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Gluten free? (Read 1115 times)
Georgewhufc
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Gluten free?
Jan 13th, 2020 at 8:12am
 
Hi all,

I haven't been on this forum for a couple of years, mainly because I've been PF for most of them! I started taking Batch's regimen in 2017 (thanks Batch and Hi if you're reading this!) and it seemed to have done the trick for me.

My wife has recently had to go gluten free, and to make things easier for her I've joined her so eating at home and visiting restaurants etc. is a little simpler.

I'm 8 days into being Gluten Free and for the last two days I've had 2 strong 'shadow' like headaches. They're nowhere near my previous CH's but it's the same side and a headache I certainly haven't experienced for a while.

Has anyone experienced or heard that a dietary change like going Gluten Free can either a) be a trigger or b) mess with how my body is using the supplements I take as part of Batch's regimen?

Thanks in advance
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Batch
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Re: Gluten free?
Reply #1 - Jan 14th, 2020 at 3:57pm
 
Hey George,

I'm with you and thanks for the feedback.  I think you're addressing the same problem many CHers have faced or will face at one time or another, What's causing my CH to return?  Was it a change in diet or what?   This brings us to the pregnant question and cunundrum of causality or coincidence?

While there's almost always a cause (reason) why our CH return, it may not be obvious, so we tend to jump on things we know that have changed, in your case, a Gluten Free Diet, but the relationship is more likely a coincidence and not causal without a lot more evidence.

I've lived with CH since 1994 and I started studying it full time in 2005 when I was Dx'd as a CCHer and retired because of it.  In October of 2010 after finding that 10,000 IU/day vitamin D3 plus the cofactors prevented my CH very effectively after two doses, I shifted the focus of my research to determine how vitamin D3 prevented CH and shortly after that, why it didn't work to prevent CH in some cases. 

I don't have all the answers as to the exact mechanism of action by which vitamin D3 prevents CH except to say it involves genetic expression.

Genetic expression is a term that describes the process where a molecule (in molecular biology, a ligand - in our case a vitamin D3 molecule) physically enters a neuron in our trigeminal ganglia, then penetrates the nucleus and into a chromosome where it attaches to a gene sequence on a strand of DNA causing that gene to up- or down-regulate the production of genetic products (proteins and peptides).

After a few months research in 2010, I was convinced that the genetic expression made possible by vitamin D3 down-regulated the expression of the Calcitonin Gene-Related Peptide (CGRP) and that this was the mechanism of action responsible for preventing CH.  Many brilliant molecular biologists, endocrineologists and neurologist had found CGRP elevated during the pain phase of CH and migraine so I thought I was on the right track.

I wasn't alone.  In 2011 Big Pharma began touting CGRP as the holy grail for migraineurs and CHers in anticipation their anti-CGRP monoclonal antibodies would become another billion dollar a year biologic like Humira reducing CGRP and in the process, preventing migraine and cluster headache.

I was skeptical so after a lot of heavy reading it became very clear that CGRP isn't the only CH and migraine triggering agent.  It turns out there's a mother of all cocktails comprised of several biochemical mediators, including the Eicosanoids (leucotrienes and prostaglandins), cytokines (TNFα, IL-1ß, IL-6), chemokines (CCL2, CXCL1, CXCL5), growth factors (NGF, BDNF), and neuropeptides (substance P (SP), CGRP, Vasoactive Intestinal Peptide (VIP) and Pituitary Adenylate Cyclase-Activating Peptide (PACAP) that play key roles in the pain pathway of cluster and migraine headache.

On top of that, it turns out that the highly touted monoclonal antibodies (mAbs) developed by Big Pharma have a molecular mass of 150 KDa (150,000 Daltons).  The "So What" factor that Big Pharma acknowledges sotto voce (very quietly), is the windows through the blood brain barrier (BBB) can only pass molecules with a molecular mass of ≤400 Da.  That means their highly touted anti-CGRP mAbs are 375 times too big to pass from the bloodstream through the BBB into the intercellular space within the brain and into neurons within our trigeminal ganglia where CGRP is expressed.

To my way of thinking, as these mAbs cannot pass through the BBB and enter neurons where where the neruopeptides responsible for migraine and CH are expressed, the mAbs will never prevent migraine or CH completely.  At best, they'll reduce serum concentrations of CGRP and that will help reduce the frequency and severity of migraine and cluster headache.

Getting back to why the anti-inflammatory regimen fails to control CH for some CHers who start it and why a CHer who has been CH pain free while taking this regimen for months or years falls out of remission.  Fortunately I've maintained feedback from hundreds of CHers taking this regimen with many reporting this same problem. 

I was able to identify four conditions that caused a drop in the serum concentration of 25(OH)D3 that would account for CH coming out of remission as the serum concentration fell below the triggering point or CH pain free threshold.  These conditions are infections, (viral, bacterial and fungal), other medical conditions or diseases that result in inflammation, trauma and surgery.  I found several case studies and papers that confirmed these four conditions result in a drop in 25(OH)D3 serum concentration.  I suspected there was a fifth condition, but didn't find it until the spring of 2015.

I had been on travel and returned home just as the Alder and Big Leaf Maple trees that surround our home let loose with a major pollen fall that coated by black pickup truck like it had been heavily dusted with Portland cement.  Clouds of pollen were blowing around the yard as I entered the house.  Within an hour, symptoms of allergic rhinitis were clearly evident.  Two hours later my CH returned with a vengeance.  I had been CH pain free at that point for nearly 5 years taking 10,000 IU/day vitamin D3 plus the cofactors.

I started loading with vitamin D3 at 50,000 IU/day, but four days later, there was no change.  The CH beast was still jumping real ugly four to five times a day/night.  That's when the good idea light came on bright...  Treat the allergy!  The Physician's Desktop Reference guide suggested a first-generation antihistamine as indicated for allergic reactions.  First-generation antihistamines pass through the BBB to block histamine H1 receptors at the genetic layer.  I started a course of Benadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day and at bedtime.  It worked.  Less than 24 hours after starting the Benadryl, my CH were back in remission.

That got me started on another quest to find the mechanism of action by which an allergic reaction triggers CH.  It didn't take long to find papers concluding it all starts with an allergen landing on a Mast Cell.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Mast cells are special white blood cells that appear to be loaded with granuals when viewed under a microscope.  They're located in the intercellular space throughout thee body and CNS next to capillaries.  When insulted by an allergen (pollen, mold spores, dust mite poo, industrial pollutants and certain foods) they degranulate releasing these granules into the intercellular space.  The following graphic illustrates what these granules contain.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

I began researching existing open source papers on allergic reactions with respect to the neuropeptides CGRP, SP, VIP and PACAP.  I found clear evidence that the histamine released during an allergic reaction was capable of increasing the expression of CGRP and the other neuropeptides from within neurons throughout the brain and in particular, the trigeminal ganglia.  These are the same neuropeptides responsible for the neurogenic inflammation and pain we know as CH and migraine.

If you've followed my epistle this far, your question, could a Gluten Free Diet be responsible for the return of your CH? The answer is no, that is very unlikely.  If anything a gluten free diet should help prevent CH as you're eating fewer wheat products and it wouldn't affect the supplements in the anti-inflammatory regimen.  The likely trigger that enabled the CH beast to come out of remission and jump ugly is an allergic reaction to something in your environment or something you ate.

Moreover, if this is the case, a week to 10 day course of Benadryl (Diphenhydramine HCL) at 25 mg four times a day plus 4 to 5 days at a loading dose of 50,000 IU/day should stop the CH beast from jumping ugly and get you back to a CH pain free state.

Take care and please keep us posted.

V/R, Batch
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Georgewhufc
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Re: Gluten free?
Reply #2 - Jan 15th, 2020 at 7:56am
 
Batch,

As ever, your reply, insight and knowledge astounds me! Thank you so much for coming back to me in such detail.

I always found it tricky to get my hands on some Dip HCL in the UK, so last time I was over in the States I brought some back with me just in case... I may be cracking that open tonight!

I'm racking my brains as to what I may have eaten or done differently that might have caused this reaction. As I said, the headaches I've been experiencing are very much shadows and nowhere near a full blown CH I remember so vividly!

I have dropped the Omega 3 from my regimen intake in the last few months as my stash from iHerb ran out and I'm still in good stock of the other elements (10,000iu D3, MultiVit, Magnesium) so haven't placed another order. I did wonder if that could be something to do with it? I can't find a UK equivalent of my NatureMade iHerb Fish Oil with such a high omega 3 content but may just double up on a lesser strength offering.

Thanks again for all your help and advice,

George

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Georgewhufc
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Re: Gluten free?
Reply #3 - Jan 15th, 2020 at 9:48am
 
Update for you Batch - I've found some good strength Omega 3 tabs from Holland and Barrett (a UK health retailer) and I've ordered some K2 too. Will start these tomorrow.

Currently taking daily:

10,000 iu Vitamin D
520mg Magnesium Chloride
1 x 21st Century, Sentry Senior, Multivitamin & Multimineral Supplement

Hopefully adding the Fish Oil and K2 will help kick things back into action. Will give Dip HCL a go too.

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Batch
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Re: Gluten free?
Reply #4 - Jan 16th, 2020 at 10:35am
 
Hey George,

The klingon hits are likely due to your 25(OH)D3 level being too low or your CH pain free threshold being higher than normal.  Both conditions lead to a perfect storm.  The best course of action many CHers hav taken in this case is to load vitamin D3 at 50,000 IU/day for a few days or until you experience a CH pain free response for at least two days. At that point ,taper the dose back down to 50,000 IU/week with the Bio-Tech D3-50.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Jan 16th, 2020 at 10:36am by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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