Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Can't Buy A Good Night's Sleep


coffeetime

Recommended Posts

coffeetime Explorer

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.


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

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.

maximoo Enthusiast

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

love2travel Mentor

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. :)

eatmeat4good Enthusiast

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.

Open Original Shared Link

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

love2travel Mentor

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.

Open Original Shared Link

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. :)

eatmeat4good Enthusiast

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.


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



Celiac.com Sponsor (A8-M):



love2travel Mentor

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. :)

coffeetime Explorer

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.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,406
    • Most Online (within 30 mins)
      7,748

    Ripken
    Newest Member
    Ripken
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Pablohoyasaxa
      I feel your pain. Grain and gluten intolerant. Hang in there. This forum is very helpful
    • ElisaL
      IDK how common it is but it does happen. I'm celiac, allergic, and intolerant to the fiber in grains. (Fodmaps) So not only do I get sick from cross contamination, also gluten free wheat statch/fiber, and beauty products with wheat will get me. While I don't stop breathing the full body hives and short breath are not fun. Then once I make through that me and the bathroom become reacquaint. Sigh if I didn't feel so much better with the restrictions on my diet I'd feel sorry for myself. Least it makes for some good jokes about how the gremlin that lives in my gut really hates wheat. 
    • Wends
      Hi Dora77. “Questions I Need Help With” “1. Is it realistically safe to eat food my mom cooks…” YES - you wouldn’t be here if it wasn’t for your mother. Trust she still knows how to take the best care of you in her own way. Mishaps and cross contamination may happen - will happen on occasion, in fact - that’s life. But for the bulk of it as long as you’re aware of cc and try to avoid it for the most part, don’t sweat the small stuff! See the gluten free diet as a process. Own the process, Do Not let the process own you! “2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage.” NO - this is OCD brain at its best! Hijacking your thoughts and justifying it because of the very real fear of gluten contamination. That’s OCD all over. Like a devil in the driving seat. Fears that are based on some kind of reality are hard to argue with. Boss it back! Recognise this for what it is. OCD using fear of gluten as its excuse to keep you entrapped. Own the OCD in this scenario, don’t let it own you. Normal cleanliness rules apply. Washing your hands before you handle food you’re putting in your mouth is fine. Washing after the gym is normal. Once daily cleansing wipe of your phone etc. Even if you did go rubbing your hands all over surfaces and licking them there might be a trace exposure to gluten possible. But I’m guessing you don’t usually do that sort of thing. Even if you inadvertently were to ingest trace gluten - it won’t be enough to do damage, no. It takes weeks to months of at least a few hundred milligrams of gliadin daily for the innate immune system followed by the adaptive immune system in coeliac disease to kick in and start producing antibodies and cause villous atrophy. “3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy?” Only biopsy, as the gold standard of diagnosis, can tell for certain if villi have recovered. Having said that video capsule etc. can give an indication of any inflammation. “4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust?” Assuming your employer provides all necessary PPE - appropriate mask and overalls etc. All you can do is take the precautions that are advised according to risk assessments and regulations of the relevant industry governing bodies? (I don’t know what this would be in the USA. Sorry. But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. Having said that, there is nuance and personal tolerance threshold. If you’re super sensitive “may contain gluten” labelling is a godsend. But this kind of labelling is more aimed at informing customers with type 1 food hypersensitivity/ allergy reactions. The company is basically legally covering themselves, because there may be a risk of cross contamination. Not to be confused that it means there is cross contamination. In addition to products being labelled gluten free. Many products that are labelled can still contain gluten by the way - in fact any processed products labelled gluten free can still contain the allowable level of gluten (up to 20 parts per million according to Codex). A study was done not too long ago that showed gluten free processed products such as cereals, breads, flours etc. can and some are in fact contaminated and have above the legal allowable amount of gluten in them. While most gluten free products are fine for most celiac patients and tolerated, highly sensitive patients fail to heal fully if relying on processed gluten free products. The trace gluten exposure adds up for someone eating a typical western diet of gluten free cereal for breakfast, gluten free sandwich for lunch, gluten free pasta or pizza for dinner for example day after day, week after week. This is why, at least in the beginning after diagnosis, the gluten free diet should be one of whole real food - food that does not require a label. Meats, oily fish, eggs, beans, natural gluten free complex carbohydrates and vegetables according to custom and taste. Limit fruit as fructose worsens leaky gut and has been hypothetically linked to increased OCD and ADHD - Professor Richard Johnson published study on this recently. “7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful?” NO and YES. What you listed as your current, limited diet is nutrient poor. Correct it as soon as possible for your own sake and future health! Ditto what others have replied regarding vitamin and minerals that are lacking in malabsorption syndromes like celiacs and need replenishing. Gluten free products are not fortified. You were likely healthier, dare I say it, on a gluten containing diet for this reason. Your brain , and gut for healing and maintenance, needs lots of nourishment from omega 3s, B complex vitamins, folate, B12, iron, selenium etc. Meats, fish, natural fats that come with, do not fear - the brain is made of fat. Limit sugar, seed oils, and high glycemic cereals and fruit like bananas unfortunately as they can cause blood sugar highs and lows that can worsen anxiety in some people. Refined carbohydrates should be limited for the same reason. Fructose and simple sugars in excess feed the unhealthy gut bugs that wreak havoc with anxiety disorders like OCD. White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
×
×
  • Create New...