Insomnia help

[hjayne19]

Hi! I am a recently diagnosed celiac and my first post here. 
 

hoping for some help. I initially didn’t have any gastric symptoms before diagnosis. Mostly night sweats almost every night and bad insomnia. Sometimes 1-3 hours before falling asleep but mostly waking at 4 am and not able to fall asleep. I felt like a zombie. I have also had low Ferratin for years. Sleeping got a little better I also realized I wasn’t eating enough carbs after working with a dietician. 
 

it’s been 3 months gluten free. I definitely am on the more sensitive side I would say. I get really bad panic/doom anxiety which was bad before diagnosis and has since improved but comes in waves. Now my insomnia has been bad again and looking for some advice. I try to keep a strict routine morning and night. But can’t seem to turn my brain off even though I’m exhausted. 
 

Anyone else going through something similar? 

[trents]

Welcome to the celiac.com community, @hjayne19!

Because of the damage done to the villous lining of the small bowel by celiac disease's inflammatory process, absorption of nutrients from our diet is generally compromised and over time it is typical for those with celiac disease to develop nutritional deficiencies. Your low ferritin is evidence of that.

We generally advise those who have been newly diagnosed to invest in some high quality and high potency gluten-free vitamin and mineral supplements to address this. We're talking about more than a multivitamin. We usually advise B-complex, D3 (5-10k IU daily), zinc, and magnesium glycinate. In particular, magnesium can be helpful for sleep issues and the glycinate form is important as it is assimilates much better than a lot of common forms you see on supermarket shelves which are formulated more for shelf-life than the are for assimilation. Has your ferritin rebounded yet? You may also need an iron supplement if you aren't on one already.

Do you have Costco stores near you? Costco's Kirkland Signature brand and Nature Made brand of vitamins and supplements are good quality, economical choices and will be labeled gluten-free on the packaging if they are.

[hjayne19]

45 minutes ago, trents said:

Welcome to the celiac.com community, @hjayne19!

Because of the damage done to the villous lining of the small bowel by celiac disease's inflammatory process, absorption of nutrients from our diet is generally compromised and over time it is typical for those with celiac disease to develop nutritional deficiencies. Your low ferritin is evidence of that.

We generally advise those who have been newly diagnosed to invest in some high quality and high potency gluten-free vitamin and mineral supplements to address this. We're talking about more than a multivitamin. We usually advise B-complex, D3 (5-10k IU daily), zinc, and magnesium glycinate. In particular, magnesium can be helpful for sleep issues and the glycinate form is important as it is assimilates much better than a lot of common forms you see on supermarket shelves which are formulated more for shelf-life than the are for assimilation. Has your ferritin rebounded yet? You may also need an iron supplement if you aren't on one already.

Do you have Costco stores near you? Costco's Kirkland Signature brand and Nature Made brand of vitamins and supplements are good quality, economical choices and will be labeled gluten-free on the packaging if they are.

Hi @trents

Thanks for the reply. I appreciate it. I have been on an iron supplement for 4 years. (Started at Ferratin at 6) and has always sat around 20-30s. I also have been a high level athlete so I’m sure that doesn’t help. I will sometimes get readings around 50 but haven’t stopped my supplement so assuming it can be from taking it the day before.  Also get muscle twitches too which maybe is pointing to some other deficiency. 
 

My magnesium vitamin B and D were all normal right before going gluten free but I’m also reading more about zinc and the different types of b vitamins that may affect some symptoms as well. So will have to look into that. When can iron stores expect to replenish? Does it take awhile? 

[trents]

When you say "vitamin B" was normal? Which vitamin B are you referring to? Typically, physicians will only check for B12 deficiency because it can connect to iron deficiency via something called "pernicious anemia". But all the B vitamins work together in a synergistic fashion. That's why we recommend a high potency B-complex. And D3 is turning out to be much more important than we ever realized. In many ways, it is a "master vitamin". And in the modern world where we spend much more time indoors than our ancestors did, we often don't get enough of it, especially if we live in northern latitudes. And it's also true that "normal" levels may not be the same as optimum levels. 

Ferritin is an iron storage protein. The body can rob from storage in order to maintain immediate blood levels of iron so, yes, ferritin can take longer to rebuild than hemoglobin counts. Your ferritin levels are low end of normal.

[hjayne19]

18 minutes ago, trents said:

When you say "vitamin B" was normal? Which vitamin B are you referring to? Typically, physicians will only check for B12 deficiency because it can connect to iron deficiency via something called "pernicious anemia". But all the B vitamins work together in a synergistic fashion. That's why we recommend a high potency B-complex. And D3 is turning out to be much more important than we ever realized. In many ways, it is a "master vitamin". And in the modern world where we spend much more time indoors than our ancestors did, we often don't get enough of it, especially if we live in northern latitudes. And it's also true that "normal" levels may not be the same as optimum levels. 

Ferritin is an iron storage protein. The body can rob from storage in order to maintain immediate blood levels of iron so, yes, ferritin can take longer to rebuild than hemoglobin counts. Your ferritin levels are low end of normal.

Hi @trents thanks so much for the insights this helps alot. 
 

These were my metrics at celiac diagnosis. In which my diet has since changed over the past 3 months

Magnesium: 0.80 mmol/L

Vitamin B12: 1021

Vitamin D (25-OH): 102.8

I would say I do get tired after eating more carbs and the only thing that really helps me fall asleep with insomnia is if I eat a banana or a snack. I have a follow up appointment soon so will look into those other B vitamin levels. 

[cristiana]

Hi @hjayne19

It sounds as if your insomnia is closely linked to your anxiety.  I had awful anxiety at diagnosis, and that feeling of doom that you describe.   My other symptoms were racing thoughts, and a tangible sensation of a weight bearing down on my shoulders, even if I was feeling perfectly well and happy - it would just hit me.  I then got a phobia to make things worse, linked to the fact that I had was suffering hypnopompic hallucinations (brief hallucinations on waking).  That was weird but I later learned they aren't all that uncommon, especially with people who suffer from aura migraines.  

In fact I felt so unwell that I didn't even recognise it as 'anxiety'.  I remember googling my various symptoms and it was only that that  made me realise I was suffering from anxiety, which was nothing like 'feeling a bit nervous before taking an exam' or , say, making a speech.  This was a whole new ball game.

As I came off gluten and healed, the anxiety started to get less and less.  It is not uncommon for coeliacs to have anxiety on diagnosis, so I hope that is reassuring to you.   And deficiencies can make it worse, or cause it, so are definitely worth investigating in further depth if you can.   There is certainly a big difference between 'normal' levels and 'optimum', as @trents says, and this excerpt from a British website and explains how with B12,, for example,  a normal level in one person can represent a deficiency in another:

In the UK, normal B12 levels vary slightly by lab but generally, above 200 ng/L is considered sufficient, 100-145 ng/L indicates possible deficiency, and below 100 ng/L suggests likely deficiency, though levels between 146-200 ng/L may still warrant treatment if symptoms are present, as per North Bristol NHS Trust and NICE guidelines

In fact, I understand levels are set much higher in other countries, such as Japan.  When I started to supplement B12 with high dose sublinguals I began to feel better, even though at diagnosis my levels were considered 'low normal'.   

I too had a lot of muscle twitching which was likely due to deficiencies, but of course if someone has a lot of adrenaline in their system it will only make twitching worse.  I remember reading on this forum one should take magnesium tablets, and it did really help.  As a sportsperson you might like to try throwing a good handful of Epsom salts into a lukewarm bath, and have a soak for 20 mins, as it can be absorbed through the skin.  But be careful as you leave the bath, it can make you woozy!

Lastly, to address the anxiety,  I found Dr Steve Llardi's book, albeit on Depression, incredibly helpful.  The Depression Cure: The Six Step Programme to Beat Depression Without Drugs.    Dr Llardi outlines a step-by-step plan for recovery from depression, which focuses on six key lifestyle elements that have largely disappeared in healthy doses from modern life:  physical exercise,  omega-3 fatty acids,  natural sunlight exposure,  restorative sleep,  social connectedness, and meaningful, engaging activity.    The other book (and there is a website) which helped me understand anxiety and recover is Paul David's, At Last a Life, written by a one-time sufferer.  I live in the UK and if I could award a knighthood to anyone in this country, it would be to Paul.  I am so grateful that these books crossed my path.  

Anyway, sorry for the length of this post.  I hope something might be of help.

Cristiana

 

Edited January 3 by cristiana

[trents]

One thing to keep in mind is that it's pretty safe to take a B-complex since B vitamins are water soluble. You just pee out any excess. 

[hjayne19]

21 minutes ago, cristiana said:

Hi @hjayne19

It sounds as if your insomnia is closely linked to your anxiety.  I had awful anxiety at diagnosis, and that feeling of doom that you describe.   My other symptoms were racing thoughts, and a tangible sensation of a weight bearing down on my shoulders, even if I was feeling perfectly well and happy - it would just hit me.  I then got a phobia to make things worse, linked to the fact that I had was suffering hypnopompic hallucinations (brief hallucinations on waking).  That was weird but I later learned they aren't all that uncommon, especially with people who suffer from aura migraines.  

In fact I felt so unwell that I didn't even recognise it as 'anxiety'.  I remember googling my various symptoms and it was only that that  made me realise I was suffering from anxiety, which was nothing like 'feeling a bit nervous before taking an exam' or , say, making a speech.  This was a whole new ball game.

As I came off gluten and healed, the anxiety started to get less and less.  It is not uncommon for coeliacs to have anxiety on diagnosis, so I hope that is reassuring to you.   And deficiencies can make it worse, or cause it, so are definitely worth investigating in further depth if you can.   There is certainly a big difference between 'normal' levels and 'optimum', as @trents says, and this excerpt from a British website and explains how with B12,, for example,  a normal level in one person can represent a deficiency in another:

In the UK, normal B12 levels vary slightly by lab but generally, above 200 ng/L is considered sufficient, 100-145 ng/L indicates possible deficiency, and below 100 ng/L suggests likely deficiency, though levels between 146-200 ng/L may still warrant treatment if symptoms are present, as per North Bristol NHS Trust and NICE guidelines

In fact, I understand levels are set much higher in other countries, such as Japan.  When I started to supplement B12 with high dose sublinguals I began to feel better, even though at diagnosis my levels were considered 'low normal'.   

I too had a lot of muscle twitching which was likely due to deficiencies, but of course if someone has a lot of adrenaline in their system it will only make twitching worse.  I remember reading on this forum one should take magnesium tablets, and it did really help.  As a sportsperson you might like to try throwing a good handful of Epsom salts into a lukewarm bath, and have a soak for 20 mins, as it can be absorbed through the skin.  But be careful as you leave the bath, it can make you woozy!

Lastly, to address the anxiety,  I found Dr Steve Llardi's book, albeit on Depression, incredibly helpful.  The Depression Cure: The Six Step Programme to Beat Depression Without Drugs.    Dr Llardi outlines a step-by-step plan for recovery from depression, which focuses on six key lifestyle elements that have largely disappeared in healthy doses from modern life:  physical exercise,  omega-3 fatty acids,  natural sunlight exposure,  restorative sleep,  social connectedness, and meaningful, engaging activity.    The other book (and there is a website) which helped me understand anxiety and recover is Paul David's, At Last a Life, written by a one-time sufferer.  I live in the UK and if I could award a knighthood to anyone in this country, it would be to Paul.  I am so grateful that these books crossed my path.  

Anyway, sorry for the length of this post.  I hope something might be of help.

Cristiana

 

Hi @cristiana

 

Thank you so much for your reply. This is so helpful. I definitely suffer from anxiety mostly related to health. Brain fog definelty doesn’t help this when it comes. I find my 4 am wake ups are potentially more food related if that’s a possibility (eating enough carbs with protein and fats) and if I eat a small snack before bed to hold throughout the night. I just haven’t been able to help the sudden increase in more days where I can’t fall asleep for hours - it’s those racing thoughts like you describe. I feel like a machine that’s running and can’t shut down. 
 

I will try the epsom salt bath that’s a great suggestion. I think I’m probably working through some other food triggers that may be contributing as well with brain fog. 
 

Anyways sorry to go off. It feels so reassuring finding this community and being able to chat with others. I was definitely feeling a bit crazy until I realized there are many others going through the same thing. 

[knitty kitty]

@hjayne19, welcome to the forum.  

Sorry to hear you're having a bumpy start in your journey.  Let's see if we can smooth the way a bit for you.

To correct anemia, more than just iron and B12 supplements are needed.  Other B vitamins including Folate B 9, Riboflavin B2, Pyridoxine B 6 and Thiamine B 1 are needed.  

Wheat flour (and other products containing gluten) are mandated to have vitamins and minerals added to them to replace the vitamins lost in processing.  Gluten free processed foods are not required to have vitamins and minerals added to them.  Now that you are gluten free, you must get your vitamins and minerals from a nutritionally dense diet.  I'm glad to hear a dietician is helping with that.  However, newly diagnosed celiac patients tend to have subclinical deficiencies and absorption problems, so adding a B Complex supplement is beneficial.  The B vitamins are water soluble and easily excreted by the kidneys if not needed.  

I had terrible night sweats, but correcting a severe Vitamin D deficiency cleared that up quickly.  Optimal Vitamin D levels are between 75 and 100 ng/mL.  Vitamin D levels should be corrected quickly with high doses.  Vitamin D helps regulate the immune system.  Your Vitamin D level was affected and falsely elevated because you were taking a Vitamin D supplement.  The bloodstream is a transportation system and not a reflection of the amount inside cells where the vitamins are used.  Same thing with your B12 and iron levels.  One should be off supplements for eight to twelve weeks before blood tests to look for deficiencies.  

Blood tests for B vitamins are not accurate. Doctors don't agree on optimal levels or even minimum levels required to prevent illness.  Blood levels don't reflect how much is inside cells where the vitamins are utilized.  One can have "normal" blood levels, but still have deficiency symptoms within organs and tissues before blood levels change.  This is especially true if Thiamine B 1.  

Athletes require more Thiamine than people less active.  We need more Thiamine when we are physically ill, emotionally stressed and physically active.  We need more Thiamine when we eat a diet high in carbohydrates.  The more carbs we eat, the more Thiamine we need.  

Anxiety is an early symptom of insufficiency of many of the B vitamins.  The eight B vitamins work together in concert, so the insufficiency symptoms tend to overlap.  My anxiety resolved after taking a B Complex and additional Thiamine in the forms Benfotiamine (shown to promote intestinal healing as well as enhanced athletic performance and recovery time).

My insomnia and the racing thoughts keeping me awake also resolved with additional Thiamine in the form Thiamine TTFD (tetrahydrofurfuryl disulfide).  This TTFD form of thiamine, along with Neuromag, a form of magnesium, really has helped with brain function, anxiety and insomnia.  Don't take Thiamine close to bedtime as it may keep you too alert or energetic to sleep.  Take in the morning, and at lunch, but not after supper.  

I also have taken Tryptophan and Lysine as well as Theanine, all essential amino acids, that our bodies use to relax, heal and sleep.  Passion flower tea or supplements also aid in getting sleepy without feeling groggy the next morning.  Chamomile tea or Oolong also help with insomnia.

Interesting Reading:

Effect of physical activity on thiamine, riboflavin, and vitamin B-6 requirements

https://pubmed.ncbi.nlm.nih.gov/10919966/

The effects of endurance training and thiamine supplementation on anti-fatigue during exercise

https://pmc.ncbi.nlm.nih.gov/articles/PMC4241913/

Effects of thiamine supplementation on exercise-induced fatigue

https://pubmed.ncbi.nlm.nih.gov/8815395/

Exploring the Relationship between Micronutrients and Athletic Performance: A Comprehensive Scientific Systematic Review of the Literature in Sports Medicine

https://www.mdpi.com/2075-4663/11/6/109

Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet

https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/

Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet

https://pubmed.ncbi.nlm.nih.gov/19154566/

Nutritional Consequences of Celiac Disease and Gluten-Free Diet

https://www.mdpi.com/2036-7422/15/4/61

Impact of a Gluten-Free Diet in Adults With Celiac Disease: Nutritional Deficiencies and Challenges

https://pmc.ncbi.nlm.nih.gov/articles/PMC11692684/

[hjayne19]

11 hours ago, knitty kitty said:

@hjayne19, welcome to the forum.  

Sorry to hear you're having a bumpy start in your journey.  Let's see if we can smooth the way a bit for you.

To correct anemia, more than just iron and B12 supplements are needed.  Other B vitamins including Folate B 9, Riboflavin B2, Pyridoxine B 6 and Thiamine B 1 are needed.  

Wheat flour (and other products containing gluten) are mandated to have vitamins and minerals added to them to replace the vitamins lost in processing.  Gluten free processed foods are not required to have vitamins and minerals added to them.  Now that you are gluten free, you must get your vitamins and minerals from a nutritionally dense diet.  I'm glad to hear a dietician is helping with that.  However, newly diagnosed celiac patients tend to have subclinical deficiencies and absorption problems, so adding a B Complex supplement is beneficial.  The B vitamins are water soluble and easily excreted by the kidneys if not needed.  

I had terrible night sweats, but correcting a severe Vitamin D deficiency cleared that up quickly.  Optimal Vitamin D levels are between 75 and 100 ng/mL.  Vitamin D levels should be corrected quickly with high doses.  Vitamin D helps regulate the immune system.  Your Vitamin D level was affected and falsely elevated because you were taking a Vitamin D supplement.  The bloodstream is a transportation system and not a reflection of the amount inside cells where the vitamins are used.  Same thing with your B12 and iron levels.  One should be off supplements for eight to twelve weeks before blood tests to look for deficiencies.  

Blood tests for B vitamins are not accurate. Doctors don't agree on optimal levels or even minimum levels required to prevent illness.  Blood levels don't reflect how much is inside cells where the vitamins are utilized.  One can have "normal" blood levels, but still have deficiency symptoms within organs and tissues before blood levels change.  This is especially true if Thiamine B 1.  

Athletes require more Thiamine than people less active.  We need more Thiamine when we are physically ill, emotionally stressed and physically active.  We need more Thiamine when we eat a diet high in carbohydrates.  The more carbs we eat, the more Thiamine we need.  

Anxiety is an early symptom of insufficiency of many of the B vitamins.  The eight B vitamins work together in concert, so the insufficiency symptoms tend to overlap.  My anxiety resolved after taking a B Complex and additional Thiamine in the forms Benfotiamine (shown to promote intestinal healing as well as enhanced athletic performance and recovery time).

My insomnia and the racing thoughts keeping me awake also resolved with additional Thiamine in the form Thiamine TTFD (tetrahydrofurfuryl disulfide).  This TTFD form of thiamine, along with Neuromag, a form of magnesium, really has helped with brain function, anxiety and insomnia.  Don't take Thiamine close to bedtime as it may keep you too alert or energetic to sleep.  Take in the morning, and at lunch, but not after supper.  

I also have taken Tryptophan and Lysine as well as Theanine, all essential amino acids, that our bodies use to relax, heal and sleep.  Passion flower tea or supplements also aid in getting sleepy without feeling groggy the next morning.  Chamomile tea or Oolong also help with insomnia.

Interesting Reading:

Effect of physical activity on thiamine, riboflavin, and vitamin B-6 requirements

https://pubmed.ncbi.nlm.nih.gov/10919966/

The effects of endurance training and thiamine supplementation on anti-fatigue during exercise

https://pmc.ncbi.nlm.nih.gov/articles/PMC4241913/

Effects of thiamine supplementation on exercise-induced fatigue

https://pubmed.ncbi.nlm.nih.gov/8815395/

Exploring the Relationship between Micronutrients and Athletic Performance: A Comprehensive Scientific Systematic Review of the Literature in Sports Medicine

https://www.mdpi.com/2075-4663/11/6/109

Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet

https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/

Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet

https://pubmed.ncbi.nlm.nih.gov/19154566/

Nutritional Consequences of Celiac Disease and Gluten-Free Diet

https://www.mdpi.com/2036-7422/15/4/61

Impact of a Gluten-Free Diet in Adults With Celiac Disease: Nutritional Deficiencies and Challenges

https://pmc.ncbi.nlm.nih.gov/articles/PMC11692684/

Thank you so much @knitty kitty

I really appreciate this information. I’m so thankful to have found this forum and this community. After reading the book “at last a life” that @cristiana recommended, I have been experiencing a lot more anxiety than I thought I was. This book really helped me put things into perspective. 
 

In terms of the B complex, do you have recommendations for amounts or any B complex should do? I am in Canada if that makes any difference for brands. 
 

Also those articles are very helpful as well, thank you. I know 3 months is still early in the healing period but these tips are very helpful to hopefully feel physically better sooner than later! 

[knitty kitty]

@hjayne19,

So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile.

I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.  

Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.  

I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.  

I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.  

Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.  

Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free.

Glad to help with further questions.  

[hjayne19]

On 1/6/2026 at 11:52 PM, knitty kitty said:

@hjayne19,

So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile.

I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.  

Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.  

I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.  

I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.  

Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.  

Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free.

Glad to help with further questions.  

Hi @knitty kitty 

Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially when I went gluten free I felt great for the first few weeks then started having some stomach pain. So thought maybe I was lactose intolerant. I started eating lactose free Greek yogurt and that did help take the cramping away I guess. Over the last few months I haven’t eaten it every single day and I went a few weeks without it. The last few nights I did have a small amount with breakfast and noticed that was the only new thing I’ve really added to my diet. I had seen a few other posts about this. Is it possible to still react to lactose free? Would this potentially be a dairy allergy? Or something else. 

[trents]

You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.

[knitty kitty]

Hello, @hjayne19,

About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein.

Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia. 

Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.  

I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.  

The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.  

I hope you will consider trying the AIP diet.

[cristiana]

When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly. 

I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it!

To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.

 

[knitty kitty]

@cristiana, 

I react the same way.  Dairy consumption flushes out my digestive system within an hour, too!

As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies. 

This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.  

We have opioid receptors throughout our bodies including lots in the digestive tract.

Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button!

The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.  

Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.  

Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. 

The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.  

Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.  

Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.

 

[hjayne19]

Hi @knitty kitty

just covering back to this topic. I appreciate everyone’s help. Dairy was definitely adding to some of my issues but I wanted to ask about histamine. When I was working with my dietician I mentioned I got a stuffy nose when I was eating strawberries which I had just noticed one day in particular. Once I looked more into this I realized that histamine peaks at night and can cause insomnia exactly as I had been describing before. Working with her I realized while I wasn’t eating a lot of high histamine foods, I was eating a lot of histamine triggering or releasing like bananas (I was having several a day) and strawberries. Also some nights are worse than others but I also discovered meat sitting out even for a day can increase in histamines especially salmon which I eat quite a lot of even though I thought I was getting it fresh. Just wanted to know your thoughts and I’m just curious how this ties into celiac and leaky gut. 

[knitty kitty]

Yes, @hjayne19,

This is what I was saying in my post on January 15th and suggested the low histamine Autoimmune Protocol Diet which eliminates high histamine foods and histamine releasing foods.  

On 1/15/2026 at 10:57 AM, knitty kitty said:

Hello, @hjayne19,

About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein.

Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia. 

Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.  

I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.  

The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.  

I hope you will consider trying the AIP diet.

 

[trents]

My feeling is that histamine intolerance/MCAS is doesn't get enough press in the medical world and is greatly underdiagnosed.

[hjayne19]

2 hours ago, knitty kitty said:

Yes, @hjayne19,

This is what I was saying in my post on January 15th and suggested the low histamine Autoimmune Protocol Diet which eliminates high histamine foods and histamine releasing foods.  

 

Yes I saw. After reading the book I quickly became overwhelmed with that type of protocol. Unfortunately for me it seems unrealistic to eat with those guidelines. And I also find some of the information hard to understand and follow. I appreciate the recommendation though. 

[nanny marley]

On 1/3/2026 at 7:34 PM, cristiana said:

Hi @hjayne19

It sounds as if your insomnia is closely linked to your anxiety.  I had awful anxiety at diagnosis, and that feeling of doom that you describe.   My other symptoms were racing thoughts, and a tangible sensation of a weight bearing down on my shoulders, even if I was feeling perfectly well and happy - it would just hit me.  I then got a phobia to make things worse, linked to the fact that I had was suffering hypnopompic hallucinations (brief hallucinations on waking).  That was weird but I later learned they aren't all that uncommon, especially with people who suffer from aura migraines.  

In fact I felt so unwell that I didn't even recognise it as 'anxiety'.  I remember googling my various symptoms and it was only that that  made me realise I was suffering from anxiety, which was nothing like 'feeling a bit nervous before taking an exam' or , say, making a speech.  This was a whole new ball game.

As I came off gluten and healed, the anxiety started to get less and less.  It is not uncommon for coeliacs to have anxiety on diagnosis, so I hope that is reassuring to you.   And deficiencies can make it worse, or cause it, so are definitely worth investigating in further depth if you can.   There is certainly a big difference between 'normal' levels and 'optimum', as @trents says, and this excerpt from a British website and explains how with B12,, for example,  a normal level in one person can represent a deficiency in another:

In the UK, normal B12 levels vary slightly by lab but generally, above 200 ng/L is considered sufficient, 100-145 ng/L indicates possible deficiency, and below 100 ng/L suggests likely deficiency, though levels between 146-200 ng/L may still warrant treatment if symptoms are present, as per North Bristol NHS Trust and NICE guidelines

In fact, I understand levels are set much higher in other countries, such as Japan.  When I started to supplement B12 with high dose sublinguals I began to feel better, even though at diagnosis my levels were considered 'low normal'.   

I too had a lot of muscle twitching which was likely due to deficiencies, but of course if someone has a lot of adrenaline in their system it will only make twitching worse.  I remember reading on this forum one should take magnesium tablets, and it did really help.  As a sportsperson you might like to try throwing a good handful of Epsom salts into a lukewarm bath, and have a soak for 20 mins, as it can be absorbed through the skin.  But be careful as you leave the bath, it can make you woozy!

Lastly, to address the anxiety,  I found Dr Steve Llardi's book, albeit on Depression, incredibly helpful.  The Depression Cure: The Six Step Programme to Beat Depression Without Drugs.    Dr Llardi outlines a step-by-step plan for recovery from depression, which focuses on six key lifestyle elements that have largely disappeared in healthy doses from modern life:  physical exercise,  omega-3 fatty acids,  natural sunlight exposure,  restorative sleep,  social connectedness, and meaningful, engaging activity.    The other book (and there is a website) which helped me understand anxiety and recover is Paul David's, At Last a Life, written by a one-time sufferer.  I live in the UK and if I could award a knighthood to anyone in this country, it would be to Paul.  I am so grateful that these books crossed my path.  

Anyway, sorry for the length of this post.  I hope something might be of help.

Cristiana

 

Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗

[cristiana]

Thank you for your post, @nanny marley

It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties.

Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.

 

 

 

 

Edited February 5 by cristiana

[nanny marley]

I do believe that people are under so much pressure up have a sleeping  pattern ,  with working and how households work these days , but in reality there is no wrong or right at to sleep , I believe your neighbour showed this with such a long life , I do exactly the same  at night many times so I hope I live into my nineties also , I have found one thing in life your body knows what's best so good to listen to wat it needs however unconventional that maybe 🤗

[EvieJean]

On 1/3/2026 at 11:04 AM, hjayne19 said:

Hi! I am a recently diagnosed celiac and my first post here. 
 

hoping for some help. I initially didn’t have any gastric symptoms before diagnosis. Mostly night sweats almost every night and bad insomnia. Sometimes 1-3 hours before falling asleep but mostly waking at 4 am and not able to fall asleep. I felt like a zombie. I have also had low Ferratin for years. Sleeping got a little better I also realized I wasn’t eating enough carbs after working with a dietician. 
 

it’s been 3 months gluten free. I definitely am on the more sensitive side I would say. I get really bad panic/doom anxiety which was bad before diagnosis and has since improved but comes in waves. Now my insomnia has been bad again and looking for some advice. I try to keep a strict routine morning and night. But can’t seem to turn my brain off even though I’m exhausted. 
 

Anyone else going through 

[EvieJean]

Just now, EvieJean said:

On 1/3/2026 at 11:04 AM, hjayne19 said:

Hi! I am a recently diagnosed celiac and my first post here. 
 

hoping for some help. I initially didn’t have any gastric symptoms before diagnosis. Mostly night sweats almost every night and bad insomnia. Sometimes 1-3 hours before falling asleep but mostly waking at 4 am and not able to fall asleep. I felt like a zombie. I have also had low Ferratin for years. Sleeping got a little better I also realized I wasn’t eating enough carbs after working with a dietician. 
 

it’s been 3 months gluten free. I definitely am on the more sensitive side I would say. I get really bad panic/doom anxiety which was bad before diagnosis and has since improved but comes in waves. Now my insomnia has been bad again and looking for some advice. I try to keep a strict routine morning and night. But can’t seem to turn my brain off even though I’m exhausted. 
 

Anyone else going through 

Yes I am going through that I fall asleep for a few hours than I’m up all night and I’ve lost so much weight I look like a skeleton the brain fog is causing me to think I have the start of dementia, I started taken Aleve am & pm but just read it contains gluten & I’m having trouble finding gluten-free over the counter med for sciatica I also get knee shots every 6 months & I'm being to think they might be triggering flare up’s this is a tough road to walk..I also have to care for my 95 year old mother who doesn’t understand what I’m dealing with & she’s in physically bad shape & is refusing home health care, my stress level is over the top so my dr. Gave me Alprazolam for my anxiety & I just read about it could be contaminated with gluten..I’m at my wits end