Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Please Help Chronic Severe Insomnia


MarEB

Recommended Posts

MarEB Newbie

I understand why Michael Jackson wanted to be put to sleep. I have been to numerous doctors and natural health specialists and I haven't gotten any relief. I can't sleep. Can't eat. I've lost 20 to 30 pounds over the last six months. This has been going on since the fall of '09, but has gotten progressively worse since April '11. I'm at the end of my rope. I keep thinking that the insomnia is a symptom of something else, but I don't have a clue what that could be. There is autoimmune disease in my family. One sister and mother are celiac, another sister has a thyroid condition called hashimoto's disease (sp). Dad died of a brain tumor. I've tried trazodone, Ativan, bioidentical hormones. My hair falls out in bunches. I've got no energy. I'm a massage therapist, but I don't have the strength to work. I feel like a prisoner. My celiac sister says she's gotten help for several hard-to-diagnose conditions from this site. Please, does anyone have any ideas? This started with peri-menopause. Other than this, my life is great. No other stresses or psychological problems. Thank you in advance for any ideas.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

I strongly suspect nutritional deficiencies. I suppose your doctors have tested you for the most common ones (iron, D, and B12); however, alopecia and insomnia can both be caused by deficiencies in certain B vitamins (B2, B5, Biotin, and folic acid). Take a look at this website and see if certain vitamin/mineral deficiencies describe your condition:

Open Original Shared Link

Regarding the hairloss, a number of us take a B vitamin coenzyme complex (I take three times the dosage on the bottle because I have trouble absorbing B vitamins) and a product called BioSil, which contains silicon.

You may be experiencing malabsorption problems--and, believe me, doctors tend to be clueless about vitamin/mineral deficiencies. You may have to experiment a bit.

bbdailey Explorer

Have you gotten your thyroid checked? I have hashimotos and have had lots of trouble getting to sleep. Also your hairloss matches up with thyroid symptoms.

MarEB Newbie

Thank you. I will look into vitamins/minerals and the website you provided. Right now, I'm having a hard time eating anything. Just got some Ensure and will try that. I'm very grateful for your quick response. It helps to have some new ideas to explore.

MarEB Newbie

My family doc has checked the thyroid and says everything's normal. I went to a doctor who specializes in bioidentical hormones. He put me on armour thyroid. I took that fo two months, instead of levothyroxin, but had to quit because of a racing heart.

Skylark Collaborator

I get insomnia if I don't take fish oil. I have to get at least 1000 mg of EPA/DHA combined in order to sleep normally, which means I usually take the concentrated stuff. I also take a multivitamin/mineral/trace element supplement and I don't sleep as well without it, but it's nothing like the insomnia I get from forgetting fish oil for a few days.

maximoo Enthusiast

have you done a sleep study?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



MarEB Newbie

have you done a sleep study?

I'm looking into it. My insurance will not cover it. Plus, I'm not sure I'd sleep enough consecutive hours in a row for them to get a good reading.

Bubba's Mom Enthusiast

You may need a calcium/magnesium supplement? A deficiency in those can cause sleep problems. Low iron can cause insomnia too.

MarEB Newbie

You may need a calcium/magnesium supplement? A deficiency in those can cause sleep problems. Low iron can cause insomnia too.

I think that's a good idea. I've tried it before, but not consistently. I'll get back on it.

GFinDC Veteran

Hi,

Losing 30lbs is a significant symptom. Have you been tested for celiac disease? Are you on the gluten-free diet?

If haven't been tested you should stay on a regular glutney diet until the testing is done. The test results are even less accurate if you stop eating gluten before hand.

Celiac can cause weight loss and nutritional shortages could explain the hair loss and weakness.

Celiac is hereditary so if another family member has celiac it is more likely you will have it also. It is not an automatic thing though, just a higher chance.

love2travel Mentor

My chronic insomnia is severe like yours. I've had it for years but it is largely due to my severe chronic pain that makes it so hard for me to lie down as it causes so much pain. Even if I lie on a wrinkle I must get up and straighten it out. But I did have insomnia before my accident, too. I have tried everything and the only thing that helps me is a prescription for Zopiclone. I also take muscle relaxants and painkillers. I have been taking Zopiclone for about 15 years and have had zero problems with dependency as I restrict taking it to once a week. I hate to recommend prescription drugs but I was having so much trouble that I went to the ER for injections just to help me sleep - it was that bad. Often I went several nights without even falling asleep (even in sleep study) so I was bumping into walls and such. Doctors have told me I am the worst case of insomnia they have ever encountered. My doctor worried that my organs may begin shutting down from not sleeping so that is why I am on Zopiclone and it is a miracle to me. When I travel I take Ativan to help me relax (i.e. flying) but I reserve it for that only.

My chronic pain doctor told me to take 900-1800 mg of magnesium glycinate which really does help my restless leg syndrome a great deal. If you start magnesium just make sure to titrate up slowly to prevent diarrhea.

I really hope that you find something that helps you. Insomnia affects every aspect of our lives as you know and it can really be extremely debilitating.

MarEB Newbie

Hi,

Losing 30lbs is a significant symptom. Have you been tested for celiac disease? Are you on the gluten-free diet?

If haven't been tested you should stay on a regular glutney diet until the testing is done. The test results are even less accurate if you stop eating gluten before hand.

Celiac can cause weight loss and nutritional shortages could explain the hair loss and weakness.

Celiac is hereditary so if another family member has celiac it is more likely you will have it also. It is not an automatic thing though, just a higher chance.

That test is on the list, for sure. I didn't think I had it since I don't have the symptoms my sister has. But I understand how symptoms vary person to person. Thanks for the info.

MarEB Newbie

My chronic insomnia is severe like yours. I've had it for years but it is largely due to my severe chronic pain that makes it so hard for me to lie down as it causes so much pain. Even if I lie on a wrinkle I must get up and straighten it out. But I did have insomnia before my accident, too. I have tried everything and the only thing that helps me is a prescription for Zopiclone. I also take muscle relaxants and painkillers. I have been taking Zopiclone for about 15 years and have had zero problems with dependency as I restrict taking it to once a week. I hate to recommend prescription drugs but I was having so much trouble that I went to the ER for injections just to help me sleep - it was that bad. Often I went several nights without even falling asleep (even in sleep study) so I was bumping into walls and such. Doctors have told me I am the worst case of insomnia they have ever encountered. My doctor worried that my organs may begin shutting down from not sleeping so that is why I am on Zopiclone and it is a miracle to me. When I travel I take Ativan to help me relax (i.e. flying) but I reserve it for that only.

My chronic pain doctor told me to take 900-1800 mg of magnesium glycinate which really does help my restless leg syndrome a great deal. If you start magnesium just make sure to titrate up slowly to prevent diarrhea.

I really hope that you find something that helps you. Insomnia affects every aspect of our lives as you know and it can really be extremely debilitating.

I can not imagine your pain. You have a much more severe case than I do. Thank you for responding. I have tried Ativan and a couple of other drugs that made me feel horribly depressed the next day. Trazodone worked for awhile, but not much anymore. Thanks for letting me know there's something available as a last resort. I wish you all the best.

Learner01 Newbie

When I started getting wonky symptoms I started a journal. Every once in a while I'll go back and read through the details. It's an eye-opener! I highly suggest you do that. Make sure you date your entry. Note your symptoms and other quality of life points. What you've eaten and how you feel. Note any changes that you've made in your habits. Make a checklist of the things you need to follow-up on, i.e. a thorough thyroid workup (regular thyroid tests may not detect an abnormality), celiac/gluten test, etc. You must be your own health advocate as no one else is living in your shoes. Insomnia is an evil and torturous thing. I hope you find an acceptable resolution.

love2travel Mentor

I can not imagine your pain. You have a much more severe case than I do. Thank you for responding. I have tried Ativan and a couple of other drugs that made me feel horribly depressed the next day. Trazodone worked for awhile, but not much anymore. Thanks for letting me know there's something available as a last resort. I wish you all the best.

It is not easy but I try to remain hopeful and positive (most days, at least!). Too bad that Ativan makes you feel so yucky. I have not yet tried Trazodone because I have heard mixed reviews on it. Maybe it would be worth a try for me. But this combination of muscle relaxants and analgesics seem to be helping me to sleep more but I feel so out of it during the day. I still feel that perhaps trying Zopiclone could really be of benefit to you. My doctors have assured me it is not habit forming (it is not for me).

All the best to you as well as you seek help. Remember there is ALWAYS hope. No matter what. :)

  • 3 weeks later...
newbietlh Newbie

I am currently seeing a Naturopath (ND) for the same issue. So far, I've been tested for allergies, vitamin deficiencies and thyroid issues. All of which I have some of. I am also in the process of collecting saliva samples to test my reproductive hormone levels, cortisol and melatonin. What my treatment plan will end up being, I don't know, but I feel that each little bit of testing is helping. And I am here b/c my regular doctor and insurance wouldn't do the things I needed them to do and simply, didn't understand what I needed or how to do it. I've really had to do a lot of learning on my own and advocating for myself. I suggest two resources that should be a great help to you: The Hormone Diet, by Natasha Turner, ND and the website www.womentowomen.com. Both of these resources talk about the confluences of diet and bodily systems and make recommendations that our regular doctors normally overlook.

So, it could be anything that anyone above mentioned. It could be a combination of things. I just encourage you to think outside the box in terms of seeking help.

Also, as a psychologist, I understand the importance of knowing WHY you aren't sleeping and not just taking some pill to fix it. You start taking some sleeping pill and then you need more and more. If you understand why, you can at least address the root of the problem.

Lastly, I've tried Ashwaganda Root with some success. I took it at night with my calcium/mag supplements. That has really helped me get to sleep a lot better. I still have trouble staying asleep, though. But, I'm working on it!

Good luck to you!

newbietlh Newbie

I second Learner01. The journal idea is helpful. Track water, food, supplements, bowel movements, aches and pains, exercise, sleep, weight, and anything else you can think of. I noticed a few patterns when I did that.

Also, the book I previously recommended, the Hormone Diet, will tell you when and how to get various hormones tested. My doctor didn't keep track of the time of the month, the WNL ranges were not current and he didn't do full panel testing. So, basically, the testing I got done through my regular MD was worthless. Hence my switch to an ND.

RiceGuy Collaborator

The recommendation of magnesium is worth pursuing, as is other nutrient deficiencies. Epsom salt baths are supposed to be helpful too, which is not surprising since Epsom salt is a form of magnesium.

For years I could not sleep well at all. Nothing seemed to help. That was before going gluten-free, but even afterward, sleep wasn't something which I could do effectively. But while addressing other issues, I started taking magnesium and a methylcobalamin (vitamin B12) sublingual tablet. It wasn't long before I was sleeping like never before! Haven't had any trouble sleeping since, and of course I continue the supplements, for that and other reasons.

Vitamin B12 (as well as other B vitamins and nutrients) are necessary for the brain to produce melatonin. And without melatonin, normal sleep/wake cycles are impacted if not impossible. The form I recommend is a sublingual methylcobalamin tablet (not a liquid), with a 5mg potency. Try taking it 60-90 minutes before bedtime. Source Naturals makes one which is gluten-free. You may need to take it more than once per day at first, if your levels are extremely low. Fortunately, B12 has no known level of overdose.

One important point is that blood tests cannot identify a B12 deficiency accurately. The body will rob B12 from organs and tissues in order to maintain the level in the blood. So by the time the blood shows a deficiency, your entire body can be depleted. The body can store vitamin B12 for many years, so it can take that long for symptoms to emerge. In other words, the underlying problem might have been ongoing for a long long time.

Regardless of what any tests say, I'd suggest a gluten-free diet, and the supplements. As was stated, getting tested for Celiac before going gluten-free is important, if you wish a formal diagnosis. But do keep in mind that even the best tests are not particularly accurate enough to rely on. So once you're satisfied that you've gotten all the tests you desire, try a gluten-free diet. The fact that other family members have Celiac says a lot.

Lastly, though I don't recommend this, I'll mention it since nobody else has of yet. There are melatonin supplements available, which you might find necessary at first. But do understand that if it helps, it may mean that your brain doesn't have the nutrients it needs to produce melatonin as it should. So you won't be addressing the real problem by taking melatonin, which will undoubtedly lead to other issues later.

peeptoad Apprentice

Lastly, though I don't recommend this, I'll mention it since nobody else has of yet. There are melatonin supplements available, which you might find necessary at first. But do understand that if it helps, it may mean that your brain doesn't have the nutrients it needs to produce melatonin as it should. So you won't be addressing the real problem by taking melatonin, which will undoubtedly lead to other issues later.

Can you give a little more information about this? I'm about to start taking sublingual melatonin because of chronic insomnia. Are the nutrients you're referring to simply magnesium and B12? I've taken magnesium before (250mg) and it gave me diarrhea, so I quit taking it. I even tried breaking the tablets in half and they still gave me problems. :(

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,259
    • Most Online (within 30 mins)
      7,748

    Tdodge
    Newest Member
    Tdodge
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.