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 yesterday at 07:36 PM 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.