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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Please Help Chronic Severe Insomnia
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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.

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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:

http://www.behealthyatwork.com/pdf/Deficiency-Toxicity.pdf

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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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. :)

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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!

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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.

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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.

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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. :(

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