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Diet Changes for EDS (Ehlers-Danlos Syndrome)

Tips that helped my fibromyalgia, breathing, allergies, easy bleeding and related problems

Part I


Also see Diet for EDS - Part II

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Overview - What My Basic Problems Have Been

I've been working with a nutrition oriented doctors and a nutritionist this last year or so, and I must say I've learned more about what's really been wrong with me in the last couple of years than I did in the previous four decades of my life. I was helpful to finally get diagnosed with Ehlers-Danlos syndrome because it provided a rational link for all of my diverse symptoms, but the diagnosis itself didn't help me to improve my health since EDS is considered by most doctors to be an inherited genetic disorder with no known cure.

Bit by bit, I've been assembling pieces of information about my health problems, researching nutrition and lately everything has been starting to all fit together and make sense. I figured out on my own that I probably had deficiencies of zinc, magnesium and vitamin K. I had a lot of symptoms linked to deficiencies of these nutrients that went away when I improved my diet. The nutritional testing the conventional medical doctors did always showed up that I had no nutritional deficiencies, which never made any sense, since it seemed like I must have some based on my symptoms.

However, when I switched to a nutrition oriented doctor who did the more sensitive cellular kind of nutritional testing, I found out I had B12 and biotin deficiencies, which made a lot of sense, based on my health problems. Next I had allergy testing which showed I was allergic to dairy products, yeast, mold and vinegar. The new doctor I started seeing told me I may have a yeast overgrowth because of my coated tongue. Then, through my own research, I found out that biotin deficiencies were common problems in people who had systemic type yeast infections, and that biotin was one of the treatments for systemic yeast infections.

So now everything is starting to make sense of what has been wrong with me all of these years. Nutritional deficiencies caused my body to be unable to activate the right enzymes needed to digest some foods, especially milk. Undigested, fermenting food in my stomach caused allergic reactions and irritable bowel problems. (See my related section on irritable bowel syndrome diet). It also caused me to have an intestinal environment that was overrun with yeast and harmful bacteria, and lacking in the beneficial bacteria needed to synthesize nutrients like vitamin K and the B vitamins, especially B12 and biotin. The vitamin K deficiencies I had kept my blood from clotting, which is why I've always had so many bleeding problems, including the heavy periods and nosebleeds. Magnesium could not be absorbed properly without the B vitamins it needed as co-factors, which led to magnesium deficiencies, and so on and so on. I could write volumes of how one of my problems probably cascaded into another, but I think you get the idea. I may have had a genetic predisposition to have a connective tissue disorder, but clearly it wasn't only due to genes. If it were only genes, I wouldn't have gotten so much healthier just from changing my diet.

There is a chart in my section on beneficial bacteria that illustrates a likely scenario of what was wrong with my digestive system, and may be a factor in other people with similar types of problems. Dr. Eldon Hass has a good article on the Healthy.net site on allergies, nutritional deficiencies, digestive problems and yeast infections. When I read that article, and a light bulb really went on in my head. I could be the nutritional deficiency-allergy problems-yeast infection poster girl for this article. I don't follow all of the recommendations in the article, but some of the suggestions have helped me.

The following is a list of changes I've made in my family's diet that seems to be be really helping us. Remember, though, that everyone is different, and these may not necessarily be the best changes for you or your family.  Plus, I'm always reading about nutrition and always trying new things, so this list is going to change over time.   Even within my family, we each seem to have different reactions to certain foods and different health issues, even though we all eat similar diets.  My family's overall health improved through changing our diets to stop being vegetarians and adding meat, but this may not be the best choice for everyone. 

I believe that Dr. Roger Williams had the right idea when he coined the term biochemical individuality, meaning we are all unique and have different dietary needs.  I personally believe that part of our dietary requirements today are based on what genes we may have inherited from our ancestors, and that their genes were influenced by their environments - whether or not  they ate grains, how much sunlight they were exposed to, whether or not they drank milk, were vegetarians, etc.  Michael Crawford has some thought provoking ideas on food availability and evolution in his book, The Driving Force.   

The book I found most helpful in changing my diet was Super Nutrition for Women. It really opened my eyes about how I was not getting enough minerals and fat in the low fat, high carbohydrate diet I had been on before I read this book. Another book by the same author, called Your Body Knows Best, is also very good.

The following sections list out the diet changes that helped my connective tissue disorder symptoms (TMJ, fibromyalgia, allergies, mitral valve prolapse, bleeding problems, etc.)

 Elimination diets  

We cut out wheat and dairy for awhile, and then tried it again.  My husband and I both noticed that we got congested and/or our noses started running immediately when we eat these foods again, so we really try to limit them now in our diets.   My "official" allergy tests I had done through my doctor, showed I had sensitivities to milk, yeast, molds and vinegar. But I think wheat is also a problem for me, too.

For most of my life I was pretty slender, despite the fact that I seem to eat eat more than many of my friends who weigh more.  I've noticed now that since I eliminated whole wheat and dairy from my diet, I have put on weight.  I suspect that a wheat intolerance was interfering with my food absorption and also my ability to absorb proper nutrients, and now that I am no longer eating whole wheat, high fiber grains, I'm not only putting on weight but getting more nutrients.  I'd actually like to lose some weight now, but I'm going to try to never be underweight again.  I actually have a lot less health problems being overweight than I did when I was a size 6.

My husband gets worried every time I mention going on a diet. He says he doesn't want me to go back to being a skinny, walking health wreck with translucent, wrinkled skin like I used to be. Though I could stand to lose a few pounds, overall I feel a lot better at the weight I am now.  And I know if I ever want to be thin again, all I have to do is go back to my old diet. But I'd rather be a little bit heavier and healthier.

I have been reading up on Celiac disease (gluten intolerance) and I do have, or have had, many of the unusual features that have been associated with the disorder.  These problems include conditions such as bleeding problems (Celiac can cause vitamin K deficiencies), peculiarly low cholesterol levels, odd white spots in the corners of my mouth, anemia and rachitic skeletal features (pectus excavatum, scoliosis, bowed limbs).    

In my family's case, we believe we can have healthy diets without a lot of dairy products and wheat.   Most of the people in the world are actually intolerant to dairy products, and wheat is one of the highest allergenic foods.  
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Red meat and grain intake 

After reading nutrition books, I found out that white spots on fingernails are associated with zinc deficiencies.  I had tons of these white spots on my nails growing up. My children and husband had a few until I started changing our diets. A year ago, we followed the advice in the book Super Nutrition for Women, and started eating more foods with zinc, including red meat.  We also limit our intake of grains, such as wheat, which contain phytic acid, which can interfere with the absorption zinc and other minerals.  

The white spots then disappeared.  They reappeared in my children last year over the Christmas and New Year holidays, when we were eating a lot of junk and eating out at restaurants while on vacation.  As soon as we returned home and went back to our healthier diets, the white spots disappeared again.  

Zinc deficiencies are associated with upper respiratory infections, and since we started getting more zinc in our diets, and made other dietary improvements, we have only had about 20% of the colds and infections we used to have.  My children used to be on this endless cycle of ear/sinus infections followed by antibiotics followed by more ear/sinus infections followed by more antibiotics.  I feel so stupid now for not questioning this conventional mode of medical care for them much sooner.  Since we've changed our family's diet, we've been off the antibiotics treadmill.  I can't remember the last time anyone in our family needed antibiotics, whereas before my children were on them at least every other month, especially in winter.

My husband and I both used to have problems with facial blemishes, even as adults.  We are in our forties, and we used to wonder how old we were going to have to get before we stopped having our faces breakout.  Interestingly, zinc deficiencies are also associated with acne, and when we changed our diets to get more zinc, the facial blemishes stopped for both of us.  I suspect it was not a random coincidence, but rather a simple case of cause and effect. 

Zinc deficiencies have been shown to cause rachitic skeletal features in animals, and I do wonder now if that was not at least a a part of the reason I developed scoliosis and pectus excavatum as a child.  My husband has a very mild pectus deformity, too, and he also had lots of the white spots on his nails as a child and teenager.   We both had lots of stretch marks as teenagers, which is also thought to be related to zinc deficiencies.  We're hoping that getting more zinc and some of the other dietary changes we've made will keep our children from developing the same problems we had. 
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I buy whole chickens, lean beef with bones or parts of turkeys and cook them in in water to make soup and for broth.  Broth is an old home remedy for allergies and, at least in my family, it is one of the home remedies that does actually seems to work.

This really seems to help my joint pain and breathing. My husband seems to have the same benefits. I'm not sure exactly why, but perhaps there is something in those bones that my body needs.  I've read that this is a good way to get silicon, and that it is hard to obtain significant amounts of silicon from other sources.  I've also read that bone marrow contains a lot of vitamin B12. The vegetables in the soup are high in vitamin K and magnesium, which may also help. In any case, making soup with bones and it does seem to help my joints and breathing. Our kids will eat rice more readily than soup, so sometimes I make them rice with broth.

One thing to note is that if we eat too much broth it does seem to raise our blood pressure, so we try to eat a balanced amount of these foods.

Related link: Traditional Bone Broth in Modern Health and Disease

One of my friends with asthma started making homemade soup with bone broth and lots of vegetables, especially greens. She reported that both her breathing and her stomach problems improved within a week.

Click here for articles on chicken soup as a cure for asthma and other breathing problems.

Is chicken soup an essential drug? - From the Canadian Medical Association Journal

New study supports chicken soup as a cold remedy - from the American College of Chest Physicians (ACCP)

Continued at
EDS Diet Changes - Part II






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