Gluten's Role....

Folks,

I alluded to this in an introduction of myself and my son.  I looked through the Co-Conditions and Co-Factors forums and didn't see a specific forum for Gluten sensitivity or related subjects as related to MS.  Our experience is there may be a connection - in that Gluten appears to play a role of some sort in my Son's MS - and in peripheral neuropathy for me.

I have no idea of the mechanisms that may connect CPNi and Gluten - and I'm not at all certain there is any - they could simply be co-conditions or co-susceptibilities for some.

There is a known condition - "Gluten Ataxia" - that can be googled - and you will find lots of information - including stories of folks who went off of gluten and had a miraculous appearing recovery from gluten.  Google Roger MacDougall - and MS - and you will likely find his story.

My purpose in creating this "forum topic" is threefold:

1. To point out that if you have MS - a "Presumptive Treatment"may be called for - <e.g. the Empirical Treatment that DW refers to>.  A "Presumptive Treatment" for gluten sensitivity is simple to do - and requires no medical intervention or oversight.  You simply quit eating anything that has gluten in it for a period of time. Gluten comes from Wheat, Rye and Barley.  It is a long chain protein molecule that is thought to be similar to myelini - though I don't know if that's it's only mechanism of action.

Gluten is sneaky - and can be found it lots of things where it isn't labelled as such (vinegar, toothpaste, shampoo even) - but - if you do your research - it is not at alll difficult to do a gluten free trial.  If you are very sensitive - you may notice a difference nearly immediately - within a week.  Rick did - and each time he accidently ingests it now - he gets very immediate and noticeable symptoms.  Increased weakness and balance problems are his first sign.  For me - in order to notice the symptoms - it takes 3 weeks of a "gluten challenge" - the oppositive of going off of gluten - to notice the symptoms again - which are warm tingly feet - like wearing a pair of electric socks.  If gluten is playing a role - going off of gluten may speed up your recovery while on a CAPi protocol.

2. To find out if anyone else here - has had any issues with Gluten - that they might be willing to share.  I'm convinced that Ricard would already be bedridden or worse - by now had we not eliminated gluten from his diet - largely anyway except for occassional cross contamination at restaurants.

3. To ask that anyone with a medical background - and in particular Dr. Wheldon - has any knowledge of a connection between CPN infection and gluten sensitivity.  I have a theory that CPN could weaken the blood brain barrier and allow some kind of bad actor <gluten or antibodies to gluten come to mind> - across into the brain where it can do havoc.  That is based on the observation that Rick - sensitive to gluten and has MS - and has signs of gluten ataxia that have reversed <lesions in his cerebrum that have dimiinshed> - while I - no MS - still gluten sensitive - get peripheral neuropathy symptoms if I ingest gluten for 3 weeks.  That's just a layman's notion - any thoughts or knowledge of other mechanisms - or ideas - particularly from an informed medical professional such as Dr. Wheldon or others - would be terrific.

I would greatly appreciate any and all responses on this subject.  I hope that item 1 - a "Presumptive Test" of going off of gluten - if tried by anyone - makes a difference in their life.  It has for me in a small way <no warm socks - lowered blood pressure> - and in a HUGE way for Rick - who has MS - and will be starting a Wheldon / Stratton protocol in October.

Thanks again to everyone in this forum - it's a delight to be here - I keep broadening and deepening my knowledge through reading all your posts - getting started, the handbook <fabulous work there> - etc.

Best & highest regards,

Tom

Proud Father of Rick & Jamie...

Yep. We've had issues with gluten. For some people it causes inflammationi and any source of inflammation will cause a worsening of M.S. symptoms.  Too much sugar will do it too.

We went gluten-reduced when my husband was diagnosed with Crohn's and gluten-sensitivity. Since he wasn't intolerant, we didn't need to go to the extremes some people do. We just switched to rice pasta and cut-out pizza, hamburger buns, cakes, cookies...etc. I defnitely felt the difference and this was before I was diagnosed with M.S.

When my husband's gluten-sensitivity and Crohn's disappeared a couple years ago (thanks CAPi), we reintroduced gluten items. The look of joy on his face when he could have pizza again was priceless. Nowadays we live gluten-light. Not alot but alittle. Hubby hasn't had any problems and the only time I'll have an issue is when I have sugar and gluten togther. Pasta is fine but cake is a no-no, it'll definitely cause a flare.

Everyone is different and not everyone has to go completely gluten-free. This is one of those things that each person needs to investigate for themselves and see what amount is ok. The only exception are the celiacs.

Thank you Jen_Obrien for sharing your story.

Apparently gluten issues in my family run very deep - but - now just as apparently - it seems that CPNi infection does too.  My Dad went off of gluten - and his crohns and his ankylosing spondilitis - a severe for of arthritis - both seemed to stop.  That was the clue that led us to consider that for Richard.

My Dad recently passed away - at 80 so he did have a rich and full life - after 3 bouts with community acquired pneumonia in a year - with each bout worsening his health and weakening his heart.  I would not be surprised if CPN was implicated in all of that. It would not surprise me if CPN "ran in families."

Had we found out about CPN sooner - perhaps my Dad could have been treated with a CAPi protocol - and maybe would have had a few more years of life.  One never knows - the situation was fairly complicated - as was his medical condition.

I saw after I posted that other folks have chimed in about gluten - but I was not able to find a sub-topic in "Co-Conditions" for Gluten - so thought it might be worth putting one there. 

Best & highest regards...

Tom

Proud Father of Richard & Jamie..

 

 

 

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

I'm going to venture an opinion here, not medical knowledge, but a personal opinion.  I believe the gluten issue is a product of the cpni infection's meddling.  I think, once righted by treating the cpn infection, gluten will become a non-issue. 

So many people report their allergies disappear after CAPi, as does their irritable bowel, rosaceai, etc., that - just my observation over many years of reading people's stories of recovery - the gluten issue may be similar. 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Get Notes via RSS Zonulin and gluten: the link to the blood brain barrier by CCSVI in Multiple Sclerosis (Notes) on Wednesday, May 18, 2011 at 2:49pm Dr. David Hubbard discussed research into zonulin in his presentation at the Hubbard Foundation conference. As many of you know, the Hubbard Foundation recommends a gluten-free diet to maintain endothelial integrity and a healthy blood brain barrier. http://www.hubbardfoundation.org/nutrition< Another neurologist named David--Dr. David Perlmutter-- also recommends a gluten free diet. Here is his newly published book, Grain Brain http://www.grainbrainbook.com< So, what is gluten?? Gluten is a special type of protein that is commonly found in rye, wheat, and barley. Therefore, it is found in most types of cereals and in many types of bread. Not all foods from the grain family, however, contain gluten. Examples of grains and seeds that do not have gluten include wild rice, corn, buckwheat, millet, amaranth, quinoa, teff, oats, soybeans, and sunflower seeds. If you're like me, you've probably wondered, "What the heck does gluten have to do with the brain?" Well, there is a very interesting connection, and it's based on research being done at the University of Maryland on a protein called zonulin. Zonulin is increased in our blood when we eat foods that contain glutens-- http://journals.lww.com/jpgn/Fulltext/2005/10000/Effect_of_Gluten_Contai...< EVEN IF YOU DO NOT HAVE CELIAC DISEASE OR A GLUTEN ALLERGY, ZONULIN WILL AFFECT YOU. Zonulin works as a gatekeeper in the intestine and also in the blood brain barrier. The more zonulin you have in your blood, the more permeable the tight junctions of your blood vessels become. Not a good thing, if we want to maintain a healthy lining in our guts, and blood brain barrier. So, the basic message is...try not to eat foods that contain glutens. If pwMS have a venous system that refluxes and creates inflammationi, we need to do everything in our power to keep those blood vessels healthy, strong and non-permeable. And avoiding gluten and the zonulin it creates, is a terrific thing to do! Researchers find increased zonulin levels among celiac disease patients Researchers at the University of Maryland School of Medicine have found that the human protein zonulin, which regulates the permeability of the intestine, is at increased levels during the acute phase of celiac disease. The discovery suggests that increased levels of zonulin are a contributing factor to the development of celiac disease and other autoimmune disorders such as insulin dependent diabetes, multiple sclerosis, andrheumatoid arthritis. The findings are published in the April 29 issue of the journal Lancet. "Zonulin works like the traffic conductor or the gatekeeper of our body's tissues," says lead author Alessio Fasano, M.D., professor of pediatrics and physiology at the University of Maryland School of Medicine, and director of Pediatric Gastroenterology and Nutrition at the University of Maryland Hospital for Children. "Our largest gateway is the intestine with its billions of cells. Earlier research conducted by Dr. Fasano discovered that zonulin is also involved in the regulation of the impenetrable barrier between the blood stream and the brain, known as the blood-brain barrieri. Celiac disease offered Dr. Fasano and his team a unique model for understanding the dynamic interaction between zonulin and the immune system. Celiac disease is a genetic disorder that affects one out of every 300 people in Europe, but its prevalence in the United States is not fully known. People who suffer from the disorder are unable to eat foods that contain the protein gluten, which is found in wheat and other grains. The gluten sets off a reaction that can cause diarrhea, abdominal pain, malabsorption of nutrients, and other gastrointestinal problems. Celiac disease can be easily treated by avoiding foods with gluten.

Gluten can cause lesions on the brain that mimic MSi. In my humble opinion, anyone diagnosed with "MS" should be recommended a gluten free diet.

http://www.celiac.com/gluten-free/blog/1038/entry-1767-the-effects-of-gl...<

The paper published in The Lancet:

https://www.ncbi.nlm.nih.gov/pubmed/20170845<

 

Thank you MacKintosh,

It would be great if gluten became a non-issue!  I love realy pizza, and so does Rick.

Given how badly it effects Rick - we will be proceeding with all due caution - as far as wheat is concerned.  But who knows - maybe in 3 years or so after he's made his way through the CAPi protocol and turned back his EDSSi scale - he'll try it and what you said would come true.

Best & highest regards,

Tom

Very Proud Father of Rick & Jamie

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Hi Kerri,

Thanks a ton for all this information.  Rick at one point wanted to be a Chef - and baking - with flour - was a big part of that for him!  He has, however - been close to immaculate in avoiding wheat - very careful with wheat, etc. in any form - the only times he's been "contaminated" in the last 5 or 6 years - have been careless practices at restaurants or accidental and minor exposure.

Best & highest regards,

Tom

Proud Father of Rick & Jamie

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Yes, but this is why I deliberately changed NOTHING about my diet or lifestyle when I began the antibiotic protocol.  I was diagnosed with MSi, but I never adjusted my gluten (or any other) intake.  Yet, the last time I saw the guru of MS neuros, he said I no longer qualify to be called an MS patient. 

(I find all this stuff fascinating.  I hope we know all the answers during my lifetime!)

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi there,

I've been gluten free for about 6 years based on a few books -- Minding Your Mitochonria by Terry Wahls and the MSi Recovery Diet. 

Again I haven't gotten the results I wanted from this -- but may be I would be worse if I hadn't gone gluten free.

I recommend both of these books if you are interested in the gluten connection, HOWEVER, I am now inclined to agree with MacKintosh's theory.

Hi HealthyGirl,

You have been gluten free about the same amount of time as Rick and I have been.  In Rick's case - he is way better off than if he hadn't gone gluten free.  His reactions are very severe, but not celiacs - e.g. no stomach issues.  It would be great if MacKintosh's theory turns out to be correct - but we will proceed with all due caution.  Thanks for replying - and I hope things are going very well for you.

Highest & best regards,

Tom

Proud Father or Rick & Jamie

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Tom - I've been gluten-free for about 10 years.  Amongst everything else, I was diagnosed, at one point, as having gluten sensitive enteropathy.  Being gluten-free helped for a while, but did nothing to stop the progression of the neurological symptoms which started 7 years ago.

I'm still mostly gluten-free, but, after 2 years on CAPi, I've tested a few times now, and don't seem to have any reaction at all to gluten anymore.

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

Hi Boadicea,

Thank you for telling me of your experience.  It sounds like the CAPi protocol has helped things with respect to gluten.  Rick would dearly love to be able to eat it again - I'm sure of that.  We have to proceed with all due caution of course - and he may never be able to eat much given the severity of his reaction to gluten.  It would be nice though!  I trust the CAP protocol has helped in other ways - we are hoping & praying it at the least stabilizes Richard - and - of course - we're hoping he can regain some of his lost abilities too.  It would be lovely to take even a short walk in the forest with him again - I miss that with him.  We do take an occasional roll in the forest though!

Best & Highest regards,

Tom

Proud Father of Richard & Jamie

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Hi there,

I think that I should add that I don't intend to add gluten or dairy back into my diet!

I don't want to tempt fate right now.

I'm in the "getting worse" phase so I want to be sure that I'm getting worse due to CAPi and not due      to changing my diet.

I was diagnosed with MSi over 30 years ago, and have been gluten intolerant for 20 years.  My diet has been as gluten free as possible thru this time.

I have been on CAPi for not quite 12 months, and around the 6 month mark I ate a small bit of food with gluten in it and had no reaction..  In the past, foods with gluten didn't appeal to me at all, but I found I was now craving them.  Over a month approx, I introduced more gluten into my diet, and now 100% back on anything I want to eat - gluten is no longer a consideration! It's so good to not have to worry about excluding gluten products, and so nice to eat Anything I feel like.

The CAP treatment has resolved my gluten sensitivity.

 

You warm my heart. ;-)

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Very Cool Tracker - seriously.  I'd love to - and I'm sure Rick would too - eat a slice of peperoni pizza - made with wheat flour. 

Best & highest Regards,

Proud Father of Rick & Jamie....

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

I hear you HealthyGirl.  I'm sure for now Rick will feel the same way - given what Tracker has to say on the subject - maybe we can indulge in a couple of years.  Rick can tell within minutes if he gets gluten in his system.

Best & Highest Regards,

Tom

Proud Father of Rick & Jamie...

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Tom,

We are firmly in the gluten and dairy free camp.

I have had an amazing recovery--not healed from Cpni--but able to get on with my life.

Part of my solution (Wahls diet, supplementsi, gluten and dairy free) was surely going without gluten.

Now I am left with the Cpn bacteria--and I am finally able to face it. It is really peeling off the layers of the onion when it comes to treating this disease--since it affects so many areas of the body. 

My blog, have been tracking my progress, lol maybe a painful read, but most is in there.

How old is your son?

TX--

Katherine

 

 

Hi Katherine,

Thank you for sharing your thoughts and experiences.  I will read through your blog sometime soon.  My son Rick is 27 - the youngest of 3 boys.  He is an absolutely wonderful human being - way more naturally social than I was - though I am professionally a software sales person.  His sense of humor - obvious from a very young age - is priceless.  His courage and grace in the face of his Multiple Sclerosisi - he's now at an EDSSi scale of about 6-7 in only 8 years - is remarkable.  We feel so lucky to have found out about the CAPi Protocol - and hope for stabilization at the least - and recovery of his abilities if at all possible. 

Rick has been off of Gluten for some time.  I believe going off of gluten slowed his progression down substantially - but he has continued to progress.  He is very reluctant to go off of milk products.  I don't know if he actually has to with the CPNi / CAP Protocol.

I trust you are stabilized and improving - it's good to hear about other folks going through all this.

Best & Highest Regards,

Tom

Very Proud Father of Rick & Jamie - and soon to be "Grandpa!"

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Dairy is a big part of my life and I didn't give it up to go on the protocol (which worked just fine).

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Yeah - gluten is much more damaging and obvious to us.  I went off of dairy - and couldn't see a single difference.  Gluten on the other hand - for me - 3 weeks on or off - and the difference is huge.  Night time foot cramps and icy feelings - and day time very warm electric sock feelings - plus something called fascisculations <sic> - all dissappear when I go off of gluten.  Rick gets a LOT weaker if he's exposed to even a tiny bit of gluten.  He is starting down the CAPi protocol path in October, though his doctor may start him with something before he gets that far - Dr. Michael Powell's website talks about things that can be done ahead of the antibioticsi to lower the CPNi load before starting the CAP protocol.

Thanks for writing MacKintosh....

Best & Highest Regards,

Tom -

Proud Father of Rick & Jamie...

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Tom, What you describe sounds like my symptoms just before my MS blew up.  Have you done the NACi test on yourself? 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi MacKintosh,

Yes - I've done the NACi test - no overt reaction though - perhaps a bit of a scratchy throat - but I love to sing - and sometimes overdo it - my Fiance' loves that I sing love songs to her! 

I decided to go and and stay on NAC (2500 mg) as at the least a way to prevent any of the little EBi bodies getting loose - from being fruifull and multiplying - and hoping any more deeply embedded crap would just die over the years...

I am otherwise very fit - walk 10 miles a week - and don't appear to be effected by anything more than an annoying bit of numbness in my feet that won't go away despite being off of gluten for 2 or more years.  I believe I'm effected by Gluten - I also think I likely have a CPNi infection - though for now at least the worst it appears to cause is the foot numbness and bronchitis that won't go away - but is under control.  My Dad died recently - after 3 bouts of pneumonia late in life - (80) - I'm convinced this CPN stuff runs in families - and that he may have had a nasty series of flare-ups that made his Heart Failure worse each time - the CDC "ermeging pathogen" news about CPN and atherosclerosis has me trying to get this doctor to treat me - he's not yet convinced of that - but time may change things.

Rick has had a reaction to the NAC - very encouraging - we are eagerly and a bit tredepitiously awaiting Rick's appointment with Dr. Powell in October - he's the top priority as far as this is concerned - I want, we want - him to be able to chase his children when they have them - to help Jamie around the house - and to be able to walk in the forest - even just a wee bit!

Thank you for writing - I like hearing from you and reading your responses to other folks.

Best & Highest Regards,

Tom

Proud Father of Rick & Jamie

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Oh,

There's another good reason for me to be on NACi - it's a bit of a mucous thinner - commonly used to treat folks with Cystic Fibrosis - and is helpful for my Bronchitis.  Doesn't hurt that it's "endogenous" if I'm not mistaken - e.g. your body already makes some of it.

Tom

Proud Father of Rick & Jamie

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Hi!

In the world of autism treatment dairy withdrawl is the first  step.  We saw a huge change in our son. The reluctance to not let it go could be a sign of an addiction of sorts.

Dairy only takes a week to withdraw--gluten can take a year.  We saw a huge change in our son after the week without dairy.  Another improvement after removing gluten...but that took longer. We believe that every 10% percent matters--this was about an 80% improvement in his Asperger's syndrome.  The rest was gutsing it out with practice, patience and tough love. 

A week without is a short test run--just to see what you see.  And I hghly recommend a test run.  Has to be 100% dairy free--zero.

The belief is that if you respond to being dairy free you will also respond to being dairy free.  What you are treating here is leaky gut.

Eventually we stripped our house of all dairy and gluten.  Intially we would order pizza on a night he was out and then throw the empty box in the neighbor's trash.  lol  We were weenies.  lol  Wow--it made us so sick and uncomfortable that we kissed it good by completely.  

Hope that helps.

Katherine

Hi Katherine,

I greatly appreciate your taking the time to write about this.  Richard cut way down for a bit - he may have even gone completely off of dairy - I don't recall.  He is nearly pristine about Gluten - the only times he gets any "contamination" is at a restaraunt that is supposed to be gluten free, but some kind of cross-contamination happens.  He is very careful.

I will share this information with him.  Other folks have replied - who had gluten or dairy issues - but - after the CAPi treatment for CPni - they are no longer experiencing symptoms.  I think it's possible that CPn can be a cause of "leaky gut" - otherwise why would it go away?  Dont' know of course.

Rick is going to be seen by a Doctor who is very familiar with the CAP Protocol - mid October.  We are hopeful that the treatment will stabalize him - and - assuming he is as lucky as many of the other members here - even get some - and for some - some significant recovery of his abilities.  I would love to take a walk - even a short one - in the forest with him.

Best & Highest Regards,

Tom

Proud Father of Richard & Jamie...

 

 

 

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

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