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

Coping With Celiac


maggie123

Recommended Posts

maggie123 Newbie

I read of people having insomnia with celiac. Could you please tell me more.

Maggie 123


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



Celiac.com Sponsor (A8-M):



Guest j_mommy

For the first month of being gluten-free I had a really hard time sleeping....I was soooo tired and exhausted all teh time when I was eating gluten. Then I went gluten-free and had all this energy. I got better for me..I cut caffine ect which helped alot.

Kaycee Collaborator

I suffered insomnia through coeliac.

Over the last twenty years my sleeping got worse and worse. It was like I woke up on the hour every hour, and if unlucky I couldn't get back to sleep. It felt like I couldn't get into a deep sleep, always half awake. Then I gave up gluten due to being diagnosed with coeliac. True my sleeping over those first few months got worse. It was more stress that was keeping me awake at that stage. But now, two years on, it is a rare night when I can't sleep. It is wonderful.

If I find I can't sleep I have to ask myself what have I eaten?

Cathy

  • 1 month later...
GFinDC Veteran

I have trouble with insomnia and tend to wake up after about 4 hours of sleep, regardless of when I go to bed. I don't have an answer for how to deal with it. Still trying to figure it out myself. I also have Hashimoto's thyroidits and tend to think it may be related to that. Don't know for sure though.

  • 2 weeks later...
GFinDC Veteran
I have trouble with insomnia and tend to wake up after about 4 hours of sleep, regardless of when I go to bed. I don't have an answer for how to deal with it. Still trying to figure it out myself. I also have Hashimoto's thyroidits and tend to think it may be related to that. Don't know for sure though.

Well, I may have my answer. I had started eating dairy again after years of not. My digestion was so much better after getting off gluten for a few months I figured why not? But ended up not being able to sleep too. Now that I am off dairy again I have been able to sleep fine. I can't think of anything else that would have caused it so I am going with the dairy as the cause for now.

sydneysmommy Apprentice

I have had horrible insomnia since i was a child. age 7 or 8. im now 27 [diagnosed with celiac when i was 21].

the insomnia got better during pregnancy but that is the ONLY time i remember being able to sleep. but i think its just because pregnancy mAKES you tired.

even as a kid, i recall that the slightest noises kept me up or awakened me. when i was 10, i even moved my mattress into my closet so i wouldnt hear my sister talking on the phone through the walls. my own breathing kept me up!

its still bad.

but drs finally put me on lunesta which really helped me out. the only problem is that your body sort of becomes immune and i then began waking up after 4-5 hours of sleep again. so instead of upping the dose, my dr added muscle relaxers to KEEP me asleep.

now that im planning to get pg again, i NEED to get off the medications.

so the insomnia is a bit of a nerve-wracking issue.

~~~~

i have read good things about herbal and vitamin remedies for this however. and that alot of celiacs are also intolerant to other things such as dairy, mint, corn... etc.

so modifying your diet even more can help.

i am working on this myself!

good luck!

  • 4 weeks later...
Beagle Newbie
I have had horrible insomnia since i was a child. age 7 or 8. im now 27 [diagnosed with celiac when i was 21].

the insomnia got better during pregnancy but that is the ONLY time i remember being able to sleep. but i think its just because pregnancy mAKES you tired.

even as a kid, i recall that the slightest noises kept me up or awakened me. when i was 10, i even moved my mattress into my closet so i wouldnt hear my sister talking on the phone through the walls. my own breathing kept me up!

its still bad.

but drs finally put me on lunesta which really helped me out. the only problem is that your body sort of becomes immune and i then began waking up after 4-5 hours of sleep again. so instead of upping the dose, my dr added muscle relaxers to KEEP me asleep.

now that im planning to get pg again, i NEED to get off the medications.

so the insomnia is a bit of a nerve-wracking issue.

~~~~

i have read good things about herbal and vitamin remedies for this however. and that alot of celiacs are also intolerant to other things such as dairy, mint, corn... etc.

so modifying your diet even more can help.

i am working on this myself!

good luck!

I have celiac disease and had a problem waking up 2-3 times a night, but I have found a fabulous solution - melatonin. I take 2-3 mg before I go to bed and get wonderful sleep! My husband takes the same amount, but his daughter takes 6mg, so everyone is different. It is a natural hormone & anti-oxtidant (no other hormone in a persons body is both) produced in the pineal gland, located in your brain. The fact that it is also an anti-oxident means it helps build the immune system, not just aid in sleeping. Some people produce less of this hormone than others, therefore getting less sleep. I don't know if this low production is caused by celiac/gluten intolerance problems, but I do know it helps me sleep.

My husband went without melatonin for two nights in a row and realized it was because he had forgotten to take melatonin. He hasn't forgotten since. I buy it at my local health food store, but it is available at grocery stores as well. I buy 1mg tablets (it also comes in 3mg & 5mg) and for 120 it costs me just under $7.00. I believe it would be well worth the money, considering how much time and effort it takes to narrow down what it causing it. It may just be a low melatonin production due to our problem and not any food item at all, but I am not ruling out the food option either.

Please read the book, "Your Body's Natural Wonder Drug - Melatonin" by Russell J. Reiter Ph.D. and Jo Robinson. It retails for about $23. A friend of mine, who is a fellow celiac, suggested it to me and I will be forever grateful.

Consider these options & you will notice a difference the very first night, I did. Some people require more than others, so exiperiment on what works for you. Oh yeah, there is no toxic amount of melatonin, so don't worry about how much you have to take.

Good luck & sweet dreams!


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



Celiac.com Sponsor (A8-M):



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. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      6

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      6

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - 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?

    4. - 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?

    5. - 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?

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

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748

    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    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

    • 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!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
×
×
  • 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.