleep. I have had back, neck and hip pain for years which has been attributed to car accidents from 20 years ago. I alternate between diahrrea and constipation, but rarely seem "normal." The fatigue is by far my worst symptom with the back pain being a close second. I can barely function every day. I feel like a zombie. I am bothered by loud stuff...tv, talking, toy noises, etc. I get migraine headaches (I think....I've never been diagnosed with them though). They come on sudenly and get so severe. Tylenol/Ibuprofen do nothing to help. The only way to get rid of them is laying down in a quiet, dark room and sometimes they go away by the next day...although I usually have a "sore" head for several more days. Ice on the back of my neck and forehead help a little during these episodes.

Are all these other things symptoms, too by any chance? Also, I was incredibly ill when I was pregnant with this baby (all my pregnancies were rough, requiring IV hydration due to hyperemesis), but this one was especially bad. I was in bed from very early on (before I even had confirmation I was pregnant) until the day I delivered and had a PICC line through the whole thing for fluids and Zofran. I had home healthcare nurses come about twice a week. Could the fact that he is celiac or maybe that I am celiac have anything to do with this? I've always had gluten in my diet and never even heard about celiac until just a few weeks ago.


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covsooze Enthusiast

Hi there :D The sleep problem may or may not be a symptom of celiac disease, but if your child has a positive diagnosis, you should definitely get tested yourself, as it is hereditary.

Hugs

Susie x

CarlaB Enthusiast

I sleep much better now that I'm gluten-free. I used to get up at least once per night, sometimes two or three times. Now I sleep straight through, 8 hours!! :)

The other symptoms could be from the gluten. I had rough pregnancies and dehydrationg problems, too. I couldn't get up from the fatigue when I was pregnant, but I was not made to stay in bed.

oceangirl Collaborator
I sleep much better now that I'm gluten-free. I used to get up at least once per night, sometimes two or three times. Now I sleep straight through, 8 hours!! :)

The other symptoms could be from the gluten. I had rough pregnancies and dehydrationg problems, too. I couldn't get up from the fatigue when I was pregnant, but I was not made to stay in bed.

I wake up all night from back pain and stomach rumbling or distension. It is considerably better since I've gone gluten-free, though not perfect. The back pain I would describe as extremely intense. I, too, had difficult pregnancies, many issues. And I do know about intense pain -gave birth naturally to 10 pound son! I think you should continue to read this forum and also ask your doctor for a complete celiac panel, particularly if you know you have a child with it. There are great people here with so much information; it's been wonderful for me and I've never used a computer much! Good luck!

lisa

azmom3 Contributor
I wake up all night from back pain and stomach rumbling or distension. It is considerably better since I've gone gluten-free, though not perfect. The back pain I would describe as extremely intense. I, too, had difficult pregnancies, many issues. And I do know about intense pain -gave birth naturally to 10 pound son! I think you should continue to read this forum and also ask your doctor for a complete celiac panel, particularly if you know you have a child with it. There are great people here with so much information; it's been wonderful for me and I've never used a computer much! Good luck!

lisa

Thanks for your story, Lisa. It's therapeutic just hearing that you're not alone...sometimes I just question if these things are just normal and I just complain too much. I'm definitely getting tested as are our other children. Yikes about your 10 pound childbirth experience! :o Luckily, my births have all been quick and not too problematic, 1 natural, the other 2 with epidurals (that only worked on 1 side), but all under 4 hours, the last one was only about 20 minutes of intense pain...I count my blessings on this as I've heard horror stories. Hope you continue to feel better!

Lucy

oceangirl Collaborator
Thanks for your story, Lisa. It's therapeutic just hearing that you're not alone...sometimes I just question if these things are just normal and I just complain too much. I'm definitely getting tested as are our other children. Yikes about your 10 pound childbirth experience! :o Luckily, my births have all been quick and not too problematic, 1 natural, the other 2 with epidurals (that only worked on 1 side), but all under 4 hours, the last one was only about 20 minutes of intense pain...I count my blessings on this as I've heard horror stories. Hope you continue to feel better!

Lucy

Thank you, Lucy- the same thoughts to you! I just reread your posts and I have to say, between 4 and 6 AM is my best sleeping time as well!

lisa

rinne Apprentice

I am new to all of this myself and have only been gluten free for three months. I would guess, from someone very inexperienced, that given your symptoms there is a very good chance that it is Celiac or Gluten Intolerance. I have read that diet is a valid diagnositic tool, have you ever gone gluten free?

I confused a lot of my pain with the results of car accidents too, I have also had migraine headaches, arthritis, consitipation and difficulty sleeping.

This is a great forum with lots more knowledgeable people than me, welcome. :)


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azmom3 Contributor
I am new to all of this myself and have only been gluten free for three months. I would guess, from someone very inexperienced, that given your symptoms there is a very good chance that it is Celiac or Gluten Intolerance. I have read that a valid diagnositic tool is diet, have you ever gone gluten free?

I confused a lot of my pain with the results of car accidents too, I have also had migraine headaches, arthritis, consitipation and difficulty sleeping.

This is a great forum with lots more knowledgeable people than me, welcome. :)

I am new to all of this myself and have only been gluten free for three months. I would guess, from someone very inexperienced, that given your symptoms there is a very good chance that it is Celiac or Gluten Intolerance. I have read that a valid diagnositic tool is diet, have you ever gone gluten free?

I confused a lot of my pain with the results of car accidents too, I have also had migraine headaches, arthritis, consitipation and difficulty sleeping.

This is a great forum with lots more knowledgeable people than me, welcome. :)

I have been glutening (I love the made-up words i've been learning here! ) myself for my entire life...never heard of celiac or gluten-free or any of that until just a couple weeks ago, so to answer your question...No, but I am planning to. I'm still trying to get a little more information...this site is incredible..I've learned so much more here so much more quickly than through any of our doctors. I am so ready to get my life back to normal though. This probably sounds strange, but after years and years of problems and not getting any help from doctors and my family thinking I'm a complainer and looking for attention with all my problems, it would be a huge weight lifted off knowing that I had celiac this whole time. Not only can I fix my problems, but I know I'm not crazy. Do you still have any of the symptoms after going gluten-free? Was it really hard to make that transition? Thanks for info!

Rice Cakes Newbie

Insomnia has been a reliable symptom for me. I conclude it is due to the discomfort of this condition, since the rare times when I've gotten rid of the discomfort have been followed quickly by sleep.

Rice Cakes Newbie
Do you still have any of the symptoms after going gluten-free?

Yes, my condition has not improved at all since diagnosis. But I haven't had much time on the diet, and I went undiagnosed for a long time.

Was it really hard to make that transition?

I've only had an easy time because I'm so used to having to change my diet, most people say it's terribly unpleasant. "No pizza?! OMG Ima gonna dieeeeeeeeeeeeeeeee", but see I just want to stop suffering so that's ok. ;)

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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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