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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Can't Buy A Good Night's Sleep
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9 posts in this topic

I'm so tired, most nights I'm awake by 3:30 and either can't go back to sleep or stumble into and out of sleep for the next hour or so till I'm so frustrated I just get up. For about the last 6 months I'm waking up almost everyday with a headache and my the bones in my legs feel like I've slept on concrete all night :( I'm exhausted when I go to bed but almost dread it knowing how I'm going to feel when I wake up. In my attempt to find any form of quality sleep I've replaced my pillows, bought a thick memory foam mattress pad, tried all the good sleep hygiene recommendations I could find, including blackout curtains, and repainting my room "earthy, neutral tones" I've been gluten-free for 2 years and looked for cc but haven't found any. Throughout my life I've never felt fully rested when I woke up, but this is different, mainly from the pain and total mentally exhaustion. I have thought about trying some form of elimination diet but quiet honestly I'm too brain dead at this point to research. Does anyone have any straight forward suggestions I could try? I take multiple vitamins, fish oil, baby aspirin, and a low dose levothyroxin daily. Thanks in advance for any advice.

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feel for ya. Poor sleep is one of my main symptoms when glutened.

You could eliminate the usual susepcts and eee if things improve.

Soy, dairy, nightshades, corn, eggs, nuts.

Keep the out of your diet for a month. Then try adding one at a time for a week befoe evaluating the success or failure. If there are no problems then add the next food for a week.

A better wy to do it is to start with a small set of foods, say 4 or 5 and eat only those for 2 weeks. Then add foods one at a time again, building up your list of safe foods as you go.

You don't want to add foods too quickly as sometimes the reactions can take several days to become noticeable. And also sometimes it can take weeks for reactions to subside.

You shouldn't eat any processed foods on an elimination diet. You need to keep things simple. Processed foods have so many ingredients it is nigh impossible to pick one out that is causing a problem.

A starting list of foods could be bananas, apples, lamb, tea, salt. And you add from there slowly. Your starting list of foods can be anything you want, but should not include any of the common problem foods or the top 8 food allergens. Remember everything counts, including vitamin pills etc. Keep a food diary as you go and note your symptoms / how you are feeling in it each day.

An elimination diet is not about losing weight, so you can have as much of the foods in your plan as you want.

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you might want to go for a sleep study. Could be something other than what you eat like sleep apnea.

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I sure feel for you and can relate. I have suffered from horrific insomnia for many years, sometimes not falling asleep at all the entire night, mainly due to chronic pain. There are times I would be willing to give almost anything to sleep as well as my husband does. I sleep well so rarely that I celebrate the times that I do.

Having said that, my chronic pain management doctor recommended for pain that I go on magnesium glycinate (it absorbs very well) 900-1800 mg per day, B12 sublingual, B complex, D3 (gels), Omega 3 (from a fish source), probiotics and Zinc. I do find that the magnesium really decreases my restless leg syndrome and now after about nine months my vitamin levels are smack dab in the middle of the normal range so I am pleased. I recently began taking a daily prescription muscle relaxant (Flexeril) that has saved my life the last week - hopefully the effects will last. I have also been on a prescription sleeping pill (Zopiclone) that I take once a week for many years. Prior to this past week I normally wake up at least 50 times per night because it is so difficult to lie down with this pain. I would get up and walk around as I could not take it. I actually could count on both hands how many great sleeps I have had in the last 20 years since becoming an adult. That is how memorable they were!

I tried eliminating soy, nightshades, etc. but it did nothing for me but it certainly may for you! My chiro suggested eliminating aspartame which I have done.

Perhaps it is time for you to discuss prescriptions with your doctor. As much as I dislike pill pushing it came to the point where I was barely functioning due to pain and insomnia. In order for pain management one must sleep to replenish muscles and everything else.

I really hope that you can determine the culprit because sleep is so incredibly important. Good luck with this! Please keep us updated. :)

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The red flag for me is the baby aspirin. You may be sensitive to salicylates or allergic to aspirin and not know it. It can cause fatigue, bone and muscle pain because it can interfere with your calcium and metabolism...but only if you are not able to metabolize it. It also disturbs sleep. I was very sick for a long time and took Ibuprofen for the leg pain and headaches. Years later while googling for symptoms I found that 1 in 100 are allergic or sensitive it aspirin and the symptoms I had were consistent with Chronic Aspirin Poisoning. From my baby aspirin a day and the Ibuprofen for the pain. God...I almost killed myself.

Read about Salicylates and see if you suspect this for yourself or not. It may not be the case for you...but just in case it is...I wanted you to know.

http://salicylatesensitivity.com/

My sleep improved and bones stopped aching and chronic migraine headaches disappeared when I stopped ingesting aspirin and Ibuprofen.

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The red flag for me is the baby aspirin. You may be sensitive to salicylates or allergic to aspirin and not know it. It can cause fatigue, bone and muscle pain because it can interfere with your calcium and metabolism...but only if you are not able to metabolize it. It also disturbs sleep. I was very sick for a long time and took Ibuprofen for the leg pain and headaches. Years later while googling for symptoms I found that 1 in 100 are allergic or sensitive it aspirin and the symptoms I had were consistent with Chronic Aspirin Poisoning. From my baby aspirin a day and the Ibuprofen for the pain. God...I almost killed myself.

Read about Salicylates and see if you suspect this for yourself or not. It may not be the case for you...but just in case it is...I wanted you to know.

http://salicylatesensitivity.com/

My sleep improved and bones stopped aching and chronic migraine headaches disappeared when I stopped ingesting aspirin and Ibuprofen.

That is very interesting! I have never been on aspirin of any kind myself but this certainly is great advice for the OP. It would be exciting if this is it as it would be easy to remedy. I sure do hope so! I am very glad that you were able to determine what it was for you. :)

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Thanks for saying that Love2Travel. I sometimes think I'm sounding like a whacko when I implicate or suspect salicylates for others. So I appreciate your comment.

I might add that I was diagnosed with fibromyalgia and they told me to take Ibuprofen every 4 hours. I gained an enormous amount of weight, had muscle wasting, fatigue and heart palpitations in addition to disturbed sleep. My point is that it really was not fibromyalgia at all. It was Celiac and Salicylate Sensitivity. Aspirin interferes with protein metabolism and therefore your muscles waste away and it interferes with calcium so your bones waste away. Add that to the Celiac malabsorption and I was a hot mess for a lot of years.

Now I sleep well, have muscle definition and can function all day with no fatigue. Unbelievable relief to me. So I like to share it with others. Thank you for the encouragement.

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Thanks for saying that Love2Travel. I sometimes think I'm sounding like a whacko when I implicate or suspect salicylates for others. So I appreciate your comment.

I might add that I was diagnosed with fibromyalgia and they told me to take Ibuprofen every 4 hours. I gained an enormous amount of weight, had muscle wasting, fatigue and heart palpitations in addition to disturbed sleep. My point is that it really was not fibromyalgia at all. It was Celiac and Salicylate Sensitivity. Aspirin interferes with protein metabolism and therefore your muscles waste away and it interferes with calcium so your bones waste away. Add that to the Celiac malabsorption and I was a hot mess for a lot of years.

Now I sleep well, have muscle definition and can function all day with no fatigue. Unbelievable relief to me. So I like to share it with others. Thank you for the encouragement.

You are definitely NOT a whacko! Not even close. :lol: I was diagnosed with fibromyalgia, too, and wonder about it at times. However, I still have severe chronic pain from an accident four years ago but the last two years (especially this past year) the pain has changed somewhat. It feels like I have been hit by a truck. No, wait - a big ship - at full speed. Every day. It is surprising to me that my body is not black and blue from bruises because that is how I feel. It hurts to put on and wear clothes. When there is a wrinkle in my bed sheets it drives me crazy until I get up and fix it. It is just so darned hard to get all comfy! And of course muscle wasting is happening like mad. I desperately hope that clears up once I am off gluten longer. I have been soooooo strict for nine months with zero improvement (except as I mentioned the magnesium for RLS). Maybe the one year mark will do it! My dietitian said it may take me up to two years for that muscle stuff to improve. Meanwhile, I am walking and doing what I can to help myself.

Man, it makes me happy that you have muscle definition and can function well! Sounds sorta like a miracle. ;) This is such good news and I hope others see this and try it. :)

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Thanks so much for all the wonderful suggestions especially the elimination plan and the possible link to salicylates. I can't do much about the baby aspirin until I speak to my cardiologist because of the weird heart rhythm I've had to deal with--evidently the baby aspirin will help in the prevention of a stroke? I plan on beginning the elimination diet today in hopes it helps. In some ways that should make my life easier--you don't have to think about what to eat, the list is so short it's easy to narrow down :P If these fail I would possibly consider adding on a med but hope to avoid that if at all possible. Thanks again for all the advice, I guess I should consider it darkness at the end of the tunnel--especially at 3 a.m. LOL Happy New Year Everyone==May we all find peace and healing this year.

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    • Yes I made it  Welcome Lakme, you've found a great community and resource and I'm sure myself and Ennis won't be the only ones that recognise elements of our own experiences in your account.  In addition to the links Ennis sent you above and the stickied forum faq, I tried putting down some info that may be useful to people just realising they may have an issue with gluten, you can find it in this thread:    Reading your account you do tick a lot of the boxes and perhaps you have found the underlying cause. As that thread explains however, we can't diagnose you, if you want answers you'll need to be eating gluten in order for the tests to work. I know this is probably the last thing you want at the moment, but do read the thread and think about it. You're young and that diagnosis could prove useful for a number of reasons in the years ahead. The longer you leave it, the more of a challenge the gluten challenge may prove.  Out of interest how long since you started on the diet and have you noticed any change in symptoms? You may want to consider keeping a journal, it can be very difficult to track the neuro type symptoms in particular, a written account helps you do that and tracking progress can help with anxiety issues and depression too. I get these too. It's not formally diagnosed, like you I had a physical exam of the eye which failed to show anything, but I believe it to be optic neuritis. It's vastly improved since my diet change, as has an awful lot of other stuff.  So if you're celiac or non celiac gluten sensitive you will hopefully see similar improvements in the weeks, months and even years ahead.  I wish you the best of luck.  Matt
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