Tag Archive | EDS

Leaky Gut

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As people began to talk about their multiple issues during a support group meeting for Ehlers-Danlos Syndrome, I noticed that they all had digestive issues in common. Many talked about something called, “Leaky Gut,” “Candida,” “probiotics,” and how wheat was a big trigger. I had multiple allergies and intolerances and there was no way I was going to stay away from another food.

My son had been in to see a specialist and she told me that we should all get off of wheat because of how harsh it is for EDSers and that it may be contributing to malabsorption of vitamins in our food: specifically Magnesium. She also suggested that my youngest son, who was chewing on a paper airplane in her office, would benefit greatly from this, as well. I made a decision to cut down on bread in the house and add in some supplements. (Although, I felt I had no idea what I was doing.)

By the end of the year, I began experiencing Chronic Fatigue, Fibromyalgia, Insomnia, and my other issues had grown worse: Anxiety, Depression, Andenomyosis, Chronic Pain, and now a wheat intolerance. I was already looking into Hyperactivity, Learning, and Behavior Issues for my boys and ran across a natural solution for those things.

 

 

I talked to my primary doctor throughout all of my issues. I asked him about “Leaky Gut.” He said that he wasn’t sure, but it “could be.” He suggested I go to a gastroenterologist for my new issue with wheat.

Gastroenterologist Donald Kirby, MD, director of the Center for Human Nutrition at the Cleveland Clinic says, “Physicians don’t know enough about the gut, which is our biggest immune system organ. ‘Leaky gut syndrome’ isn’t a diagnosis taught in medical school. Instead, ‘leaky gut’ really means you’ve got a diagnosis that still needs to be made,” Kirby says. “You hope that your doctor is a good-enough Sherlock Holmes, but sometimes it is very hard to make a diagnosis.”

Not all doctors make the effort to get at the root of the problem, and that’s what frequently sends patients to alternative practitioners. So…  what if Leaky Gut WERE the root of the problem causing all of these other problems?

My EDS specialist said that most EDSers have an issue with Leaky Gut because we are so sensitive. She also reiterated that eating wheat for us, is like taking a brillo pad to our stomachs. She gave me a list to work on.

 

 

I researched probiotics and was so confused with all the different kinds. Some said the best was in the way it is stored. Some said that it was the kind or how many strains were in it. Some said it had to do with how much you took at a time. I loved the information that came across in webinar for Perfect Biotics. I’m not a purchaser of their product, but the information was wonderful!

 

probioticClick on the Picture for the Video Information to begin.

 

So here, I had been struggling with these concepts and what was best for my family and I. And I ran across Dr. Axe. He said to “think of the lining of your digestive tract like a net with extremely small holes in it that only allow specific substances to pass through. Your gut lining works as a barrier keeping out bigger particles that can damage your system.

“When someone has leaky gut (often referred to as increased intestinal permeability), the ‘net’ in your digestive tract gets damaged, which causes even bigger holes to develop in your net, so things that normally can’t pass through, are now be able to.

“Some of the things that can now pass through include proteins like gluten, bad bacteria and undigested foods particles. Toxic waste can also leak from the inside of your intestinal wall into your bloodstream causing an immune reaction.”

 

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Dr. Axe talks about the many different symptoms caused by Leaky Gut: Bloating, Food sensitivities, Thyroid conditions, Fatigue, Joint pain, Headaches, Skin issues like Rosacea, Excema, and Acne, Digestive problems, Weight gain, Syndrome X, and more…

 

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I like Dr. Axe’s program because #1 not everyone is the same and it’s catered to you, #2 I don’t have to guess how to put it all together, #3 It’s the same thing that my specialist was talking about in changing diet and adding supplements, but exactly how. Feel free to let me know your experiences with Leaky Gut, Healing Leaky Gut, or the different programs to do so.

 

References from Dr.Axe: http://draxe.com/4-steps-to-heal-leaky-gut-and-autoimmune-disease/

 

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 Other Related Articles Include:

Antibiotics Kill

Digestive Health and Healing

 

Magnesium Rich Foods

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Today, I walked into church feeling exhausted, my voice sounded tired, my muscles were tired. I began shaking during Sunday School and went for my emergency bag holding my Nuun tablets. However, later, after church, I laid there exhausted wondering how I could help myself. I realized that this time… I could. Recently, I’ve been finally learning to make and eat healthy foods to save me from a Magnesium drop. So, I began to make things to help my Magnesium levels to rise back up.

 

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First, it has been important to me to know what causes these drops. This helps me to know how I might be prepared for these issues instead of frustrated as I’m learning.

 

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#1 Ehlers-Danlos Syndrome– Because of having this particular connective tissue disorder, my kids and I are naturally deficient in Magnesium.

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#2 Sugar– Processed Sugar, Processed Sugar substitutes, and other Grains and Starches (that turn into sugar in our bodies) not only lower the salts in our bodies (which is not good for #1,) but also allows the bad bacteria in our bodies to get out of control. This can cause a big range of problems including bad teeth, liver problems, insulin resistance, obesity, high cholesterol, and contributes to cancer.

Our culture has been rising in sugar consumption by less than 2% yearly showing on this graph from 1822-2005. “It’s a remarkably straight line, increasing steadily from 6.3 pounds per person per year in 1822 to a maximum of 107.7 lb/person/year in 1999.”

 

 

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#3 Leaky Gut– Too much wear and tear on the stomach lining causes holes which leak food directly into the blood causing many physical issues including, but not limited to, autoimmune issues, major food allergies, and malabsorption of vitamins and minerals.

 

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#4 Hormones– Naturally, the last two weeks of a woman’s menstrual cycle causes Magnesium levels to drop which can normally cause headaches, bloating, low blood sugar, dizziness, fluid retention and sugar cravings.

On a grander scale, low Magnesium can ultimately lead to dysmenorrhea (painful periods,) preeclampsia, infertility, premature births, hypoglycemia, anxiety, obesity and diabetes.

 

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Here are some Magnesium Rich Foods that we are currently enjoying; most of which friends and family have gladly shared their knowledge and time with me… 

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Roasted Garbanzo Beans (Chickpeas)

Originally, I had been frying them, but since burning a hole in the microwave above the stove, I decided to roast them. 450 degrees for 30 minutes.

1 can Garbanzo beans
1 Tbsp Olive Oil
1/2 Tbsp Paprika
1/2 Tbsp Cumin
1/8 tsp Cayenne Pepper
1/2 tsp salt

 

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This is one of the first things I began making. At first my kids stayed far away from it, but after I told them that it was mine… they began wanting it. I have to keep the banana out for one of my children, but it is an amazing source of Magnesium!

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Green Smoothie

1/3 Kale
1/3 Spinach
1/3 frozen Berries
1 Banana
1/2 Water (some use milk, but all use different kinds of milk in our household, so this is best for us. Almond Milk would be the highest source of Magnesium. Feel free to use ice if you don’t use frozen fruit.)

 

 

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Kale Chips

My son made these last week after a friend at church told me how to make them. We all love the taste, and they are super easy to make. I did notice that when I put them away in a ziplock bag or plastic container, that they would become soggy again. I then put them back in the oven. We left them out all night a couple of nights ago, and they were super crispy!

In a bowl, mix Kale leaves with a tiny bit of Olive Oil and salt.
Put them in the oven at 350 degrees for about 10 minutes.

 

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And just adding Avacado and Spinach to your Salad is a great boost of Magnesium!

 

 

 

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This has been a fun learning experience for my family and I as we are changing for the better. I will add more as we learn more. I hope this encourages you today!

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Other Related Articles:

Ehlers-Danlos Syndrome

Magnesium Deficiency

Treatments for EDS

 

 

I Don’t Need Your Approval

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It wasn’t but a year ago that I began this blog. It came out of my desire to remember what I was learning about how to heal from the symptoms of EDS, the desire to pass on information to my kids, and hopefully help others along the way.

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Earlier in the summer, I had attended my first EDS support group and learned many things. I had pain in my hands and  other joints which they affirmed was Chronic Pain.

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And then… something happened at a place where I felt safe… a church meeting. I was told to sit in the back so I could be easily gotten in case of emergency for my Mast Cell son. There was no discussion. I felt singled out. We had already come up with an emergency plan and this wasn’t it. I was so angry, shocked, and humiliated. I balled in the bathroom and was sought out by the person in charge. She didn’t seem to want to listen, but to inform me that her plan was best. At that moment, I could have walked out and never come back. I was ready to.

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A leader there convinced me to wait it out. She prayed with me and listened to me complain. She agreed that it was not the best way to handle things. Another friend did the same thing. My husband wanted to defend me. He made me laugh by saying that they should be rolling out the red carpet for me and having me sit in the front row instead of the back because of how amazing I was.

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I personally experienced stages of grief. And the nerve pain began. Tingling pain from the bottom of my spine all the way up and over my shoulders. Nobody could touch me. My mind became as if in a fog. I was extremely tired, but I couldn’t sleep.

I watched videos on Chronic Pain trying to figure out what to do. I contacted my friend who’d taught me about essential oils and she gave me different samples and suggested Fibromyalgia. I went to my doctor and he made an appointment with several specialists and tests. The tests came back negative. (which I was used to all my life.) One specialist suggested pain reliever or birth control. One was an occupational therapist for the pain in my hands. The other I needed to wait for. So, I set up a blog. And while waiting, I prayed, researched, tested, and when completely confident, posted.

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I had talked to the person in charge at church, told them a little of what was going on in my life, and how hard it was for me to take what had happened. She apologized and has become my biggest advocate there. I had gotten the Fibro pain down within one month with essential oils. I researched diet changes to prevent further problems. When I had finally gotten in to see Dr. Collins, she backed up the information I had gained and added supplements. I had continued therapy exercises to strengthen my hands, as well as, core body strength. I had begun the Dressing Your Truth program and not only felt better in the right texture of clothing and more confident, but I began to understand myself emotionally. My first specialist was ecstatic. I was so excited to share what was working for me with others.

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Since then, over the last year, I have had people who I thought were close friends and family write angry letters and completely turn their backs on me and my family. Each time, I went through a grieving type process. Each time, I have gotten better at handling it, however, I feel the fibro pain begin at the top of my spine threatening to flare up and I know I’m not there,yet.

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But when praying about it this last time, it hit me. I have an Approval Addiction. This need for approval has caused me to become a victim in each circumstance. And when I was rejected, I would turn to another addiction: sugar cravings, facebook, spending addiction, or in the past, anorexia. I was doing this all subconsciously, but I have been doing it for most of my life.

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So, I’m ready to heal another part of my life. I’m ready to take care of myself. I have felt God’s amazing love for me, but it’s okay to love myself AND to not be loved by everyone.

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I don’t need your approval to be the beautiful person that God created me to be. I don’t need you to love me to take care of myself. I don’t need to fall prey to your manipulation and I don’t need to victimize myself. I can call it what it is, stand on my own two feet, and know that I am loved whether you love me or not.



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Climbing out of the Canyon

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Climbing out of the Canyon

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Last year, I feel like I fell into this deep canyon. Many people who had the same thing that I have called it “chronic” with “no cure” adding to feelings of hopelessness. I was experiencing depression so bad my chest ached, pain in all of my joints (Chronic Pain,) nerve pain up my back (Fibromyalgia,) emotional and social pain, severe menstrual pain that made me want to throw up (Adenomyosis,) severe migraines, loss of energy (Chronic Fatigue,) fogginess, insomnia, becoming sick on most foods (Mast Cell), and dizziness to the point of passing out (POTS.) I feared for not only my quality of life, but my children’s. I would not be able to homeschool them, I would miss out on their lives, I would need a caregiver, and they would end up in the same predicament as me in the long run. If I had listened to the voices of hopelessness, I would not be where I am today and it would have affected everyone around me.

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But I prayed. I did not moan with the question, “Why me?” I wanted to know what He wanted me to learn. I sought answers. I did not give up. I listened as one man who had experienced severe allergies to everything (Mast Cell) inspired others on a support group with being able to run after one year of hard work. I have fought my way up this canyon wall learning to use many tools along the way with God, the Master Physician, leading me. It’s still tough. Sometimes, I forget to use the tools and want to quit. But I’m still fighting. Today, I am stable with very little medication (the need for it going down monthly), supplements and nutrition, herbs and essential oils, exercise, emotional healing, and I am not afraid to learn more. I am back to cleaning my house, being creative, feeling clear, excited about life, still homeschooling and teaching my kids what I have learned so they never have to experience what I went through, and rarely ever getting dizzy. (When I do, I have my emergency bag with me.) I feel I am halfway back to feeling healthy and still climbing up on this journey.

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Can I cure EDS? No. But I can live out a normal life bringing out the best in my genes and teach my kids to do the same. I am no longer lying down unable to move, no longer afraid, and definitely not hopeless. I want to bring hope to others with the things that I have learned… and last but not least, be there for my own family. NEVER Give up!!! There ARE answers. There IS Hope. You are NOT alone! May God Bless You on your journey as you Seek Him for the Answers He can lead you to.





Other Related Articles:

EDS Associated Issues

Faith and Encouragement

Magnesium Deficiency

Natural Remedies

Nutrition

Relationships

Treatments for EDS



Homemade Arnica Cream

muscle-relief-creamArnica stimulates the activity of white blood cells, which not only strengthens the immune system, but also digests congested blood and displaces congested fluids in injured tissues, joints, and muscles.

Dealing with Ehlers-Danlos Syndrome, we have a LOT of bruising! I used to get so frantic fighting with my children to keep ice on for a half hour to keep the hematomas down. My mom brought over this cream that she made and I thought, “Why not?” I first began to use it on the bruises all over my kids’ legs. Once or twice a day seemed okay to get the bruises gone within a week. I thought it was neat, but didn’t really know how awesome it was.

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The next time my child got a forehead injury with a lump, I could not fight him to keep the ice on. My mom kindly reminded me to use the Arnica cream. The lump had gone down and did not have a lasting bruise. I was shocked. I did the same the next time I had an injury and I could feel the cream “zinging” (circulating the blood.) After we’d run out, my mom made another batch and added in Comfrey and Yarrow. I noticed that the healing of bruises went down to a couple days for me.

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Not long after, I strained my side for the second time. I decided to try the Arnica cream on it. The previous time that had strained it, my side had taken about 6 weeks to recover. This time it took a couple of days. I then used it on the ankle that I kept spraining and my knee that I kept injuring, to my hips subluxing. I am so impressed by how fast I can heal as long as I keep applying it 2-3 times/day.

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Here are a couple recipes to do plain Arnica cream. You can add other herbs, also to your cream. Make sure that it is the same part of each: If you do Callendula, Arnica, and Comfrey, make sure that its the same amount of each. Example: 1/4 cup Callendula, 1/4 cup Arnica, and 1/4 cup Comfrey. Just don’t let it go above the top of the mason jar and keep room for your oil. (I do not know what is in other store-bought Arnica creams, but I do know that this one has worked for me. I try to be self-sufficient vs. store bought if possible because I do not like additives. Better and Cheaper together equals better over all in my book. My body is very sensitive to harmful additives and I need to be careful.

Arnica  Arnica



WARNING: Do NOT use it on open wounds. It could irritate the wound or cause a rash.

WARNING: Do NOT use while pregnant as it can cause miscarriages.



My favorite way of using the Arnica cream is in a roll up bottle like the ones they make for deoderant (for home) or chapstick (for travel). This way we don’t have to touch it and make a mess.

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Here are a couple of options to buy your dried herbs from:

http://www.starwest-botanicals.com/category/bulk-herbs/

http://www.herbco.com/c-2-bulk-herbs-spices.aspx



Other Related Articles:

Essential Oils

Herbs

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Hip Strengthening Exercises

the stronger you are the better you feel

Since my hips have been subluxing lately, I thought hip strengthening should be the first exercises that I’ll post. I’ve been through physical therapy a few times and learned a few things. I haven’t always stuck with them, but they have gotten me stronger when I do so. My first EDS doctor was a Sports Medicine doctor who kept reminding me to keep up the squats. At the time, I had injured my knee, then had a baby, and had lost muscle in the hip area. He kindly let me know that the lack of muscles in my buttocks area was causing my knees and ankles to turn causing more problems. So, my first thought has been always back to squats. It’s not always easy to do squats. You may not want to cause further injury if you’re not strong especially being EDS. So, as always with Ehlers-Danlos Syndrome:

1) Start slow and Don’t overdo

2) Don’t hyper-extend and Keep good form

3) Keep up the repetitions and add more when ready.

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These two exercise are very helpful. When you gain strength, just add weights. I like to start with 2 repetitions of 10 each. Then I flip to the other side and do that, as well. As I gain strength, I go up to 3 repetitions of 10 each. Then I add weights and start back down at 2 repetitions again.

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You can also do the side leg exercise standing up.

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This exercise has always been one of my favorite, as I learned it with Callenetics when I was a teenager. Callen Pinckney teaches much better form, but these are to gain strength up to do regular exercises. The second picture is for more advanced when you feel ready.

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Fit young brunette pilates instructor showing different exercises on a white background a blue yoga mat. White background NOT ISOLATED




These are simple hip exercises. The goal is to get stronger and do squats without help. That is how you know you’re ready for other work-outs.

strength_squatsStay Zebra Strong!!!!





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Treatments for Ehlers-Danlos Syndrome

Magnesium Deficiency

I have been putting off writing this post for a long time. There is so much that a Magnesium deficiency covers, not to mention finding the right kind of Magnesium! It has been exhausting for me, but WELL worth it! I would like to pass on this information to you.

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So, let me start there. You many be Magnesium deficient if you have these SYMPTOMS:

  • Constipation
  • High blood pressure (Hypertension)
  • Anxiety
  • Depression
  • Insomnia
  • Behavioral disturbances
  • Lethargy
  • Impaired memory/thinking
  • Seizures
  • Fatigue
  • Sleep disturbances
  • Pain
  • Muscle cramps
  • Chronic back pain
  • Headaches
  • Migraines
  • Muscular pain
  • Tendonitis
  • Anger
  • Aggression
  • ADHD
  • Brain fog
  • Tension
  • Anxiety disorders such as OCD

Then, let’s add on mutations. A connective tissue disorder such as Ehlers-Danlos Syndrome causes problems in holding Magnesium (and other salts) in your body. Dr. Heidi Collins talks about how many problems in EDS that are aided by adding Magnesium in one’s diet. Her paper is summarized by Dr. Diana Driscoll here. (both Dr. Driscoll and Dr. Collins have EDS)

Now, if you’ve established that you may have a Magnesium deficiency, try adding foods with Magnesium into your diet. Also cut out sugars, processed foods, and gluten in your diet that are immediately decreasing your Magnesium (and other salt) levels. Personally, I do not even like salt and many foods that have Magnesium in them, so I poured over the food list that includes Magnesium and first chose the foods that I didn’t hate. Now, I am trying foods that I never particularly cared for with different recipes to find a way that I may like it instead of completely dismissing something that is good for me.

First, I knew I liked Spinach. I began adding fresh spinach to the salad that my husband began making for me to get well. Then, I began doing the same with avocados. Next, I began eating tuna salad (albacore without mercury) with veggie chips instead of on bread. I tried an internet recipe passed around on Facebook on garbanzo beans. Now, I’m trying spinach smoothies. (and other green smoothies.) 6 months ago, I would have thought that green smoothies were crazy, however, I figure if I’m not feeling well with what I’m doing, try something new!

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Now, being extremely Magnesium deficient because of EDS and dealing with Chronic Pain and Fatigue and Insomnia beginning 8 months ago, I knew I had to do something drastic. I began searching for vitamin supplementation even before getting in to see Dr. Collins. Even now, after working with her on it, I have found these things to be true:

  1.  There are many types of Magnesium
  2.  Because every body is different, one Magnesium that works for me, may not work for you. Dr. Collins suggested that Chelated Magnesium was the best for those of us with EDS, however, my body did not absorb it… it simply did not improve my health and quickly left my body. There is only one that has worked for me to improve my health.
  3.  Magnesium Citrate is the fastest way to get it into your body. This is also the type that I’m able to give my children with EDS who cannot swallow pills.
  4.  You need other vitamins with your supplementation that help your body to absorb Magnesium: Calcium, B6 and Vitamin D3. This is easier to do with food intake rather than supplementation, but when you are extremely deficient, consider these vitamins, as well.
  5.  Calcium supplementation ratio should be Calcium 1.5-Magnesium 1 (Calcium 150-Magnesium 100 or Calcium 200-Magnesium 130)
  6. You can overdose on B6 causing neuropathy. My favorite supplement is vitamin B50 which has the FDA limit of B6, but also other B vitamins in it.
  7.  Taking Magnesium in the morning is best. I had been trying to do 1500mg before bed and waking up not feeling so well still. Taking a bunch of salt before bed, before not eating for a large amount of time, can cause hypoglycemia. I do not have a problem with that, but lack of salts in my body acts the same way. I have always had to eat every couple of hours. I do not need to cause another problem. But having the right amount of Magnesium at the right times can stabilize insulin. The Magnesium that I currently take says to take 3 times a day, so I take it with food.
  8.  Taking Magnesium with Iron will cancel out both vitamins. I take Magnesium separate from my Vitamin C and multivitamin.
  9.  Foods with Magnesium in them absorbs best.
  10. Do not forget that salt and water work together. One is supposed to drink half their body weight in oz. of water. If you are taking a ton of salt with no water, you will dehydrate.
  11. Exercise, even just taking a walk, is extremely helpful in maintaining health.

These things have been helping my family and I to heal from Chronic Pain/Fatigue, Insomnia, Hyperactivity, Allergies, Joints that easily pop out of place, and Easy bruising. When your body is well in other areas, you do not get sick as easy. Another thing I like to do to help to not pass out (POTS) is to add Epsom salt to the bath water or plug the drain to do so while showering. Also Magnesium spray onto my areas of muscle pain. It absorbs quickly into the part of my body that needs it. Carrying around Magnesium tablets with me have also been a life-saver when I am out and have an episode of my blood-pressure dropping. I hope this has helped or will help you in your journey. Here are a couple of other videos that have inspired me.

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Dr. Terry Wahls talking about her journey with MS.