My head

[James47]

Hey everyone I hope you are all doing well 🙏.

Writing here today as I was diagnosed last June with celiac at 48 years of age so there was massive internal damage done.i felt after I started my gluten-free diet that things started looking up but lately ig feels like it's took a right downward spiral.

My head is sore and that lethargic tired feeling is back .. energy levels low and my sleep Def not helping it's broken every night with bizarre dreams thrown in.is this just part of the recovery journey and will pass in time ? I follow a gluten-free diet to.tye letter here . prepared meals to take to work and I live myself.please guys any info would be greatly appreciated 👍👍👍.

[Pjticknor]

10 hours ago, James47 said:

Hey everyone I hope you are all doing well 🙏.

Writing here today as I was diagnosed last June with celiac at 48 years of age so there was massive internal damage done.i felt after I started my gluten-free diet that things started looking up but lately ig feels like it's took a right downward spiral.

My head is sore and that lethargic tired feeling is back .. energy levels low and my sleep Def not helping it's broken every night with bizarre dreams thrown in.is this just part of the recovery journey and will pass in time ? I follow a gluten-free diet to.tye letter here . prepared meals to take to work and I live myself.please guys any info would be greatly appreciated 👍👍👍.

So can you explain the head pain? I was diagnosed a couple years ago. I am 65 and have had this pain on the right side of my head for a long time now, along with lethargy and depression. I follow a gluten-free diet, but just feel terrible everyday!

[James47]

54 minutes ago, Pjticknor said:

So can you explain the head pain? I was diagnosed a couple years ago. I am 65 and have had this pain on the right side of my head for a long time now, along with lethargy and depression. I follow a gluten-free diet, but just feel terrible everyday!

The length of time you have went undiagnosed is longer than myself.i was 48 years of age..you will have a long long road to recovery but just keep doing what your doing and you will start to feel better but it's a long road for you..headache is like your head in a vice..take calcium supplements to ..hope all this helps you 

[knitty kitty]

Welcome to the forum!

Are either of you supplementing with B Complex vitamins and minerals like magnesium?

We have to buy our own vitamins when we go gluten free because we are no longer consuming the vitamins put into gluten containing products.  

Gluten free processed foods are not required to have vitamins added to them.

Thiamine Vitamin B1 helps headaches.  Extra thiamine in the form Benfotiamine along with a B Complex supplement is very important to heal the digestive tract and correct nutritional deficiencies caused by poor absorption in Celiac Disease.

Hope this helps!

[James47]

12 hours ago, James47 said:

The length of time you have went undiagnosed is longer than myself.i was 48 years of age..you will have a long long road to recovery but just keep doing what your doing and you will start to feel better but it's a long road for you..headache is like your head in a vice..take calcium supplements to ..hope all this helps you 

Hey kitty thank you..been half a year for me so I'm still a lot of trial and error,food wise I'm ok now but supplements wise not so good.

IL pop into Holland and Barrett today..thanks for the advice.

Also I have a hiatus hernia that's pushing my stomach up a bit so all and all my insides aren't a rosy garden at the moment 

[knitty kitty]

@James47,

I found the Autoimmune Protocol Diet, a type of Paleo Diet, extremely helpful in getting inflammation reduced and healing started.  It was designed by a doctor who is Celiac, Dr. Sarah Ballantyne. (Her book, The Paleo Approach, is very helpful.  Not an advertisement, simply what helped me.)

The AIP diet cuts out all processed foods, grains, seeds, nuts, dairy, eggs, nightshades (tomatoes, potatoes, peppers and eggplant), legumes (beans), pulses (lentils), and other foods that can be inflammatory to the digestive tract for several weeks.  Foods are reintroduced gradually.  

Drastic change, yes, but I started feeling much better within a few days.  I also took Benfotiamine (a form of Thiamine Vitamin B1 that promotes intestinal healing), a B Complex, Vitamin D (helps regulate the immune system), and minerals like magnesium, zinc and potassium. Check with your doctor and nutritionist about nutritional supplementation to boost vitamin absorption to counteract malabsorption caused by Celiac Disease. 

I found an interesting article...

Thiamine deficiency unrelated to alcohol consumption presented with urinary retention and Wernicke's encephalopathy: A case report

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10415583/

Keep us posted on your progress!

[CatherineWang]

Hi. First off, big hugs to you on your journey. I went through something similar a while back. When I started my gluten-free diet, I felt like I was finally on the right path, but then those pesky symptoms started creeping back in. Turns out, it's not uncommon to hit bumps along the road to recovery. Our bodies are still adjusting, and it takes time. I found that paying attention to not just what I eat but also how I manage stress and sleep really helped. Keep being diligent with your diet, and maybe try adding some relaxation techniques or gentle exercise to ease the stress. And those bizarre dreams? Been there! They eventually settled down for me.

[James47]

On 2/21/2024 at 10:30 PM, knitty kitty said:

Welcome to the forum!

Are either of you supplementing with B Complex vitamins and minerals like magnesium?

We have to buy our own vitamins when we go gluten free because we are no longer consuming the vitamins put into gluten containing products.  

Gluten free processed foods are not required to have vitamins added to them.

Thiamine Vitamin B1 helps headaches.  Extra thiamine in the form Benfotiamine along with a B Complex supplement is very important to heal the digestive tract and correct nutritional deficiencies caused by poor absorption in Celiac Disease.

Hope this helps!

Hiya . listen thank you so much ..very helpful and yes taking supplements galore..long road but IL get there

[James47]

11 minutes ago, CatherineWang said:

Hi. First off, big hugs to you on your journey. I went through something similar a while back. When I started my gluten-free diet, I felt like I was finally on the right path, but then those pesky symptoms started creeping back in. Turns out, it's not uncommon to hit bumps along the road to recovery. Our bodies are still adjusting, and it takes time. I found that paying attention to not just what I eat but also how I manage stress and sleep really helped. Keep being diligent with your diet, and maybe try adding some relaxation techniques or gentle exercise to ease the stress. And those bizarre dreams? Been there! They eventually settled down for me.

Hey Catherine

 

I think we are mirror images of each other definitely going thru same process..the dreams are bizarre..IV currently been given a three week doctor line to just rest and get myself back in a good place as I have been struggling of late ..where in the UK are you from?

[CatherineWang]

On 2/26/2024 at 9:32 AM, James47 said:

Hey Catherine

 

I think we are mirror images of each other definitely going thru same process..the dreams are bizarre..IV currently been given a three week doctor line to just rest and get myself back in a good place as I have been struggling of late ..where in the UK are you from?

Thanks for the response, I am not from UK actually I am from the USA, Las Vegas.

[James47]

6 hours ago, CatherineWang said:

Thanks for the response, I am not from UK actually I am from the USA, Las Vegas.

Well best of luck with your recovery and be great hear from you in future let me know how your getting on 

[knitty kitty]

Seriously, I've experienced migraines and those strange dreams.  The only things that made them better was supplementing with these B vitamins, especially Thiamine, and magnesium.  No amount of meditation or relaxation techniques worked until I fixed the underlying subclinical vitamin deficiencies that occur in Celiac Disease.  If we don't absorb sufficient vitamins from our diet, our bodies and brains cannot function properly.  

Thiamine B1,and other B vitamins like Cobalamine B12, Folate B 9, and Pyridoxine B6, and minerals like magnesium will help not only with headaches, but also with those strange dreams.  

References:

A Survey on Nutritional Knowledge in Coeliac Disease Compared to Inflammatory Bowel Diseases Patients and Healthy Subjects

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7230195/

Nutritional Status and Metabolism in Celiac Disease: Narrative Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10419423/

B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9860208/

Nutrients to Improve Mitochondrial Function to Reduce Brain Energy Deficit and Oxidative Stress in Migraine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8707228/

Dietary intake of thiamine and riboflavin in relation to severe headache or migraine: A cross-sectional survey

https://pubmed.ncbi.nlm.nih.gov/36047917/

 

[James47]

4 minutes ago, knitty kitty said:

Seriously, I've experienced migraines and those strange dreams.  The only things that made them better was supplementing with these B vitamins, especially Thiamine, and magnesium.  No amount of meditation or relaxation techniques worked until I fixed the underlying subclinical vitamin deficiencies that occur in Celiac Disease.  If we don't absorb sufficient vitamins from our diet, our bodies and brains cannot function properly.  

Thiamine B1,and other B vitamins like Cobalamine B12, Folate B 9, and Pyridoxine B6, and minerals like magnesium will help not only with headaches, but also with those strange dreams.  

References:

A Survey on Nutritional Knowledge in Coeliac Disease Compared to Inflammatory Bowel Diseases Patients and Healthy Subjects

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7230195/

Nutritional Status and Metabolism in Celiac Disease: Narrative Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10419423/

B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9860208/

Nutrients to Improve Mitochondrial Function to Reduce Brain Energy Deficit and Oxidative Stress in Migraine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8707228/

Dietary intake of thiamine and riboflavin in relation to severe headache or migraine: A cross-sectional survey

https://pubmed.ncbi.nlm.nih.gov/36047917/

 

Hey again 🙂

 

Wow you proper know your stuff..thanks you so much..I went into Holland and Barratt in Glasgow and I'm now on the three supplements..I will keep you posted how all goes..thanks again it's really appreciated

 

James 

[knitty kitty]

I'm a microbiologist who understands how vitamins work intracellularly.  

Which three supplements are you now taking?

[James47]

Thiamine magnesium and calcium kitty

3 minutes ago, knitty kitty said:

I'm a microbiologist who understands how vitamins work intracellularly.  

Which three supplements are you now taking?

Also off alcohol for the present 

[knitty kitty]

You need a B Complex because Thiamine interacts with every other B vitamin to ensure proper functioning within cells.  

Thiamine needs magnesium to make life sustaining enzymes.  Calcium balances with magnesium.  

Do consider adding Vitamin D which regulates the immune system, lowering inflammation.  

Good job!

[James47]

1 minute ago, knitty kitty said:

You need a B Complex because Thiamine interacts with every other B vitamin to ensure proper functioning within cells.  

Thiamine needs magnesium to make life sustaining enzymes.  Calcium balances with magnesium.  

Do consider adding Vitamin D which regulates the immune system, lowering inflammation.  

Good job!

Thank you

 

Loved the good job..ye me 😁..keep in touch and hope life's well with you 

[knitty kitty]

@James47,

Yes!  Yeah you!   😸

Celiac can be a bumpy journey and we all need to encourage each other along.  

 @Wheatwacked can tell you this story about Celiac, alcohol and thiamine.  Perhaps he will join us.  

I'm a big fan of taking high dose Thiamine because of the benefits.  

Here's some interesting articles...

Thiamine and benfotiamine: Focus on their therapeutic potential

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10682628/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Keep us posted on your progress!