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carrieanna76

Anyone Recover From Chronic Insomnia After Going gluten-free?

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hi, i'm new to the forum. i was recently diagnosed with gluten sensitivity and i have been gluten free for about three weeks now. i discovered i was gluten sensitive after going to my naturopath for chronic insomnia, which i've had for the past seven years. as of now, i can see no improvement in my sleep and am worried that gluten is not the cause of my insomnia...

so i'm just wondering if any of you suffered from chronic insomnia before going gluten-free, if going gluten-free cured the insomnia and if so, how long did it take after going gluten-free before you got sleep?

thanks so much! i've really enjoyed this site and look forward to hearing from other gluten intolerants.

carrie

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Hi Carrie,

I've had trouble sleeping for years, too. I thought it was just me. I never took any medication for it, but I was tempted sometimes. It wasn't everyday, but at least three times a week. I would go to work a lot with no sleep at all & feel horrible. I also felt a lot of anxiety & brain fog. Now that I've been gluten free for four months. I think it took about a month or more for my insomnia to go away & then I started sleeping so good & I felt so calm. It was wonderful. Then I was getting glutened again two weeks ago & now , of course, along with all the other GI symptoms, I'm having trouble sleeping again. I think it is getting better, but it just takes a while for the body to recover from the gluten. Just make sure you're on a very strict gluten free diet & recheck everything you're taking -vitamins, medication, hand & face lotion. I realized I was getting glutened from my synthriod medication. It was driving me crazy. It was the last item I thought of & as soon as my doctor changed my medicine I started to feel better. But I still having some brain fog & having a hard time falling to sleep. I do listen to soft music & meditation celiac disease's (BelleRuth Naparstek) right before I go to sleep & that does help me a lot. If you think a mediation celiac disease would help you, you might want to try it. You can buy them on (Company Name Removed - They Spammed This Forum and are Banned). I have a few of her celiac disease''s & they helped it really helps me to relax.- not trying to sell you anything, just trying to help. :)

Hang in there. It'll get better soon.

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thanks so much for the advice! it's encouraging to hear that it took a while for your sleep to improve. just curious, what thyroid medication are you taking now? i started taking Levoxyl recently and i've heard it's gluten-free, but not 100% positive. i too have the brain fog and a bit of depression - really hoping to feel like a normal person soon...

thanks again and good luck on your gluten-free journey!

carrie

Hi Carrie,

I've had trouble sleeping for years, too. I thought it was just me. I never took any medication for it, but I was tempted sometimes. It wasn't everyday, but at least three times a week. I would go to work a lot with no sleep at all & feel horrible. I also felt a lot of anxiety & brain fog. Now that I've been gluten free for four months. I think it took about a month or more for my insomnia to go away & then I started sleeping so good & I felt so calm. It was wonderful. Then I was getting glutened again two weeks ago & now , of course, along with all the other GI symptoms, I'm having trouble sleeping again. I think it is getting better, but it just takes a while for the body to recover from the gluten. Just make sure you're on a very strict gluten free diet & recheck everything you're taking -vitamins, medication, hand & face lotion. I realized I was getting glutened from my synthriod medication. It was driving me crazy. It was the last item I thought of & as soon as my doctor changed my medicine I started to feel better. But I still having some brain fog & having a hard time falling to sleep. I do listen to soft music & meditation celiac disease's (BelleRuth Naparstek) right before I go to sleep & that does help me a lot. If you think a mediation celiac disease would help you, you might want to try it. You can buy them on (Company Name Removed - They Spammed This Forum and are Banned). I have a few of her celiac disease''s & they helped it really helps me to relax.- not trying to sell you anything, just trying to help. :)

Hang in there. It'll get better soon.

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Carrie,

I'm wondering if you've seen any improvement in your sleep since you last posted. My son, who has sleep problems, is on day 10 of a Gluten-free Casein-free diet. I know results take a while, but it's hard to be patient!

Kathy

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The best thing I found to cure insomnia is vitamin B12. It makes total sense too, because B12 is vital for the production of serotonin and melatonin, amongst other things. These are critical for regulation of sleep/wake cycles, mood, energy production, and lots more. Also, those with Celiac Disease are very often deficient in B12, so there again it makes sense. I find I sleep quite well now, especially if I take the B12 about 30 minutes or so before I go to bed. The one I prefer is a 5mg methylcobalamin sublingual tablet made by Source Naturals.

Other nutrients are also helpful with sleep. For instance, magnesium is known as the calming mineral. And interestingly, people with Celiac Disease often have a deficiency of magnesium too. A co-enzyme B-complex can also be very helpful, as can a multivitamin/mineral, so I'd suggest these as well.

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Carrie,

Let us know if your sleep improves.

Mine is better now that I am gluten free but I still have issues. I found out I have a lot more food intolerances than gluten so am hoping that by limiting my diet even more that my sleep will continue to get better.

I never know when I go to bed what is in store for me. I have absolutely no sleep pattern. Some nights I go to sleep right away but wake up after a short time and then can't get back to sleep. Some times I am awake most of the night and don't fall asleep until after 3 a.m. Some nights I don't sleep at all. I do get some wonderful nights when I sleep all night. All in all, it is getting better.

I have tried so many approaches with sleep and for now I just stay in bed and rest. I do know that if I get up and do something else, it won't help me get back to sleep later. I am absolutely not able to sleep during the day. I would love a good nap.

Good luck!

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Carrie,

I didn't think you were alone (and the responses above prove that). I too have experienced sleep problems. I have been "keeping" a gluten-free diet since October and besides the digestive improvement I did experience a sleep improvement. B12 is something to keep your eye one, B12 is absorbed in the colon which is why so many individuals who suffer with celiac or gluten sensitivities end up needing supplements.

I wish you luck and hope that you find the rest you need to heal and function. Remember to talk to your doctor so that he/she is aware of your issues. It is the only way (s)he can help.

char

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The best thing I found to cure insomnia is vitamin B12. It makes total sense too, because B12 is vital for the production of serotonin and melatonin, amongst other things. These are critical for regulation of sleep/wake cycles, mood, energy production, and lots more. Also, those with Celiac Disease are very often deficient in B12, so there again it makes sense. I find I sleep quite well now, especially if I take the B12 about 30 minutes or so before I go to bed. The one I prefer is a 5mg methylcobalamin sublingual tablet made by Source Naturals.

Other nutrients are also helpful with sleep. For instance, magnesium is known as the calming mineral. And interestingly, people with Celiac Disease often have a deficiency of magnesium too. A co-enzyme B-complex can also be very helpful, as can a multivitamin/mineral, so I'd suggest these as well.

i thought the b vitamins were responsible for energy and was surprised to read you take them so close to bed time. i feel like i haven't slept for 13 1/2 years now and hated when night time rolled around because i knew it was gonna be a looooong night. i don't want to take any sleeping meds but i will give the b vitamins a try. it would be so great to look forward to bed time and actually get a full night's rest!

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i thought the b vitamins were responsible for energy and was surprised to read you take them so close to bed time. i feel like i haven't slept for 13 1/2 years now and hated when night time rolled around because i knew it was gonna be a looooong night. i don't want to take any sleeping meds but i will give the b vitamins a try. it would be so great to look forward to bed time and actually get a full night's rest!

Yes, B12 can provide an energy boost. I just haven't noticed that, only how I seem to sleep more deeply if I take the B12 towards the end of the day. Of course, once you're levels are up, the effects may be more evened out. That is, perhaps the boost is more noticeable when the deficiency is more severe. I can only guess at that. I suppose it may vary from person to person too.

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@Jackay, Char and Bluebonnet

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Carrie,

I didn't think you were alone (and the responses above prove that). I too have experienced sleep problems. I have been "keeping" a gluten-free diet since October and besides the digestive improvement I did experience a sleep improvement. B12 is something to keep your eye one, B12 is absorbed in the colon which is why so many individuals who suffer with celiac or gluten sensitivities end up needing supplements.

I wish you luck and hope that you find the rest you need to heal and function. Remember to talk to your doctor so that he/she is aware of your issues. It is the only way (s)he can help.

char

Char,

You didn't mention sublinqual B12 supplements but most people using this forum do. If B12 is absorbed by the colon, how does taking it sublinqually help?

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I wonder why so many people who can't have gluten have insomnia. My daughter has had severe debilitating insomnia for about 20 months. We have gone to so many specialists and no one has been able to help her. She went gluten free in October after finding out that she tested positive through Enterolab. We still haven't seen any improvement. She is on several supplements (B12, B6, zinc, b complex to name a few) and nothing is helping her.

It is so bad that I had to pull her out of school last fall and have been teaching her at home. It is even difficult for her to learn at home. She can never fall asleep before 3:00 and often not until 4 or 5. Then she wakes up pretty much every hour and can't get back to sleep. I let her stay in bed until 10:00 but she still isn't getting very much sleep. It is so difficult for her to get through the day.

Any more suggestions?

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Char,

You didn't mention sublinqual B12 supplements but most people using this forum do. If B12 is absorbed by the colon, how does taking it sublinqually help?

The B12 we get from food is absorbed as it passes through the digestive tract. There are actually several steps which need to occur for proper absorption to take place. Eventually, the liver must convert it into a usable form. However, in the case of Celiac Disease, malabsorption apparently effects the absorption of certain nutrients more than others, B12 being one of the more typical ones.

That's when a sublingual form really helps. It gets absorbed directly into the bloodstream, and when taken in the right form (methylcobalamin being one of the best known), it doesn't require conversion by the liver either. So whether you're dealing with malabsorption, Pernicious Anemia, or liver problems, the sublingual B12 will bypass all of that.

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The B12 we get from food is absorbed as it passes through the digestive tract. There are actually several steps which need to occur for proper absorption to take place. Eventually, the liver must convert it into a usable form. However, in the case of Celiac Disease, malabsorption apparently effects the absorption of certain nutrients more than others, B12 being one of the more typical ones.

That's when a sublingual form really helps. It gets absorbed directly into the bloodstream, and when taken in the right form (methylcobalamin being one of the best known), it doesn't require conversion by the liver either. So whether you're dealing with malabsorption, Pernicious Anemia, or liver problems, the sublingual B12 will bypass all of that.

RiceGuy,

Thanks so much for clarifying this. It makes so much sense. I'll see if my doctor sells this and if not, I'll order some online. It will be interesting to see where I come out with my nutritional blood work because B12 (from what I've read) doesn't always show up as being deficient when tested because it draws it from the bones.

Are there other nutrients that are better off taken sublingually?

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i thought the b vitamins were responsible for energy and was surprised to read you take them so close to bed time. i feel like i haven't slept for 13 1/2 years now and hated when night time rolled around because i knew it was gonna be a looooong night. i don't want to take any sleeping meds but i will give the b vitamins a try. it would be so great to look forward to bed time and actually get a full night's rest!

bluebonnet,

Have you tried the B12 yet and had any luck with it?

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The B12 we get from food is absorbed as it passes through the digestive tract. There are actually several steps which need to occur for proper absorption to take place. Eventually, the liver must convert it into a usable form. However, in the case of Celiac Disease, malabsorption apparently effects the absorption of certain nutrients more than others, B12 being one of the more typical ones.

That's when a sublingual form really helps. It gets absorbed directly into the bloodstream, and when taken in the right form (methylcobalamin being one of the best known), it doesn't require conversion by the liver either. So whether you're dealing with malabsorption, Pernicious Anemia, or liver problems, the sublingual B12 will bypass all of that.

Riceguy..thank you. You said that so much better than I could have. Each Dr. tells his or her patients how to take the B12. I was injecting it for a few months and taking supplements. Once the levels got up, I was told to stop the injections and just take the supplements. They will continue to test my levels for a while to see if they change. Depending on the change, a rise or fall the treatment may be tweaked to compensate.

Good Luck.

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@Jackay, Char and Bluebonnet – wow, it’s really fascinating that so many of us “gluten intolerants” have sleep issues. My insomnia has been so bad that it prevented me from going to grad school and I could only hold a part-time job, so needless to say, I feel for all of you! Thanks so much for your comments and suggestions. Around the same time I went off gluten, I also discovered I’m hypothyroid, as well as melatonin, vitamin d, zinc and b12 deficient, so this might be contributing to the insomnia as well… Just out of curiosity, do any of you have thyroid issues?

Thanks to all of you and sweet dreams!

[No known thyroid issues on me.] I've had Non-24 symptoms since possibly birth, definitely since 13+. I went gluten free a year or two ago and have tried orthomolecular solutions, which helped with other things, but no effect on sleep.

I'm glad to hear your melatonin's been tested. Were you also tested for circadian rhythm disorders?

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The best thing I found to cure insomnia is vitamin B12. It makes total sense too, because B12 is vital for the production of serotonin and melatonin, amongst other things. These are critical for regulation of sleep/wake cycles, mood, energy production, and lots more. Also, those with Celiac Disease are very often deficient in B12, so there again it makes sense. I find I sleep quite well now, especially if I take the B12 about 30 minutes or so before I go to bed. The one I prefer is a 5mg methylcobalamin sublingual tablet made by Source Naturals.

Other nutrients are also helpful with sleep. For instance, magnesium is known as the calming mineral. And interestingly, people with Celiac Disease often have a deficiency of magnesium too. A co-enzyme B-complex can also be very helpful, as can a multivitamin/mineral, so I'd suggest these as well.

All of the things you say are true! One other thought is the Candida issue. My son wakes up in the middle of the night( and never seems tired at bedtime) whenever his Candida grows out of control. Our naturapath doctor treats him with an anti-fungal for systemic yeast and he is feeling right as rain. Just food for thought!

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I started sleeping when I sorted out the psych issues, which requires gluten-free, fish oil, and lots of a high-potency vitamin/micronutrient supplement. If I get into gluten or slack off on the handfuls of vitamins and fish oil, I'm lying awake at 4am, anxious and deeply worried about something that would be trivial if I felt normal.

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when I first went gluten free, I had insomnia bad for about a week...and I got the jimmy legs (RLS)....it stopped about about 2-3 nights.

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    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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    • Thank you for your help! Now I am beginning to understand more about this disease.  
    • Becca4130, Cyclinglady is right.  Most have those genotypes but they have found other gene types that doesn't always fit that mold. I haven't always known this (and I am not good at gene tests) I having only been diagnosed on blood serology alone. This verywell article explains it well. https://www.verywellhealth.com/hla-dq8-one-of-the-main-celiac-disease-genes-562571 depending on your ethnicity you might not type out well depending on where your ancestors are from. see their (verywell) paragraph about DQ8 variability by regions of the world. Be your own advocate your nutritionist is right to be cautious. see also this research about variations in genotyping can cause certain world/countries population to fail to show a positive gene typing depending on the region DQ2/DQ8 prevalence in the population mainly in Japan according to verywell. But it has shown up in people of Brazilian (assumingly) Portuguese ancestors as well (different gene typing). https://www.ncbi.nlm.nih.gov/pubmed/21484038 In their conclusion they noted in a subset of brazilians at least the wrong Regional gene typing test (American or European) might effect someone's test's causing a negative gene typing test. quoting CONCLUSIONS: "In this study, celiac disease was associated with the genotypes DQ2 and DQ8. DQ2 predominated, but the distribution of the frequencies was different from what has been found in European populations and was closer to what has been found in the Americas. The high frequencies of the HLA genotypes DQ2 and DQ8 that were found in first-degree relatives would make it difficult to use these HLA genotypes for routine diagnosis of celiac disease in this group." Assuming you don't have any of this mitigating factors then it is uncommon to be diagnosed as celiac disease without these gene types. You might only be able to get the more vague NCGS diagnosis.  But do a month food allergy elimination diet then when you re-introduce you will know if gluten is the culprit. You won't have to get  a doctor's confirmation of what your body already knows. Here is one more research article but a little older so there is probably newer research that might replace it. that might answer your question entitled "HLA-DQ typing in the diagnosis of celiac disease" https://www.ncbi.nlm.nih.gov/pubmed/11922565 I hope this is helpful. ******This is not medical advice. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,  
    • I would put my money on a latex allergy or intolerance.  You can not even bring latex balloons into the hospital anymore, just the Mylar ones.  Did you call to confirm the “gel”.  It makes not mention of a gel on the Amazon or Costco website.  
    • What's got me thinking I might still have to worry about celiac, even though I've been gluten-free for 4 years: https://scdlifestyle.com/2015/11/the-celiac-disease-diet-why-gluten-free-isnt-working-and-what-to-do-instead/ 
    • The test I took said less than 20 U/mL is normal. I had 8. Which I know is less than 20 by far. But all my other levels were less than 1. Maybe I'm just psyching myself out looking for an answer anywhere.
      I guess what I'm wanting to know is if a blood test is completely useless without gluten in the body, or if any sort of elevation can be interpreted as something? I'm just kinda mad that no one told me it only really works when you have been eating gluten.
      I know (from more research) that a biopsy of your small intestine can let you know, too, but that's so expensive, and without a positive blood test I don't think a doctor would refer me.
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