Going gluten free caused rapid increase in migraine auras

[Janmac]

Hi

Three months ago at age 72 I was diagnosed coeliac. Immediately after going gluten free I experienced a dramatic increase in migraine auras (sparkly vision distortions) so that after 1 month I was getting one every morning and sometimes up to 3 a day. I have had migraines since childhood but only up to 2 or 3 a month and rarely severe. With the auras I was also experiencing numbness and tingling in my hands and quite severe “brain fog” but no headache. The only thing common to my morning diet was coffee. The day after I stopped drinking coffee all these new symptoms disappeared and have not recurred after 2 months. Has anyone else experienced this? I’m about to gradually reintroduce coffee to see what happens.

[trents]

Welcome to the forum, Janmac!

Coffee is a trigger for my migraines as well. I started in again on drinking a cup in the morning and my migraines started becoming more frequent until I was having them almost every day. I stopped drinking coffee about two weeks ago and the migraines have almost disappeared. I don't get auras. But I do get some nausea, light sensitivity and intense pain seeming to originate somewhere behind my eyes, more on the left than the right side. Coffee is not my only trigger but one of the main ones. A cup here or there doesn't seem to give me a problem but when I drink it regularly it does. Many of my food triggers seem to be that way. Slipping into irregular sleep patterns is also a trigger for me.

Glad to hear you are doing better.

Edited November 25, 2022 by trents

[knitty kitty]

Hello.

I've suffered from migraines with aura since childhood, too.  My migraines have pretty much stopped since supplementing with high dose Thiamine.  I still get ophthalmic migraines triggered by computer screens, digital tv screens, phone screens.  My optic nerve shuts down and I lose my vision.  So, forgive me for being brief. 

High dose Thiamine supplementation is helpful in migraines.  Thiamine provides energy for brain and muscle function.  Our brains just thinking can use as much energy as a marathon runner's muscles.  

If we don't get enough thiamine in our diet, if we eat a high carbohydrate diet, or if we have malabsorption, our thiamine levels can drop, and a migraine can result.  

Coffee contains natural chemicals that bind with and break thiamine preventing thiamine from working at all.  Coffee, teas (tannins), chocolate, caffeinated soft drinks are bad for thiamine, too.  

Here's an article by Dr. Lonsdale...

https://www.hormonesmatter.com/migraine-diet-thiamine/

And some scientific studies...

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

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

And...

Oral High-Dose Thiamine Improves the Symptoms of Chronic Cluster Headache

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5932500/

And...

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

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

And...

Associations between potential inflammatory properties of the diet and frequency, duration, and severity of migraine headaches: a cross-sectional study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8861209/

Hope this helps!

[Janmac]

2 hours ago, knitty kitty said:

Hello.

I've suffered from migraines with aura since childhood, too.  My migraines have pretty much stopped since supplementing with high dose Thiamine.  I still get ophthalmic migraines triggered by computer screens, digital tv screens, phone screens.  My optic nerve shuts down and I lose my vision.  So, forgive me for being brief. 

High dose Thiamine supplementation is helpful in migraines.  Thiamine provides energy for brain and muscle function.  Our brains just thinking can use as much energy as a marathon runner's muscles.  

If we don't get enough thiamine in our diet, if we eat a high carbohydrate diet, or if we have malabsorption, our thiamine levels can drop, and a migraine can result.  

Coffee contains natural chemicals that bind with and break thiamine preventing thiamine from working at all.  Coffee, teas (tannins), chocolate, caffeinated soft drinks are bad for thiamine, too.  

Here's an article by Dr. Lonsdale...

https://www.hormonesmatter.com/migraine-diet-thiamine/

And some scientific studies...

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

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

And...

Oral High-Dose Thiamine Improves the Symptoms of Chronic Cluster Headache

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5932500/

And...

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

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

And...

Associations between potential inflammatory properties of the diet and frequency, duration, and severity of migraine headaches: a cross-sectional study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8861209/

Hope this helps!

Thank u so much for all that information - very complicated but very interesting. I’m still a bit in the dark about the links between eliminating gluten, caffeine, and migraine auras but I’m certainly in a lot better position than many, not getting the headaches any more (fingers crossed!) I suspect there’s a lot more to be learned about gluten!

[knitty kitty]

@Janmac,

Thiamine is a vitamin that helps if you have migraines.  

People with Celiac Disease have problems absorbing enough vitamins from their food.  The gluten free diet can be low in vitamins and minerals. 

If you take vitamin supplements, you can ensure you're getting all the vitamins your body needs to get and stay healthy.

Supplementing with Thiamine has been shown to help reduce frequency and severity of headaches.  

Thiamine is one of the eight B vitamins.  Taking a B Complex supplement and additional thiamine (like Benfotiamine) will help with migraines.

[cristiana]

20 hours ago, knitty kitty said:

I still get ophthalmic migraines triggered by computer screens, digital tv screens, phone screens. 

This is so interesting!  I had no idea you had this issue, @knitty kitty.

I suffered from very bad, nauseating headaches as a teenager and young adult.  I then thought they were bad enough to qualify as migraines (self-diagnosed!) so started to take painkillers for migraines, which helped.  In my mid-thirties when I fell pregnant with my first child I had my first migraine with aura.  It was painless but a bad one - lasted about 20 minutes, but it affected my speech and I found it hard to put two words together.    My worst episode ever was after I had my second child and I had aura after aura, like a snow storm, for about 24 hours after giving birth.   They improved as my hormones settled. 

Then, about two to three years after going gluten free, when my TTG numbers were still nonetheless quite high, but I was definitely excluding gluten from the diet, I had an episode of seeing very pretty multicoloured lights in the centre of my vision, for the usual 20 minutes or so. 

But after that I noticed that if I stared at a mobile phone screen, or did detailed work - say, thread a needle -  I might get sparkles in my central vision which would last for about 10 to 20 minutes.  I've had my eyes checked - both fine - and have been told it is just a type of migraine.  It is very annoying as I can't used a mobile phone for any amount of time so just stick with a basic Nokia.   I feel very left behind with technology as I can't own a smartphone!

 

[knitty kitty]

@cristiana,

I had no idea you experience this, too!   I've used special polarized computer filters, polarized lenses, blue light filtering glasses.  Vision fades or those sparkly lights happen when I do needlework, as well, if I'm hyperfocused on threading a needle or knitting a complicated lace pattern.  

My ophthalmologist said it was overstimulation of the optic nerve causing it to shut down.   

I was diagnosed by an ophthalmic specialist a few years later with optic nerve head swelling.  I was given a cornucopia of medications.  Since then I've learned that optic nerve head swelling is a symptom of Thiamine deficiency.  

I believe I was on the borderline between thiamine deficiency and insufficiency for a long time.  Hindsight being what it is, I can connect migraines, auras and vision loss with physically and emotionally stressful events. 

Our bodies use more Thiamine during physical stress and emotional stress.  Childbirth definitely affected my auras and migraines.  Interestingly, a twenty percent increase in Thiamine in the diet can give an eighty percent increase in brain function.  So the symptoms of Thiamine insufficiency can fluctuate and even disappear mysteriously. 

Thought this would be of interest...

Visual loss and optic nerve head swelling in thiamine deficiency without prolonged dietary deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4039400/

 

[cristiana]

@knitty kitty

Finally, an explanation!  Thank you for this, I thought it was so weird and only recently after years of googling did I find a thread on a forum with people who had experienced the same thing with "close work" but had had no explanation given for it.  My optician and doctors weren't fazed by it at all  nonetheless there was never an explanation given.   Please convey my thanks to your ophthalmologist next time you meet! 

Thanks for the link, too.

I have noted that these particular auras alter in frequency.  I've put it down to hunger being a factor, dehydration, too much close work etc, but now I'm wondering about deficiencies.  I can't imagine I'll be able to have my thiamine levels tested in this country through the NHS but I can try to eat more food with it in, and supplement.  Will report back.🙂

 

Edited November 26, 2022 by cristiana