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picksjr

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Reply with quote  #1 
Hi all - please see my past posts for some history, but the bottom line is that I have not suffered a CVS episode in nearly seven years after changing my diet. 

The links between mito health, your gut, diet and CVS just made too much sense to ignore.  marksdailyapple.com was a gigantic resource and a guide to primal (paleo light) eating and NO MORE CVS EPISODES.  Not only that but energy level increased, better sleep and mood, no more bloat, lost 20lbs. 

I cut out grains, refined sugars, wheat, processed foods.  What's in an average meal?  Protein, vegetable, fruit.  I'm fine with dairy so yogurts (not the sugary ones, greek), milk, cottage cheese and (thank the Lord) Haagan Dazs Ice Cream (vanilla with its 5 ingredients).  Dark chocolate is great.  Drink water, tea, coffee (no sugar or cream!).  After the diet change I felt better within weeks, pretty amazing!  I was taking a boat load of supplements (CoQ10 etc) but have since eliminated all of them with no ill effects.      

It's been suggested that maybe I never had CVS, maybe I had celiac disease or a gluten sensitivity or who knows what else.  I just had labs done a couple of weeks ago and my GP ran a Deaminated Gliadin AB IGA that came back normal = no celiac disease.    

CVS is horrible, debilitating, I feel for anyone going through it.  If you haven't tried a diet change yet, I would ask that you consider it.  If you want a great resource, try marksdailyapple.  I've shared this food pyramid with a lot of people - http://www.marksdailyapple.com/introducing-the-new-primal-blueprint-food-pyramid/  

Worst case scenario is that you may be eating healthier, best case is that you eat healthy AND cure your case of CVS.  God bless! 


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wynnak

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Reply with quote  #2 
I’m so glad you have found something that works. A lot of what was eliminated sounds like the migraine microbiome diet that I have heard doctors suggest. I have seen people go vegan, vegetarian, paleo, raw.. you name it I’ve seen people try it. My son tried the migraine one as well as the histamine diet.

I’m so glad you shared what worked for you. Thank you!

There is not one diet that seems to work better than others. It’s like the treatments that work for some and not for others. My son was not successful on CoQ10.. I liken it to that. Wonderful to have the info and options to try. We went through so many ourselves.

Thanks again. We love to hear back on what is helping people!

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Blynda
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ginny

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Reply with quote  #3 
Terrific suggestions!  Thanks so much, very happy you are well.



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ginny CVSA Moderator
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Mommy_sick2

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Reply with quote  #4 
I have tried to alter my diet so many times. I know that must be a key to getting better. My problem is getting to a place where I can. Each time I try to I cycle. I go into crisis mode and back on lots of sugar to hold anything down. It is a pattern I can't break out from. How did you find footing with food?
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ginny

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Reply with quote  #5 
I don't know that food is a cause of CVS just that some ingredients are a trigger --for some people but not all.  With CVS, the thought is that you need energy.  Sleep helps reset the brain and helps energy.  I know others who carry hard candy with them in case they feel a cycle coming on.

Usually the various dietary approach to CVS has additives removed from food. These are the people who report that diet has helped them.  There are many different diets but as Wynnak has noted, all involve "healthy" eating.

The thought process on CVS is that it is likely a Neuor-Mito disorder, a functional (symptoms but nothing can be found wrong on testing) condition.

Try eating a diet without fried foods and maybe fruits and veggies lightly cooked ( in case you have difficulty with raw).  Try staying away from MSG, soy, and generally less than 5 ingredients in a produced product.  This might or might not help but most seem to not do well with MSG and Soy. Be  aware of hidden sources of these, for example vitamin E will often be soy derived.  Popular brands of salad dressing will usually have soy and might have MSG.

You might review the Migraine Diets, the CVS Supplements, regular rest, keeping stressors down.  If you go to the CVSA Web Page under the Patients Tab, there is a Journal and an Episode Diary you can download and use as a (hopefully) helpful guide.

Do you have a preventive plan?  Meds to help you during Prodrome?  Don't beat yourself up.  CVS is tough.  Not everyone is the same.  You probably need the sugar when you grab it, quick fuel to your body.  Try to prevent this need.  And keep records to see if you can start to figure out your triggers.

Also, watch your gastric emptying.  Be sure you are not thinking runny stools are diarrhea as they can sometimes be runny because you have dried up stool that the new stool needs to run past.  If things do slow down, this can be a sign of an impending episode.  Try to stay very regular.  Lots of posts on here regarding this and some of those people have remained well by better bowel movement control.

Please keep us updated.  


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ginny CVSA Moderator
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