Horrible Insomnia Rant (With A Question)

[HopefulMama23]

So, I have been gluten-free for 8 months with great results- all digestive issues are pretty much gone. Only complaint is I miss a good beer. :-)

BUT- my Celiacs diagnosis came hand in had with a Hashimoto's diagnosis, which was based not on bloodwork levels (which have always tested "normal") but on a swollen thyroid three times the size of normal, and covered in nodules. I have now had two episodes of really bad insomnia- the first was few months ago and lasted about three weeks. This one is going on now and has lasted a month so far. What happens is this: I go to bed, and I just lay there. For hours. It's like trying to go to sleep after having 3 cups of strong coffee. It takes me anywhere from 1 hour to 5 hours to fall asleep, and this is EVERY night. I average about 4 hours of sleep a night.

I cut out caffeine when I first went gluten-free. I have tried yoga, gentle stretching, breathing exercises, chamomile tea, a warm bath, exercise, homeopathic remedies, melatonin, valerian, and aromatherapy. NOTHING works.

And here's the worst part: I have tried Ambian. And Xanax. Still didn't work.

My endo says it's anxiety. Now, I will freely admit that after a month of no sleep, my anxiety level is through the roof. But I wasn't anxious about a thing a month ago when this started.

Here are my questions:

Any tips on falling asleep successfully?

Any reason I should NOT believe the celiacs, hashimotos, and insomnia re all inter-related?

My doc gave me a script today for Sonata- if Ambian and Xanax both sisn;t work, should I even bother trying this?

Finally, how "normal" is this? I'm in my 30s. I know insomnia is very common for women, especially as they get older. But every night?

Thanks! I hope my desperation comes though loud and clear.

[pricklypear1971]

There is a link with "wide awake at night" and untreated thyroid disease. Some treated thyroid patients also get insomnia from the medications, and sometimes reducing the dosage helps or switching to a slow-release formula.

On top of that, vitamin deficiencies can lead to insomnia. I was struggling after gluten-free with insomnia and b complex, and cal/mag/vitD supplements helped tremendously. I also have to hit that sleepy window around 9-10 pm for best sleep and not worry if I wake up early. It works out overall, and I feel good in spite of waking early.

I hope this helps.

[HopefulMama23]

Prickly- thank you! Are you saying the b complex helped you? Or caused the insomnia? I take a lot of b vitamins. I wonder if that contributes?

[Jestgar]

Consider other food intolerances. After I removed soy I could sleep through the night for the first time in I don't know how many years.

B complex will wake you up for a while after taking it, so it's better for morning or mid afternoon.

Exercise and melatonin help me if I'm having trouble sleeping, or not sleeping well. I also try to avoid animal protein for dinner.

[HopefulMama23]

I don't eat much soy at all, if any. I do wonder about dairy though?

[Jestgar]

Sleep is so glorious that pretty much anything is worth a try. Skip the dairy for a few days and see if you can break the cycle.

[love2travel]

I understand your frustration! I have had chronic insomnia for my entire adult life but it has become worse the last few years due to severe chronic pain. It is so rare that I sleep well - it probably happens once every ten days or so. When it does I rejoice because the difference it makes is so miraculous. There are many nights I do not even fall asleep at all. The longest I went without sleep was 12 nights. The ER doctor sort of put me into an induced coma for 24 hours to force me to sleep. I've tried Melatonin to no avail, take all the supplements to help (they don't), have a darkening shade, play my white noise machine, have not had any caffeine for several years, etc. I wish I could take a bath but cannot because I cannot get out of the tub due to pain. Insomnia truly is debilitating. And when you have severe pain to begin with, it just gets worse as your body does not recover overnight.

I have eliminated dairy and now soy - still no improvements. But I am willing to give it more time. There has got to be something I am missing somewhere!

Have you tried a sleep study? I wish you all the best with this. Insomnia is truly cruel. I would give almost anything to just sleep.

[HopefulMama23]

I find it to truly be torture- I am so filled with anxiety and trepidation now by bedtime. It's all the same horrible feelings that were stirred up when my celiac symptoms started and I didn't know the cause- anxiety, fear, constant worry, etc. It's so scary to not know what's wrong. And just like with celiacs- where you have to eat, with insomnia, you still have to try to sleep. So there's no avoiding the cause of the anxiety.

What I wonder about the most is why the ambian and Xanax didn't help at all- I've never heard of that.

[AVR1962]

I didn't see anything mentioned about meds you were on. That would be my first thought, that something you are taking, perhaps your thyroid meds are keeping you up. I am also on meds to shrink a thyroid nodule and I am vit b deficient. I take one of my vit B complex at dinner time along with a magnesium tab and a melatonin about a half hour before bedtime and I find I sleep better.

[Jestgar]

Another weird thing that helped me was listening to the Harry Potter books on celiac disease. I knew the story, so no anticipation or need to keep going to see what happens next, and I found the guy's voice very soothing.

Kind of like being read to sleep. And, if you aren't sleeping, at least you're entertained in the dark while lying down.

[Skylark]

Do you have signs of hyperthyroidism? Higher blood pressure, higher resting pulse rate, weight loss? That will keep you awake. Hashis folks can cycle between hyper and hypo- until you end up permanently hypothyroid.

You need to push much harder on your endo, let him/her know it's been cyclic, and that you want to know if it's thyroid related. If you get brushed off, find a better endo for a second opinion.

[HopefulMama23]

Lovetotravel- I'm so sorry you've been dealing with this for so long! Have you done a sleep study? I don't see a therapist presently but I was thinking of trying to see someone who specialises in this, if such a thing even exists. I suppose that will really only help if this is truly due to anxiety.

AVR1962, I'm not currently taking meds for my Hashimoto's- my blood tests have all been within the normal ranges, so we're kind of in a wait and see mode with that. I did call me endo when the insomnia started and she tested my blood- still normal. The only med I am on currently is Yasmin, which is a birth control pill. I have considered the possibility that the birth control could be the cause, but I have been on it before (same brand) for years with no issues. I was on a very low dose antidepressant that i weaned off of completely about a month and a half ago. It was Lexapro, I was on 5 mg (the lowest dose is 10, I was cutting it in half). I had been on it (sort of on and off) for about 6 months. I have thought a lot about whether or not coming off of the Lexapro could have caused this- but the fact that it was now about 7-8 weeks ago makes me wonder if that is possible. I take vitamin B (a complex, folic acid, B12, biotin), vitamin D, Inositol, and fish oil supplements. With the exception of the fish oil and inositol, I have taken the Bs and D for many years. The fish oil and inositol I added to try and successfully wean off the anti depressant, so I have taken them for maybe 6 months now.

These are the possible insomnia causes I have come up with after MUCH thinking and googling:

1. My thryoid. This is of course what would make the most sense to me, but my endo said it was not the case. I see a new endo Monday to get another opinion, but I have to allow for the possibility that she might have been right.

2. Estrogen dominance from being on the BCP. I don't know a lot about this, but I have been taking the pill continuously (skipping the placebo pills) in order to balance my hormones after having my baby and so I suppose the steady dose of estrogen with no break could be a factor. I am stopping this this week and will resume taking the pill as normal with a seven day break every month.

3. Coming off the antidepressant. I thought it was this for sure for a long time, but now that i have been fully off the AD for over 6 weeks (probably more like 7-8), I have my doubts that this could STILL be the casue.

4. Healing, from being gluten-free, causing me to just need less sleep. This was suggested to me, and I suppose its plausible, but I would think this would manifest as me falling asleep just fine and waking up refreshed after 5-6 hours, which is the opposite of what is happening. If this did happen, I would be excited- think of all I could accomplish if I only needed, say 6 hours of sleep, instead of 8! But the fact that it takes me 3-4 hours to fall alseep contradicts this, in my opinion. Plus I am TIRED.

5. Plain old anxiety. I will be the first to admit I have anxiety, especially now that I have not slept well in a month! But I have gone through worse periods in my life and slept fine, and when this all started, everything was reasonably fine and steady in my life (as fine and steady as it can be with kids and a job, etc etc). AND, if it is just anxiety, why wouldn't an ambian or a xanax work?

I am so sorry this is SOOO long. But again, I am desperate- and you guys have always been such a wealth of amazing insight and information.

Thank you!!!

[love2travel]

Hopeful, I did not even fall asleep in my sleep study. They did not have much to study.

I really, really feel for you. Please report back if (I should say WHEN) you get this thing figured out!

[HopefulMama23]

Skylark, you're right. I see a new endo Monday and I'm prepared to push. Hard.

[lucia]

After I went gluten-free, I experienced insomnia similar to what you describe. It went on for months. It was bizarre, and frankly it was hell. (I'm so sorry for you.) I'd never experienced insomnia like it before. It was clearly related to stopping gluten.

This is going to sound very wacky, but it worked for me. My acupuncturist gave me an herbal formula that is sold widely in Chinatown here in NYC. I've seen it sold at groceries. They label it in English "Chinese Foot Powder for Sleep." She instructed me to mix it with warm water and soak my feet in it for 15-20 minutes before bedtime. It worked! The first time I did it I was overcome with sleepiness and went directly to bed and slept deeply. I have to admit, I didn't expect that result at all. It continued to work (not always with such immediate results, but pretty consistently), and I took it for months until suddenly I didn't need it anymore to sleep. Chinese medicine is supposed to work subtly on the body in order to correct imbalances or deficiences, which would explain why I no longer needed it after taking it for months.

I thought I'd just put that out there. Honestly, this experience felt like a miracle at the time. Still kinda does. I have NO idea how to explain it. (My acupuncturist just said, "Sometimes it works for people.") But since you're describing something just like what I went through, I thought you may be able to make use of my story.

[pricklypear1971]

Wow. I need some of that foot powder. Wonder what's in it.,.

As far as taking vitamins they helped me sleep, didn't keep me up.

As far as the thyroid goes insomnia is a CLASSIC symptom, and the problems you are having warrant a trial run. If your doc won't prescribe it, find one who will. You may discover it helps other things too. And get your tests and see what the test says - don't settle for "normal". Then readcabout thyroid disease and see how your labs fall, along with symptoms.

[YoloGx]

Its true, if you can find a way to circumvent the anxiety that should help. Fear can really get in the way. One thing I have often done is read technical manuals at night. Definitely helps one get sleepy pretty fast! Whereas a detective novel will keep me up all night. Am not sure about Harry Potter! Maybe (like how it was suggested) if you already know the story that would help with the sleep?

Another possible is hypnotherapy--especially if you get a disk you can listen to relax your muscles and then go to your favorite safe place (in your imagination).

Since this insomnia is new for you I would consider getting a hormone panel done. It could be the thyroxin is too much for you, or maybe the particular type. I hear selenium helps you convert T4 into T3.

Additionally, many find if they go off all trace gluten they don't need so much thyroxin if any. Going off the gluten can actually eventually cure the Hashimotos, even though your AMA doctor might question that. It happened both to me and a good friend of mine, and many others here on celiac.com.

Its also possible some other hormones could be out of balance like your adrenals.

Am curious too which homeopathics you tried for insomnia. There are a variety given for different causes of insomnia. As I recall I remember one that is good in cases of "fear of never falling asleep." Besides caffeine, mint products will make homeopathics not work--and probably other strong herbs as well.

I also have had to struggle sleeping -- but for me its largely in part due to old injuries and salicylate sensitivity. Fortunately the homeopathics are helping--as has my change of diet. But am still having problems so I am also considering getting a blood panel done by a qualified naturopath since I might be having an adrenal imbalance -- my energy often goes up at night and is low in the morning.

[Kansas]

Try cutting out Dairy. Even with the smallest amount of dairy, I am awake most of the night. I have been gluten free for almost three years, but thought I was still getting gluten as I was sleeping good most nights, but not every night. I also would have a upset stomach some days, but not everyday. I also would have rough cracking skin on my fingers, that would heal, then crack open again. Once in awhile, I would have a loose stool, so with all these symptoms, I though I was still getting glutened and I am extreme in what I put in my mouth, so was puzzled, then after reading on this forum, I stoppped the dairy and it has been great, I am feeling pretty darn good! I feel silly that it has taken three years to figure this out!

[Bubba's Mom]

I've had problems with sleep too. Ambien didn't phaze me except that it gave me a headache the day after taking it. It's maddening. I take a melatonin about 1 hour before bedtime, along with .5mg xanax. If I'm especially "wired" I take 2 generic Benedryl as well.

If your calcium level is low it can cause insomnia. Low calcium levels are common in Celiacs due to malabsorption. Vitamin B6 also aids in sleep. If you are deficient in that one it'll cause sleep problems too.

I've also found since going gluten-free that a very light cc will cause me to be hyper as well, so make sure you are not getting exposed in some way.

You never realize how wonderful sleep is..until you go without it!

Good luck..I hope you can pin down your cause.

Unfortunately, most Dr.s don't study nutrition. They are most likely to write an Rx rather test your vitamin/mineral levels and advise suppliments.

[pricklypear1971]

Oh, if you are interested in pursuing the estrogen thing read one of dr. John Lee's books about natural progesterone cream. It can work wonders.

[love2travel]

Do you need a specific test for Hashimoto's or is the TSH bloodwork the required indicator? Had my physical and bloodwork done in August and was told my thyroid was "normal".

[HopefulMama23]

Oh, if you are interested in pursuing the estrogen thing read one of dr. John Lee's books about natural progesterone cream. It can work wonders.

That's so funny, I JUST bought some natural progesterone cream yesterday after reading about it. This should theoretically by day 1 of my cycle so I won't use it until day 12.

Have you found it helped? I have read that it can help with insomnia.

[HopefulMama23]

Do you need a specific test for Hashimoto's or is the TSH bloodwork the required indicator? Had my physical and bloodwork done in August and was told my thyroid was "normal".

I didn't even have the Hashi's antibodies in my bloodwork, and my TSH, T4 and T3 were all in normal range. My diagnosis was based on the swelling in my thyroid and the nodules. Becuase there were no antibodies, I am still not totally convinced that it wasn't post partum thyroiditis, which I understand can present very similarily to Hashimotos with the swinging in between hyper and hypo stages. I had a baby one year ago and this all started a few months after the birth.

We'll see what the new endo thinks.

[HopefulMama23]

I've had problems with sleep too. Ambien didn't phaze me except that it gave me a headache the day after taking it. It's maddening. I take a melatonin about 1 hour before bedtime, along with .5mg xanax. If I'm especially "wired" I take 2 generic Benedryl as well.

If your calcium level is low it can cause insomnia. Low calcium levels are common in Celiacs due to malabsorption. Vitamin B6 also aids in sleep. If you are deficient in that one it'll cause sleep problems too.

I've also found since going gluten-free that a very light cc will cause me to be hyper as well, so make sure you are not getting exposed in some way.

You never realize how wonderful sleep is..until you go without it!

Good luck..I hope you can pin down your cause.

Unfortunately, most Dr.s don't study nutrition. They are most likely to write an Rx rather test your vitamin/mineral levels and advise suppliments.

Thanks Bubba's Mom- I'm glad to know I'm not the only one Ambien didn't work for. That was a scary moment- while I'm pretty holistically minded I always figured it was a given that if things got bad, I had the sleeping pills to fall back on. Realizing that might not be the case is tough.

[HopefulMama23]

After I went gluten-free, I experienced insomnia similar to what you describe. It went on for months. It was bizarre, and frankly it was hell. (I'm so sorry for you.) I'd never experienced insomnia like it before. It was clearly related to stopping gluten.

This is going to sound very wacky, but it worked for me. My acupuncturist gave me an herbal formula that is sold widely in Chinatown here in NYC. I've seen it sold at groceries. They label it in English "Chinese Foot Powder for Sleep." She instructed me to mix it with warm water and soak my feet in it for 15-20 minutes before bedtime. It worked! The first time I did it I was overcome with sleepiness and went directly to bed and slept deeply. I have to admit, I didn't expect that result at all. It continued to work (not always with such immediate results, but pretty consistently), and I took it for months until suddenly I didn't need it anymore to sleep. Chinese medicine is supposed to work subtly on the body in order to correct imbalances or deficiences, which would explain why I no longer needed it after taking it for months.

I thought I'd just put that out there. Honestly, this experience felt like a miracle at the time. Still kinda does. I have NO idea how to explain it. (My acupuncturist just said, "Sometimes it works for people.") But since you're describing something just like what I went through, I thought you may be able to make use of my story.

I love this story! I just emailed my acupuncturist to ask her what she thought about this. I'll try anything at this point!