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Ehlers-Danlos Syndrome :

Diet Changes I Found Helpful

Diet tips that helped my fibromyalgia, breathing problems, allergies and bleeding problems

Part II

 
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Part II Contents:  

 

 

High fortifications of single nutrients  

We've read that too much iron (and probably too much of any nutrient) can throw your body chemistry out of balance and contribute to other nutritional deficiencies.  We noticed that our kids' vitamins had 100% of the RDA for iron and then many of their cereals had as much as 50% of the RDAs of iron, too.  So we try to see that our kids get enough iron, but not too much of it in relation to all of their other vitamins and minerals.  I personally found that foods and supplements that contained high amounts of magnesium antagonists like iron and calcium (especially cereals and most multivitamins) seemed to increase my symptoms of mitral valve prolapse.

The same type of problem may be true for high calcium fortifications.  Many foods these days are fortified with calcium, however, this concept ignores the fact that calcium is needed in balanced amounts within the body in relation to other minerals.  We've read that too much calcium can cause deficiencies of other minerals like zinc and magnesium.  It has been proposed that a nationwide imbalance between calcium and magnesium levels may be responsible for recent increases in asthma rates.   So as with iron, we try to see that our family gets enough calcium, but not too much of it in relation to other vitamins and minerals.
 


Empty calorie foods
 

We read in Discover magazine about a study of 15 lb. howler monkeys in Panama that showed they had diets that exceeded the National Research Council's recommended dietary allowances for a 150-pound human -- which Americans often don't meet.   When you think about it on a nutrient per pound basis, it is really an eye opener. 

This made us realize how far our current diets likely had diverged from those of our ancestors, who probably ate a lot of whole foods just like the monkeys in the article.  We try to eat as many nutrient dense, whole foods as possible.  We limit food like snack foods, most fruit juices and sodas. 

I've noticed that I get a lot less sinus and bronchial infections when I cut out sugar. My husband and older son used to have problems with getting hoarse voices, especially in the fall and winter. They both stopped having problems with their voices as soon as we cut way back on sugar. Sugar is one of the foods that is supposed to be limited on anti-yeast diets, too, so that gives us another reason to limit sweets.  


Raw fruits and vegetables 

Raw foods have enzymes that can get destroyed in the cooking process, and many nutritionists believe these enzymes are important for our health.   We include some raw foods in our diets, but also many cooked foods, too.  Our rationale is that people have been cooking foods for a long time and we think that cooked foods may be a part of our ancestral diets, too.  We find we can eat a lot more fruits and vegetables, and therefore a lot more nutrients,  when we cook them, as the cooking process reduces their size and increase their digestibility. So we hedge our bets by eating a mix of both cooked and non-cooked fruits and vegetables. 

 



Probiotics 

Probiotics, such as lactobacillus acidophilus and lactobacillus bifidus, replace the helpful bacteria in human stomachs that can get destroyed from taking antibiotics.  These bacteria are needed in order to aid in digestion, enhance absorption of nutrients, especially magnesium and the B vitamins, and to synthesize vitamin K.  Some researchers think that our main source of vitamin K comes not from our diet, but from synthesis by beneficial intestinal bacteria.  Vitamin K is needed to build strong bones and to clot blood properly.   A friend of mine from Denmark tells me that taking probiotics, or eating cultured yogurt that contain beneficial bacteria, after taking antibiotics is conventional, mainstream medical treatment in her home country. 
 


We eat more leafy green vegetables 

Leafy green vegetables are very nutrient dense foods that include high amounts of vitamin K, calcium and magnesium, all important nutrients for good bone health.  One of the suggestions in one of my antique medical books to prevent scoliosis is eat a diet high in leafy green vegetables.  This is interesting advice, as recent studies show scoliosis is often accompanied by osteoporosis or osteopenia, and recent studies have also linked low levels of vitamin K to osteoporosis.  Perhaps the old fashioned doctors who wrote these antique books knew what they were talking about in this instance. 

My children will eat spinach and other greens if I put them in vegetable soup.  I also buy a big bag of mixed greens each week. My kids will eat a few fresh leaves with each meal, so by the end of the day, it adds up to a full serving of vegetables high in vitamin K.

Before I started taking probiotics and eating more leafy green vegetables, I used to have problems with menorrhagia (heavy menstrual bleeding), ovarian pain, nose bleeds and other bleeding issues from vitamin K deficiencies. My blood just didn't clot properly without sufficient vitamin K. I noticed that after awhile of eating more vitamin K I didn't have any more bleeding problems. In fact, over time I developed symptoms of high estrogen levels and my platelet count became elevated out of the normal range. So I cut back on eating the amount of vitamin K and saturated fat. Then I increased the amount of fruit to get more salicylates. After making these dietary adjustments, my platelet count returned to normal within a few weeks.

Check with your health care provider before making any dietary changes that can alter your intake of vitamin K, especially if you have cardiac concerns or are taking anticoagulants.  Eating more foods with vitamin K has been shown to clot the blood, and for some people this can be dangerous. Also, bleeding problems may have many different causes and should always be checked out by your health care provider.  
 


Salicylates 

I also found it helpful to watch my salicylate intake to prevent bleeding problems.  Fruits and nuts are high in salicylates, which can block the action of vitamin K.  We still eat them, but we just don't eat too many and we try to balance the amounts of fruits and nuts in our diets with salads and other foods high in vitamin K.   For more on this topic, visit my page on salicylates and other foods that thin the blood.
   
All of my life I have had problems with heavy periods, abnormal uterine bleeding, blood in my urine, nosebleeds, easy bruising and once, an eye hemorrhage.  I've been anemic multiple times from losing blood.  Even one aspirin used to trigger some type of bleeding problem in me.   Many different doctors, including a hematologist, could find nothing wrong with me, though none of the doctors I went to ever mentioned a vitamin K deficiency or asked me about my diet.  

Interestingly, in my last bleeding episode, my family doctors kept putting me on antibiotics and had me drink cranberry juice for the blood in my urine, which they thought it was a sign of an infection.

I found from doing my own research that antibiotics can kill the stomach bacteria needed to synthesize vitamin K, and that one of the side effects of long term antibiotic usage is blood in the urine. Cranberry juice is extremely high in salicylates, which can also block the action of vitamin K.  In hindsight, it did not seem wise to prescribe these treatments to an aspirin sensitive individual with a history of bleeding problems. It is no wonder why I was bleeding uncontrollably.  

My ob/gyns wanted me to take birth control pills to stop my menstrual bleeding.  I had to keep pointing out that these were all stop gap measures that were not addressing the root cause.   I obviously had something systemic wrong with me -- I was bleeding from everywhere except my ears.  Birth control pills were unlikely to help my hematuria. Antibiotics were unlikely to to stop my nosebleeds.  Logic told me that my blood was simply not clotting.   If I had not done my own research, I do wonder if I would have eventually died from some type of internal bleeding.  
  
When I stopped the antibiotics, stopped the cranberry juice, replaced my stomach bacteria with probiotics, limited other food with salicylates and started eating a big salad with greens every day, my bleeding problems from a vitamin K deficiency stopped completely.
  
As noted above, for many people having blood clot more easily can cause serious problems, especially people with cardiac conditions.  While changes were right for me, they may not be the best diet changes for everyone.

 



Preservatives 

Preservatives in foods have been implicated in a wide variety of allergic reactions.  Sulfur is a common ingredient in some preservatives, and too high of a sulfur intake can interfere with copper and molybdenum levels. Copper deficiencies have many of the same symptoms as connective tissue disorders, especially Marfan syndrome.  Many preservatives also contain salicylates.   We think that avoiding preservatives won't hurt, and it may help. 
 


Low fat diets 

While a low fat diet may be good for many people, I'm not so sure it is the best diet for a family where most of the people are thin, especially with thin growing children with family histories of osteoporosis.  Weight is one of the biggest indicators of bone densities, and people need fat to put on weight.  Fat, especially saturated fat, is also known to promote higher estrogen levels, and high estrogen levels are associated with increased blood clotting and higher bone densities, which to someone with problems like the ones I had, were desirable conditions. 

Low fat diets are probably very good advice for people who are overweight, as many Americans are.  They are also probably great diets for people with breast cancer, a condition associated with high estrogen levels, high bone densities and blood clots.  But cancer is very rare in my family.  My family problems are mostly conditions known to be associated with lower estrogen levels - bleeding tendencies and skeletal problems related to low bone densities, such as scoliosis and osteoporosis.  Despite conventional medical dogma about the virtues of low fat diets, I'm not convinced a low fat diet is best for everyone, especially someone like me.  

We don't go overboard on fat, but we do not eat a low fat diet.  For some reason, using lard for cooking once in awhile instead of vegetable oils also helps. I don't use lard all of the time as I don't think a whole lot of saturated fat is good for us, but once it a while it doesn't hurt. I seem to breath better after eating foods cooked with lard than foods cooked with vegetable oils. I don't know why. I suspect it is because most vegetable oils are high in vitamin E, which blocks vitamin K.

For people like my family, I do not believe a low fat diet is best.  It goes back to  Dr. Roger J. Williams ideas, that there is no one diet that is right for everyone.  

A great book that addresses why some people do better on higher fat diets is "Your Body Knows Best" by Louis Ann Gittleman. Here's an excerpt from a review of the book:

"There's no one-size-fits-all diet, says author Ann Louise Gittleman..... That's why some people will drop 25 pounds on fad diets while others will actually gain weight, and why some folks thrive on an ultra-low-fat diet while they make others feel like collapsing."

I highly recommend this book as well as her book, Super Nutrition for Women. Ms. Gittleman is one of the few popular nutrition writers around who understands that low fat, high grain, low red meat diets are not good for everyone, and that for many people they can actually be an impediment to good health.

Also see my web page on Low Cholesterol: The Overlooked Health Risks for more information on cholesterol and saturated fat.

 
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Five to ten servings of fruit and vegetables. 

We each eat lots of fruit and vegetables each day, at least 5 - 10 servings.



Coffee 
  
I don't drink coffee.  It really aggravates my pain problems and gives me insomnia.  I am very sensitive to coffee and chocolate.  So is one of my children.  Some literature notes that coffee is high in salicylates.   


 Natural blood thinners - garlic, onions, cayenne pepper, vinegar  

In order to get my bleeding problems to stop, I limited my intake of anything with known properties that can reduce blood clotting.   Garlic and onions are known to have anticoagulant properties.  Cayenne pepper and vinegar are high in salicylates. It used to be that if I ate enough of these, I would start to bleed somewhere.   

Many foods are being preserved with vitamin E, which can also thin the blood, as it blocks vitamin K.  I was having problems from rice cakes, which seemed odd.  Then one day I realized they were preserved with tocopherol (vitamin E).  Now I buy the unpreserved kind of rice cakes. (Click here for an article on vitamin E, including its interactions with vitamin K. ) 

Remember, this advice is not for everyone, and could be the opposite of what many people need.  Many people in the U.S. have problems with their blood clotting too readily. 
 
 



Sulfur  

We eat eggs, but not every day.  Eggs, onions and many cruciferous vegetable (broccoli, cauliflower, etc. ) contain high amounts of sulfur, which has been associated with reduced copper levels.  Copper deficiencies share many features with connective tissue disorders features, including aneurysms.  I have two relatives who have had aneurysms, and both had other connective tissue disorder symptoms, so I watch anything that may suppress my copper levels.

Sulfur is also known to reduce hydrochloric acid levels, which can cause absorption problems. It may explain why a lot of high sulfur containing foods show up on lists of foods to avoid for intestinal gas problems.  
 

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