stomach-vs-heart:

Each Ehlers-Danlos experience is individual specific. No two Zebras look alike but there are often key similarities across many cases.

A common trend within the Ehlers-Danlos community is the struggle to maintain weight due to a plethora of issues common to the syndrome.

Unfortunately, this trend is common to my case along with a compilation of metabolic, digestive and biliary diagnoses and a dash of surgical complications to make matters worse.  For the last ten years I’ve struggled to maintain a healthy weight but each time my invisible disease process flares up my weight plummets alongside my wellbeing. Usually, I recover my weight when the flares calmed down but lately the flareless times are few and far between. Over the last two years as my functions decline further I’ve lost 50 pounds of weight, most in the form of muscle. This is despite my best efforts to routinely exercise and eat a healthy diet considerate to my EDS related dysfunctions.

My body shows the obvious signs of malnutrition. My energy levels and activity tolerance reflect the negative impact. Each of my systems displays nutritionally related dysfunctions and it’s only a matter of time before the inevitable suggestion of enteral or parenteral feedings will come up again.

From all I can tell, taking the step to go on long-term parenteral or enteral feedings comes with consequences capable of negating any good to be gained from the intervention. Nonetheless, as the weight loss continues so does the risk increase for complications related to malnutrition. It quickly becomes a slippery slope in Ehlers-Danlos Syndrome and it is one I would like to avoid for as long as possible.

I am no stranger to parenteral nutrition.  My lifetime total is 15 weeks of IV nutrition over the course of the last ten years. Currently, I have a mediport in place from my last round, ready to go if needed.

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When it comes to what I eat, we keep it pretty simple because what with my food sensitivities, early satiety, and GI distresses there are not a lot of choices. Depending on which GI symptoms are flaring there are often periods of 3 to 5 days where I cannot tolerate food at all. I am primarily vegan because of spiritual reasons; however, as my issues become more complex I some of the supplements I use contain gelatin. I am struggling with but looking for a solution soon.

It’s hard to know what to do but after ten years of this crap I’ve got a few tricks up my sleeve in keeping my weight just above “underweight.” Over these last months, I developed a system working well for me and would love to share this with other Medical Zabras facing the same struggles.

This post contains affiliate links for the products recommended in this article. That means if you purchase a product I recommend I get a commission for the purchase. This is an easy way to support the efforts of this humble blogger. Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome aims to provide Medical Zebras with sincere product reviews and recommendations helpful towards improving the quality of that chronic life!  Please see the Disclosures page for more information.

#1 ProSource Medical Nutrition

My amino acid analysis indicated I was severely deficient in all nonessential and essential amino acids. When we added it up my daily protein intake I was getting less than 10 grams of protein daily compared to the recommended 60! I am a vegan and in order to get 60 grams of protein, I would need to eat a great deal of food throughout the day and my belly will not cooperate. As mentioned at this time I am incorporating some sources of protein containing gelatin. I would love to hear from other vegans running into this issue and learn what options are available! Nevertheless, for now I am using ProSource medical Nutrition to supplement the protein I can’t handle in bulk.

Medical Nutrition USA ProSource Plus Liquid Protein

The nutritionist at the hospital was experienced with Ehlers-Danlos patients, considered my food sensitivities and recommended ProSource Liquid Nutrition. While not covered by my insurance, I was able to purchase a 32 fluid ounce bottle on Amazon for less than 40 bucks. Each ounce contains 15 grams of protein. I supplement my diet with two ounces daily thus making a bottle last 16 days. This formula also contains a collagen supplement which is highly recommended for any patient with Ehlers-Danlos Syndrome regardless of nutritional status.

This stuff mixes with any liquid but I recommend just holding your breath and throwing it back as quickly as possible. It doesn’t taste horrible but it certainly doesn’t taste good. Prolonging the not bad/not good taste any longer than necessary is counterproductive for me. Adding it to water makes me nauseated and I can never finish it; However, ginger ale is more tolerable. Still, getting it over with is my best advice. I drink a swig in the morning and a swig at night. It doesn’t need refrigerated so I can keep it by the bed for easy access.

The supplement is especially great on days when eating meals are difficult. There are 100 calories per ounce so adding a couple shots to a bad day keeps me from getting too loopy from lack of intake. This formula only lists milk as an allergen so people with dairy issues might have troubles with this product. I am sensitive to dairy but get minimal reaction from this formula. I am pretty much always nauseated and bloated so it’s hard to identify triggers anymore but I think the reason is because the milk is in the form a Whey isolate which doesn’t contain lactose. Either way, sometimes there is a risk benefit analysis with delayed sensitivities and weight maintenance so I am giving this a go for about a month now and I see some improvements without serious reactions.

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#2 Purely Inspired Organic Protein Powder

Purely Inspired Organic Protein Shake, 100% Plant Based Protein, Decadent Chocolate Flavor

This is the best vegan, gluten, and soy free protein powder I’ve found to date. It’s a great deal for 1.5 pounds all for under twenty bucks! Each serving counts for 20 grams of protein. I enjoy the taste of this over some of the other vegan protein powders I’ve used over the last several months because its intense chocolate taste and it mixes in easily with smoothies. No dry pockets! Most importantly, if I must  get most of my nutrition from smoothies it should at least taste like decadent chocolate!

This is the core supplement added to the smoothies my hubs whips up for me at least once a day. He uses Silk Pure Dark Chocolate Almond Milk as the liquid of choice because it is gluten, soy and dairy free and because it makes it even chocolatier!  We stock up on frozen organic fruit for cheap in comparison to grocery store prices to save money and give the smoothies a milkshake consistency. This marks the foundation for a yummy smoothie packed with high end nutrient content making Boost and Ensure look like toxic sludge.

Avoiding toxins and processed crap is a huge part of my symptom management plan. Eliminating these things from my diet improved my symptoms dramatically years ago so to the point I believe I cured myself. My joint pain increases within ten minutes of eating triggering foods as does a variety of systemic symptoms. It’s not worth it even with the money saved on non-organic groceries. While going organic and avoiding processed foods will not cure any disease there are many research studies with solid data lending  to the idea that it will reduce the severity of countless chronic conditions.

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# 3 Cacao Nibs

Navitas Naturals Organic Raw Cacao Nibs, 4 Ounce by Navitas Naturals

These little bits of cacao goodness are a game changer in smoothies. Cacao is a superfood packed with antioxidants and natural compounds known to reduce stress, anxiety and increase the pleasure senses. Adding this to my smoothies increases my intake of protein and nutritive compounds without adding the bulk that often aggravates my GI distress. These nibs also taste AMAZING on a peanut butter and jelly sandwich!

I only learned of the benefits of Cacao of few months ago but so far it’s not triggered any of my sensitivities. Cacao is known for its euphoria-inducing properties, similar to chocolate but far superior when considering nutritional content. Just a few weeks ago I saw this video about Cacao being the new club craze because of its ability to increase the body’s production of the “feel good” chemical mediators dopamine and serotonin.

While I won’t be snorting any cocao any time soon, I think the history and benefits of cocao are worth trying it out. The flavor is similar to a very dark, rich chocolate and the consistency is like chocolate chips (swoon!)

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#4 MCT Oil

Left Coast Performance Coconut MCT Oil, 32 oz from Left Coast Performance

As mentioned early, my collection of GI issues further challenge my efforts to maintain weight. The latest discovery was fat malabsorption due to exocrine pancreatic insufficiency. In my case, this was likely a direct result of my battle with ERCP-induced pancreatitis with pseudocyst formation, the surgical procedure that was done to drain the cyst and the relapsing nature of acute pancreatitis bordering a chronic presentation thereafter. Basically, my pancreas is smaller, atrophied and not producing the enzymes I need to digest many nutritive compounds.

Nutiva Refined Coconut Oil, 54 Ounce

Wholesome Sweeteners Organic Blue Agave, 44-Ounce Bottles (Pack of 2)

MCT oil is my way around that barrier related to the more global issue of Ehlers-Danlos rather than the specific systemic results thereof. MCT stands for Medium-chain triglycerides. This is derived from Coconut Oil. I could bore you with the scientifics but instead, I’ll summarize: this form of fat does not require any enzymatic action for the body to utilize.

We use it in my smoothies with a dollop of cold pressed coconut oil to give my body a healthy dose of fat. On occasion, when I want a rich, creamy hot coffee drink with added benefits of healthy fats. My hubs will add 1 capful of MCT Oil, one tablespoon of organic coconut oil and 3 tablespoons of organic agave to my coffee in the blender to give a frothy frappe feel. I love it on days when I am cold and stiff! It wakes me up, helps my pain and best of all, I get the benefits of healthy fat content my body doesn’t need to work hard to utilize.

This bottle lasts months with multiple daily uses. Of all I’ve just described, only of a cap full of MCT oil is used. PSA: Don’t use more than that or you’ll be sorry because it will taste VERY bad.

In the proper amount, it is non-detectable!

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# 5 Vegan Omegas 3-6-9

Udo’s Choice – Udo’s Oil 3-6-9 Blend Capsules – 180 count from Flora

Since my intake is poor, I’m not getting enough Omegas in my diet needed to promote overall wellness and healthy function despite my illnesses. Omegas are fatty acids, essential to life and the body to maintain homeostasis. Without Omegas, things like joint stiffness and pain, depression and metabolic problems can present or worsen.

In my case, I have an allergy to Codfish and hypersensitivities to gluten, soy, dairy, eggs, and a bunch of other random foods/spices. My body doesn’t do well digesting the consistency of meat, yet another reason for my primarily vegan diet. Finding an Omega Supplement that was gluten and soy free, let alone vegan was a lengthy task with all that is available online. Luckily, I found Flora’s Udo’s 3-6-9 Blend available on Amazon!

I take two capsules three times a day to make up for what I am not getting in my diet. It’s derived from plant sources such as pumpkin, flax and hemp seeds which are known superfoods with powerful anti-inflammatory capabilities. The only problem I’ve had with this supplement is nausea when I forgo the recommendation to take it without food. No issues whatsoever otherwise.

There are days when I cannot always take my supplements and vitamins because of my conditions. Foods will not go down and all I can do is rest my system until it reboots. Why am I telling you this? I think it is important to know in the comparison contrast of the efficacy of this supplement. There is a significant decrease in my pain levels, joint swelling/stiffness and hair fall when I am able to take this supplement as I listed.

The gel capsules are rather large but go down easy enough. When my difficulties swallowing are acting up I use a thicker fluid to get these down as they are quite large. I love the brown glass jar this comes in as it is great for repurposing kitty treats or other perishable snacks I keep close to my bedside for when the mood strikes.

[ Image Description: Photograph of a calico kitten named lilly]

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# 6 Vitamin C Supplements

One of the first recommendations made by my geneticist was Vitamin C Supplementation.

NOW Foods Vitamin C-1000 Sustained Release with Rose Hips, 250 Tablets from Now Foods

Vitamin C plays an import role in skin integrity, immune response, and detoxification. I found Now C-1000 Extended Release Vitamin with Rose Hips. This formula is free of gluten, soy, and dairy. I take it once daily per the recommendation of my Geneticist. Again, there are days  when taking any of my supplements is not possible. Those days I miss this supplement my skin gets saggy, more extensible and sometimes my gums bleed.

While this is the first time I’ve supplemented vitamin c daily, over the years I learned to use mega doses of vitamin C when I could feel an infections coming on. Anytime my lymph nodes swelled up and I experienced that feverish headache I knew taking 1000 mg of vitamin c would help put a a stop to whatever the processes were going on out.

Many people with chronic diseases report a history of infections. Common ones discussed in chronic illness communities are mononucleosis, Lyme, Strep and Conditions Cytomegalovirus (CMV) infection. My immune testing shows latent infections of all these except Lyme, which is at borderline level. During a particularly nasty case of multifocal pneumonia, my fever spiked to 106. That was almost ten years ago but since I rarely get high fevers. Instead there are days when I run a low-grade fever and feel achy with swelling in my lymph nodes. Taking this supplement keeps those occurrences down to a minimum.

This supplement is on the larger side but since it is only taken once a day I usually tolerate without too much of an issue. Many of my larger supplements are taken with my smoothies to make it easier to avoid my issues with difficulty swallowing. Amazon offers this ginormous bottle for a great price with positive reviews. If you’re like me and can’t eat all the vitamin c rich foods you so desire and require for optimal function in light of EDS dysfunction than this supplement will do  quite nicely!

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# 7 Amino Acid Supplementation

As a member of the Chronic Illness Bloggers, I accepted a campaign for a chronic pain, fatigue, and insomnia amino acid supplement protocol recently made available without a prescription and  approved by the FDA to treat said conditions. I am giving the protocol a full 3-month trial before providing readers an in-depth review but after only 1-2 months of using the protocol I’m already seeing an improvement in many of my symptoms.

As I mentioned, in February 2016 I underwent an Amino Acid analysis revealing deficiencies in all essential and non-essential amino acids. These crucial proteins are needed for normal body functions such as elimination, sensation, and neuroregulatory mechanisms (such as autonomic nervous system functions). With my poor intake, malabsorption issues and diagnosis of EDS it is no wonder I am deficient. This protocol supplements these important proteins and improves cellular function. I am really excited for the next 2 months of therapy with this protocol! Please look forward to my full review of Targeted Medical Pharma’s chronic pain, fatigue, and insomnia protocol in mid-November! 

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A Final Word on Nutrition Supplementation from the Leftover Nurse in Me

Getting my nutrition in the simplest forms seems to be the answer keeping me from tube feeding or parenteral feedings this last year. While I still struggle with my weight on a daily basis these last few months of hitting it hard with the above recommendations seems to be making a great difference between now and when I was on IV nutrition just a few short months ago. Invariably, the tube or the IV is still looming in the distance but I feel confident with these steps I’ve taken to put off that fate as long as possible.

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Before starting any of dietary recommendations please consult your physician(s).

As humans we all have individual, genetic make-ups that respond in different ways to different therapies. What works for me might not work for you and this blog takes no responsibility for recommendations taken without consulting a physician first. That said, I cannot recommend studying the effects of chronic illness on nutrition enough. There is a plethora of scientific information available online regarding the topic and the necessity. Making informed choices about your plan of care under the guidance of a sympathetic practitioner will improve treatments outcomes notably.

Thanks for checking out this post about maintaining weight and adequate nutrition with chronic illness processes affecting intake and absorption! I hope this article is helpful to those struggling for relief from the myriad of symptoms nutritional deficiencies cause and/or aggravate.  After a decade of struggling to maintain my weight, this plan is really giving me some relief after many months of more severe symptoms. While it may be inevitable, at this time this plan is fending off the alternative of a tube or IV nutrition with high stakes consequences like infection and failure. Finding a plan that works for your individual body is no easy task but finding one that works can make  a big difference in the quality of Chronic Illness Life with Ehlers-Danlos Syndrome!

Ehlers-Danlos Syndrome: Chronically Struggling to Maintain Weight- 7 Ways to Supplement Nutrition

Each Ehlers-Danlos