Hypermobility and Ehlers-Danlos Syndrome: What I Wish Everyone Understood

Hypermobility and Ehlers-Danlos Syndrome: What I Wish Everyone Understood

What is Hypermobility?

Hypermobility refers to unstable joints that bend farther than they should.  Many hypermobile people do not realize that what they do is out of the range of normal motion or that it could harm them, until they start having pain. And then often when hypermobile people finally DO have pain, it gets misdiagnosed as something else because what hypermobility is and what it can cause is so poorly understood. 

Not only did I spend most of my life not realizing that my chronic pain was caused by my hypermobility, I was so convinced by others in my life that my pain was “normal” that it took me a long time to even admit that I was different.

When someone first told me I was hypermobile and should look into EDS, I told them that I didn’t have chronic pain. Except for the part where I had some amount of pain every single day, and people without chronic conditions go days or even weeks of their lives without feeling pain unless they are injured.  I didn’t feel that I had any physical abnormalities or “loose” joints even though I injured my rotator cuff parallel parking my car at age 18, and had fully dislocated my hip around the same age doing kicks in a martial arts class. I thought I couldn’t be hypermobile because I couldn’t do splits, but I had all kinds of party tricks I could do with my bendy hands and fingers, and historically *used to* be able to do a number of flexibility tricks that I stopped being able to do because of what turned out to be osteoarthritis.

Everything I described in the previous paragraph is a symptom of my hypermobility, and is not typical.  I wish I had understood that a long time before now. It would have saved me a lot of pain and rehabilitation time.

Here’s what I wish patients, practitioners, family, and friends understood about hypermobility. 

Things I Wish Everyone Knew About Hypermobility

  • Hypermobility is NOT rare. 
  • It’s not just human pretzels –  Hypermobility is not the same as being flexible.
  • Hypermobility can affect more than your joints.
  • Hypermobility is linked with mast cell activation disorders.
  • Hypermobility pain is treatable. 
  • Even if you “only” have hypermobility and not Ehlers Danlos syndrome, you still need medical care for your symptoms.

Hypermobility is NOT rare. 

At least 3% of people have Joint Hypermobility Syndrome. That’s about 9 million people in the United States.  This is a conservative figure: other statistics place it closer to 20% of people.

It’s Not Just Human Pretzels: Hypermobility is Not the Same as Being Flexible

Many people confuse being hypermobile with being “flexible”, and think if they aren’t contortionists or can’t do splits that they can’t possibly be hypermobile. This isn’t true. 

Flexibility refers to your muscles being able to lengthen. Hypermobility refers to your ligaments lengthening.  This lengthening may not cause inflammation and pain in the tendons and ligaments when someone is young –  but it may begin to happen with age. Regardless of whether the ligaments or tendons become painful or damaged, their laxity creates a situation where your joints just don’t stay fully in the socket and slide around in the joint space and damage the cartilage, and this can cause bursitis and/or osteoarthritis.  Again, it is common for joints to “feel fine” when younger and become damaged with age. 

Depending on the person and the type and degree of hypermobility,  these hyperextensions causing pain “with age” can mean age 10, age 20, age 30, or even age 50+. 

Hypermobility Can Cause the OPPOSITE of Flexibility

Because your ligaments are not holding your joints together, your muscles may overcompensate. This will actually lead to stiffness and lack of flexibility. When you are hypermobile, trying to stretch a stiff, spasmed muscle can pull or irritate ligaments or tendons, either subluxing a joint or causing tendinitis.

Note: This doesn’t mean don’t stretch, and it doesn’t mean don’t exercise. It just means that the typical methods don’t apply. 

 
“Double-jointed” Isn’t Actually a Thing

Many people who are hypermobile say they are “double-jointed,” which is seen as a benign condition. There is no such thing as being “double-jointed.” There are no special joints that are different, doubled, or in some other way “designed” to bend too far. There are just joints whose ligaments stretch rather than holding the joint in place, until they do eventually sustain damage from the instability – which causes pain.

Many health resources say that hypermobility is not a problem unless it causes pain. I disagree – I say it’s only a matter of time until it DOES cause pain. 

Hypermobility Can Seem Subtle (if you don’t know what you’re looking for.)

I’ve already told you that hypermobility doesn’t necessarily mean you’re a contortionist or that you can do splits.

The “Beighton Score” is meant to determine joint hypermobility, and certainly if you can do any one of those tricks, you have at least one hypermobile joint and should probably STOP doing that trick to avoid future joint damage. 

But more pragmatically, these are the things I notice in hypermobile people that leads me to suggest that they have their beighton score evaluated, and also include any things they could historically do but can’t any more: 

  • If you can scratch/wash every part of your back. (This is not considered within the typical range of motion.)
  • If you can zip up your own back-zip shirt or dress all the way up, even when the back goes up high. (See above.)
  • If you sometimes feel like one or more of your joints is just “a little bit” out of place, but have dismissed that as not possible. (Actually that could be literally what is happening. This is called a subluxation.)
  • If you have sustained a sports injury (rotator cuff tear, tendinitis found primarily in athletes, full joint dislocation) from doing a normal, daily, non-sporting task. (If your ligaments are lax, or the joint is unstable, “normal” activities may strain your body as if you were engaging in athletics.)
  • If you have one or more “party tricks” you can do like putting your feet up over your head or bending your fingers backwards or at crazy angles. (There is no such thing as double-jointed, remember? You are hyperextending or subluxating something.) 
  • If you USED TO be able to do those “party tricks” but you can’t anymore because it hurts now. (The joints are now damaged due to the hyperextension/subluxation.)
  • If your hands, elbows, knees, or shoulders just always look “weird” in pictures like they’re at the wrong angle and you don’t know why.  (Probably they look weird because you’re hyperextending.)
  • If you can balance your smartphone on one finger and use your thumb to reach EVERY part of the screen without moving your hand at all. (No, this actually isn’t a normal range of motion unless your phone is very small or your hand is VERY large.)
  • If when you lock your knees and look at them in the mirror, your kneecaps flatten out and you see “dimples” over them. (That “dimple” indicates hyperextension.)
  • If you are an adult and can “W” sit, or you could into younger adulthood but stopped being able to as an older adult. (This indicates an abnormal range of motion in your hips and/or knees and is something only children “should be ” able to do.) 
  • If you have super soft skin and/or look young for your age. (Hypermobile collagen often doesn’t wrinkle as easily.)
Infographic describing practical reasons to suspect hypermobility. Text in image description.
You Might Be Hypermobile If

 

It’s Not Just Your Joints

If you have HSD and not EDS (more on that below), it’s *mostly* about your joints, but there are other effects to hypermobility such as:

  • Small fiber neuropathy
  • Disturbed/atypical proprioception, often classified as “clumsiness”
  • Flat feet (because the connective tissue holding your arch shape is soft)
  • Skeletal changes due to soft connective tissue: kyphosis, scoliosis, lordosis, or misaligned bones in the feet and arms. 
  • Digestive issues/IBS
  • Dysautonomia/orthostatic tachycardia
  • Pelvic and bladder dysfunction 
  • Obstructive sleep apnea
  • Poor blood circulation and pooling of blood in the extremities, often leading to dizziness and fatigue
  • Weak, fragile,  or “stretchy” veins which burst easily and/or are hard to draw from

Hypermobility with or without the above is known as Hypermobility Spectrum Disorder.  Hypermobility with “other stuff”  affecting the internal organs and veins (see below) is probably Ehlers Danlos Syndrome, unless there is some other medical explanation for the symptoms.

Hypermobility is Linked with Mast Cell Activation Disorders.

Hypermobility and MCAD’s are linked not just epidemiologically, but the connection is thought to be causal. More about this connection form Anne Maitland in this youtube video. I have a blog post with more info about mast cell disorders in general.

In my case, my MCAD/MCAS reactivity is *so* tightly coupled with my hypermobility that I will actually have joint subluxations and pain as a direct result of a mast cell trigger exposure. Once I realized (from an older Maitland talk) that these could be connected, I began to notice that I would have a really good week, then get a face full of perfume or fabric softener, and within five minutes experience a hip subluxation for which I required crutches or a wheelchair.

Once I got on a daily med, ketotifen, that helped me with reducing the severity of my airborne reactions, I attended a sci fi & fantasy convention that I would normally have needed a mask to attend. I was amazed to realize that I could totally handle *most* of the con without a mask, so I didn’t wear one. By day two of the convention, I was having so much trouble with my knees and hips that I needed crutches. By day three, my wrists were so bad from the crutches that I needed a wheelchair. I didn’t put together that I was having delayed/systemic reactions to the cleaners and scents from the hotel and convention guests until someone else suggested that. I tried upping my rescue meds and almost *instantly* had a reduction in pain.

So while I employ a BUNCH of methods for treating my EDS pain, detailed below, my personal first line of treatment is actually to treat my mast cell reactivity!

Hypermobility Pain is Treatable

There is no cure for hypermobility, but many people can actually get a LOT of function back and reduce their pain quite a bit with the RIGHT kind of treatment.

Treatment centers around both adjusting your ways of doing things to avoid injury and strengthening your muscles to increase joint stability and reduce daily damage and wear. This sounds basic and like it can’t possibly help much, but I can personally attest that I went from *extremely* low function and high pain to going weeks at a time without any basic daily life activities being impacted by my pain or dislocations.  And the PT that I did to get from hardly being able to take care of myself at home to actually getting out and doing life felt like things that could not POSSIBLY be helpful. It was just so slow and gradual, which it has to be for EDS.
It is absolutely CRUCIAL though that any physical or occupational therapy be done right and guided by knowledgeable practitioners, because it is so easy to injure a hypermobile person with the wrong kind of exercise, the wrong order of strengthening,  or going too fast and adding too much resistance before muscles are ready, forcing the tendons and ligaments to take up the slack.

Finding the right providers can be very difficult, unfortunately. More and more people are learning about it, but there are still far more people that don’t understand hypermobility than do.  Your best bet is to reach out to local patient communities to find out who is helping other people with hypermobility and/or EDS.

Another option is to do some self-study and ask a PT who’s less familiar but willing to listen to work with you to learn how to help and treat you without harming you.  For self study resources, see below.

Hand Therapy Exists 

This is about treatment but it gets its own headline because I really, really wish I had known this before I did.  Hand therapists are often occupational therapists, and sometimes physical therapists, who specialize in treating and rehabilitating your hands.

Since your hands have very little muscle mass compared to the rest of your body, and since you use them for nearly all daily tasks, hands can be the part of the body that start malfunctioning first on a hypermobile person, and are among the most disruptive to basic tasks when they do.

Much like many other aspects of hypermobility pain, many people with hand pain do NOT realize that hypermobility is the cause of their pain. I sure didn’t. If I had gone to a hand therapist, they probably would have realized that was the case sooner than I did. Not sure though, given that physical therapists that don’t specialize in hands and aren’t familiar with hypermobility don’t always realize that’s the issue or how to treat it. BUT once I did know it was hypermobility, I wasted a lot of time self-treating and paying cash for items like splints that a hand therapist could have helped me with *and* gotten covered by insurance.

So, this is me letting you know that hand therapy is a discipline at all. Finding a hand therapist that understands EDS/hypermobility is important, but my personal experience is that more of them know what it is than PT’s I talk to. 

CORN ALLERGY WARNING: Some hand therapists do Fluidotherapy, which involves literal corn husks. If you are airborne reactive to corn, definitely call ahead and find out if one of these machines is in the office.

Ring Splints Can Help So Much

One of the things that can help you with hand pain whether you have a hand therapist or not is splints for your fingers. These come in two varieties, essentially- plastic and metal. To “prove” to myself that splints can help, I went ahead and ordered the plastic “oval 8” splints from Amazon.

I got a LOT of function back instantly and a huge reduction in pain. I hadn’t even realized how much of my daily hand pain was from hyper-extension of my fingers. What was also unexpected was that my “knuckle” joints, aka my MCP joints, were stabilized by putting splints on my “middle” joints, also known as the PIP joints.  So I didn’t just reduce pain in the joints I splinted – I reduced pain in my whole hand.
Bones-and-joints-of-the-human-hand-DIP-Distal-Interphalangeal-joint-PIPProximal

I got pretty “done” with my Oval 8’s pretty fast though because they don’t come in half-sizes, and my fingers definitely change size during the day, and they would start flying off my hands when swelling went down.  Other people still prefer them to metal ring splints, though, and I’m told that some hand therapists can customize their sizing. Here’s an arthritis blog post comparing the two types.

Here’s what my hands look like wearing my silver ring splints along with my regular jewelry, plus a couple generic advertisement pictures for silver ring splints. The main reason I wear them is that they let me do basic tasks without screaming in pain, but they have the side effect of looking awesome.

You can purchase silver ring splints via orders from a hand therapist from SIRIS, at silverringsplint.com. Your hand therapist may go ahead and order and pay for them for you and bill you back for what isn’t covered, or they may ask you to pay ahead and submit later. Different CPT codes for the splints work better with different companies for better coverage, as each of these have a different max allowable amount, so if you get poor coverage or a denial you can always try resubmitting with a different code.

In either case, if you do run into issues with coverage, and appeals or resubmitting with a different code doesn’t work, it is totally possible to return ring splints to SIRIS as long as they are not damaged/are in sellable condition. I had a shockingly easy time getting mine covered, though. Your mileage may vary. 

You can also purchase your own ring splints for cash from companies like Zebra Splints. If you decide to do this, I would consider the following:

  • The way my hand therapist fitted my SIRIS splints was NOT the way I would have chosen to fit mine on my own, and she was absolutely more correct. So there is some value to having help with choosing and fitting your splints. 
  • Not all ring splints are created equal. Zebra Splints are quality, but the open-loop adjustable design of them may or may not work for your specific issues or habits. As for the other sellers, I’ve seen all kinds of poor practices and quality, from an inability to choose different sizing on each side of the joint on a non-adjustable splint, to just poor metal quality that people complain about getting rashes from.

Even if You “Only” Have Hypermobility Spectrum Disorder, You Still Need Medical Care for Your Symptoms

I’ve spent this entire post thus far explaining that hypermobility is NOT benign. If you have pain from your hypermobility, it needs treatment. If you don’t yet have pain from your hypermobility, that doesn’t mean you won’t. It is my opinion that you probably will eventually have pain from your hypermobility even if you don’t currently.

Many people with HSD, myself included, have some of the systemic effects of EDS even if they do not have enough of them currently to constitute a diagnosis. ALL of these effects are still medical problems that require treatment, and people with HSD need to be aware that they *could* develop more of these symptoms if they have one of them.

What Is Ehlers-Danlos Syndrome (EDS)? 

 Ehlers-Danlos Syndrome (EDS) refers to a group of heritable connective tissue disorders that cause abnormal connective tissue/collagen production. These disorders cause:

  • All of the musculoskeletal, systemic, and chronic pain effects of HSD.

They also can (but may not always) cause the following: 

  • Soft/velvety skin which may or may not be fragile and hyper-extensible (stretchy)
  • Organ prolapse/hernia
  • Mitral valve prolapse/heart murmur
  • problems with the meninge such as CSF leak
  • Easy and often unexplained bruising
  • Scarring and stretch marks out of proportion to the actual cause of the mark/scar
  • Marfanoid Habitus

Some people with EDS have super stretchy skin, but not all. Many have a  “forever young” look because their wacky collagen doesn’t sag and wrinkle as easily. Some start sagging weirdly at a very young age due to the collagen being weak. Some stay super young looking and then suddenly age “overnight.” 

Depending on the type of EDS, the organ, vein, and central nervous system stuff may be better, worse, or mostly absent. 

There are several subtypes of EDS that have a genetic mutation identified and you can test for these. All of these are of course rare. There is one, much more common, type of EDS called Hypermobile Type. Hypermobile Type has no known associated genetic subtype and can only be diagnosed via clinical observation.

Getting Diagnosed with Hypermobility Spectrum Disorder or Ehlers-Danlos Syndrome


The diagnostic criteria are quite clear, but it’s still hard to get doctors to make that diagnosis who aren’t familiar. 

Not only that, but doctors who know just a little about EDS can be actually dangerous for us. I have seen reports in the patient community of doctors roughly pulling on their limbs and dislocating them “checking” for EDS, or from folks with VEDS, rough palpation of the abdomen actually causing organ perforation.  Even if severe injuries like this don’t happen, an unfamiliar doctor may not recognize hypermobile joints even when looking at them, or may not realize they need to include historical hyperextension for adult patients who may have joint damage that limits the signs of hypermobility. 

Your best bet for finding doctors who can diagnose Hypermobility and EDS is your patient community. Find someone else in your area who has been diagnosed, and see who diagnosed them.

Treatment for EDS and hypermobility is actually slightly easier than diagnosing it. Your biggest resource for treatment is going to be the patient community and your own learning. Find out who in your area is helping folks with similar issues, and self-educate so that you understand what kind of care you need. 

Resources for Learning about and Managing EDS

The following resources are invaluable for understanding your own conditions, and can also be used to help educate any providers you have that are willing to listen and learn alongside you. 

All of these books cover both hypermobility and EDS both. Even if you do have expert practitioners, I would still recommend reading one or more of these books for self-education. 

Clearing Up Some Misconceptions About Corn Allergy

When you google “corn allergy”, the top links you get back seem to convey a picture of corn avoidance that is far less complicated than what I experience, and what the folks in my support groups and who contact me directly through my blog experience. Now, I’m not trying to bum anybody out here, but I am trying to keep everybody safe. Which does seem to bum people out a lot. But hey, I like being alive so I’m not bummed at all to know things that keep me that way.

Here are some of the things I see a lot of the most popular google hits on corn allergy get wrong. I’ve included references where I can, but in a lot of cases research on these kinds of things just haven’t been funded. So for some items all I really have is my own experiences, my own critical thinking, and reports from the patient community to go on. I would much prefer solid statistics and rigorous studies. If you would like to explore some of these topics in that manner, let me know and I will help you find volunteers to participate.

In the meantime, this is what I know, based on as much peer-reviewed research as I can find, the reports of 8,000 members in a support group, and many dozens of direct messages between myself and members of the corn allergy community:

Misconceptions about Corn Allergies
  1. Corn allergy reactions are only to the protein.
  2. If you have to avoid derivatives and traces of corn, you can do so by reading labels.
  3. If you have to avoid derivatives and traces of corn, you can do so by calling or emailing manufacturers and asking them if their product “contains corn”.
  4. Airborne reactivity to corn is impossible or at least incredibly rare.
  5. Coping with a corn allergy only involves avoiding foods that contain corn.
  6. The symptoms of a food allergy are limited to hives, hay-fever type symptoms, severe facial swelling, or throat closing.
  7. Food intolerances cannot cause serious reactions.

Incorrect: Corn allergy reactions are only to the protein. Starches, sugars, alcohols or other items synthesized using corn products as a starting material cannot cause an allergic reaction.

Actually:

Allergens can be more than just proteins.

Continue reading “Clearing Up Some Misconceptions About Corn Allergy”

Mast Cell Activation Syndrome

This blog is about corn allergy, but it’s no secret by now that I don’t “just” have a corn allergy. I also have a mast cell disorder, and that is likely the reason my corn reactions are so severe and sensitive. It is also the reason why I react to so many other things besides corn. More and more people with corn allergies are looking into mast cell disorders for themselves, so I figure it’s high time for me to discuss them here.

What Are Mast Cell Disorders?

Mast Cell Activation Disorders (MCAD) are abnormalities of your mast cells. Mast cells are a very important part of your immune system and are involved in your body’s defense against pathogens. They protect your body from invaders by releasing inflammatory factors including histamine, such as in an allergic reaction. When you have too many mast cells, or they are malformed or dysfunctional, you can have allergic reactivity without the same immunological pathways involved in allergies. There are two types of mast cell activation disorders: Mastocytosis, and Mast Cell Activation Syndrome (MCAS).

Continue reading “Mast Cell Activation Syndrome”

Hemolytic Anemia & G6PD Deficiency: How I survived intravenous corn derivatives.

If you’ve ever read my posts on ER Safety, Hospital Safety, or the Hidden Corn- Medical Supplies post, you probably know that blood transfusions contain corn derivatives. I’ve known this a while and made plans for eventually having to have an emergency treatment that would require corn exposure in order to save my life. But I had always hoped it just wouldn’t happen to me. But of course it did, last July.

Continue reading “Hemolytic Anemia & G6PD Deficiency: How I survived intravenous corn derivatives.”

I’ll go vegetarian if you go corn free.

Over a year ago, someone commented on my post detailing the challenges of finding corn-free meat by asking why one would not become a vegetarian instead of going to all that trouble.

My diet, and the diet of many people with corn allergy, is so limited that that would be a guarantee of malnutrition. I already fight malnutrition constantly. Adding an extra limitation beyond what I am already dealing with sounds downright dangerous.

This comment was written on a blog that is literally about how challenging a corn free diet is, on an article that goes into depth on just one single aspect of how challenging it is. Either I’m not conveying the magnitude of the problem well, or the person writing didn’t bother to try to understand the problem before offering a solution.

So here’s one more attempt to explain it.

Why is a corn-free diet so limited?

I do have a lot of challenges besides corn. But let’s pretend for a minute that my only issue was a severe, anaphylactic, airborne, and highly sensitive corn allergy. With only that:

    • I would be unable to eat almost any food from the grocery store, even whole organic produce, because of the possibility of corny packaging, organic sprays containing corn derivatives,  waxes, and cross contamination. People with a more moderate sensitivity to corn will still have many challenges finding foods in the grocery store that they can eat safely. In fact, those that can eat some foods but not others from the regular store have more to keep track of than those for whom this just is not an option.

 

    • This includes being unable to use pre-ground flours or any grains, beans, nuts or seeds that have been shelled, husked, or cleaned using machinery. Because of growing practices, threshing equipment, and packaging, dry beans are incredibly hard for those with corn allergies, even moderate ones, to find. I don’t think anyone has found a brand that works for many super-sensitive people since the Straw Hat beans changed the threshing equipment they were using. Some of us are using local farms who either sell us the dried beans in pod, or get fresh beans and dry ourselves.

 

    • I would be unable to tolerate almost most–or possibly any–vegetable oils. Most super sensitive people can tolerate Jovial olive oil, but some people even react to that and have no safe vegetable-based oil. Those people use the fat rendered from their safe meat, and this is one of the reasons why meat is such an important staple to us. Otherwise all our food is broiled, baked, and braised dry. Those that tolerate several vegetable oils still have dozens they can’t use due to contamination.

 

    • Because of this, I would need to carefully cultivate a network of farms, local and mail-order, who grew completely no-spray produce. If the farm is mail-order I need to negotiate safe handling and packaging in transit. Even the less sensitive need to exercise care in where their produce comes from and what is done to it. For example, citric acid washes and gas ripening cause problems for many.

 

    • Since very few (or zero, if you’re in a cold climate) crops grow year-round, I would need to preserve what food I can eat while it is available so that I can eat it the rest of the year. This is something many people with a corn allergy need to do to some degree, not just the super-sensitive.

 

 

    • This preservation would take about 4-8 hours a week of my time throughout the year, depending on the season. This is one area where sensitivity will determine how much stockpiling you need to do, but then again your average person doesn’t need to do this at all.

 

    • In addition to the actual preservation work, I would need to spend at least 8 hours a week year-round researching new sources of food, creating backup sources of food I already have and trying to track my nutritional intake to prevent against malnutrition, and keeping up with product changes and what things the corn allergy community are reacting to or doing well with. When one is new to the allergy or has had a sensitivity uptick, the time spent is often much, much more. Many people spend years feeling like all they do is research how to eat food safely. This is true across all levels of sensitivity.

 

  • Oh and also work a full time job, either inside or outside the home. I am counting stay-at-home-parenthood and caring for oneself as a disabled person full time jobs.

That’s a lot already. And many of us are dealing with other intersecting health issues that limit our dietary choices or ability to prepare or afford certain foods.

Continue reading “I’ll go vegetarian if you go corn free.”

The Water Post

Help! I’m Reacting to Water???!

This is a message I’ve gotten a few times, and I haven’t had a very complete response to it to date because I haven’t been able to solve the problem for myself. And now that I have it mostly solved, I still don’t have any clear explanation for the phenomenon or any guaranteed solutions for anyone. Just some suggestions.  But here is literally everything I know about and have tried re: finding safe water to drink when you have corn allergy, chemical sensitivity, or a mast cell disorder.

I am making many claims below that need elaboration or references. I will come back and add details and links as I have time, but I thought it was important to just do a brain dump ASAP because there are people who need this info that currently don’t have safe water.

tl;dr – The Short Version

If you are allergic to corn and are reacting to your water,  DO NOT DRINK Dasani or Aquafina. These are KNOWN to contain corn derivatives in the form of “added minerals” and/or the bottles are made from corn plastic.

Try  buying Crystal Geyser Alpine Spring brand  (owned by CG Roxane) bottled water before you try anything else. It is cheap and easily attainable in many areas at drugstores, grocery stores, dollar stores, liquidation stores, etc.  There are several spring sources and not all of them work for everyone, and also there are still people who cannot tolerate this water.  If that doesn’t work, begin trialing: Fiji, Starbucks Ethos brand, Voss in glass bottles, Poland Springs. Also join the Facebook Corn Allergy and Intolerance group, because you are going to need some real-time group support getting this figured out.

Where’s the Corn  (or other allergens) in Water?

Quite honestly, I do not know why precisely water is such a problem for corn allergy folks.  It definitely is but I really can’t provide a lot of clear physiological explanation for why that would be. It is true that some corn derivatives may be used in water treatment, and that mineral fortification treatments may have corn-based excipients in them. However the degree to which we see water issues really outpaces what could be explained by that,  in my observation.
I think it is likely an issue with multiple sensitivities and the intersection of mast cell activation disorders that causes the issue. And the result of that is that there is no universally tolerated water, and there are several folks  within my online social circles at any given point in time who are not completely tolerating *any* water.
Here are the things that I have observed can be problems for myself and others with corn allergy and/or mast cell activation disorders:

Bottles: Glass Sanitizers

Antimicrobials seem to be a huge trigger for corn allergy folks as well as MCAD folks. No-rinse bottle sanitizer products can contain corn derivatives and even corn starch when they are the drop-in tablet form.

Bottles: Glass Mold Release/Coatings

Continue reading “The Water Post”

Ehlers-Danlos Syndrome Awareness Month: My Life as a Zebra

May is Ehlers-Danlos Syndrome Awareness month, and this is one of the rare diseases I am diagnosed with. So I’m taking a moment to depart from the topic of corn allergy to give you some info about it.

eds awareness

Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders. EDS causes weak or defective collagen, which can affect many systems within the body- basically anywhere you have connective tissue. There are many types of EDS, and all of them involve joint hypermobility (double-jointedness), fragile tissue, and fragile/easily-bruised skin. Some types of EDS such as Vascular Type can cause arterial or organ rupture because the connective tissue of the organs and veins are weak.

There are 15 types of EDS, which you can learn about in detail from the Ehlers-Danlos Society.

The type I have is Hypermobile Type, which is the most common type. As of 2017, there is also a related condition, Hypermobility Spectrum Disorder, which is even more common than hypermobile type EDS.

Two things I would like to point out about hypermobility:

1) It is possible to be hypermobile without being flexible. 
Hypermobility has to do with how well your ligaments hold your bones together, while flexibility depends on the ability of your muscles to stretch. In many people, especially older hypermobile people, you may lose flexibility due to joint damage or muscle tension as the muscles try to hold the loose joints together.  Here’s a writeup from Yoga Dork that I think explains the difference well.

2) It is also possible to be hypermobile without having adverse symptoms from it. 
I often feel like this just means you don’t have adverse effects “yet” but I can allow for other viewpoints.

Continue reading “Ehlers-Danlos Syndrome Awareness Month: My Life as a Zebra”

Hospital and Medical Safety With a Corn Allergy

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Updated 2/21/2017

I’ve written a bit about how to stay safe in emergency situations, but not about longer hospital stays and planned surgeries. There’s no possible way for me to cover every possibility, so the best way to stay safe in a medical context is to familiarize yourself with where corn hides in medical supplies, in food, and in medications, and familiarize yourself with the list of ingredients commonly derived from corn and if possible train a family member or loved one on these things so that they can help advocate for you.

Here are just a few suggestions for staying safe in a hospital setting. This document is very much work-in-progress, but I feel it’s important to share as much as I can think of  as soon as I have time to rather than continue waiting until I have time to be complete.

Create an Advance Healthcare Directive

If you are an adult, and you are conscious and of sound mind, you legally should always (to my knowledge) have control of your medical care (or the medical care of your dependent child). However if you are unconscious, or are deemed not to be of sound mind, someone else can (and will) make decisions regarding your care for you (or your dependent). Claiming to have adverse reactions to such commonplace ingredients such as citric acid and dextrose, or displaying fear of just about any and every medication, can seem like paranoia to physicians. It unfortunately HAS happened that those with corn allergies have been treated with psych medication instead of antihistamines, or been given medication that they had severe reactions to while they were unconscious or unable to advocate for themselves.

There is no way to guarantee that this won’t happen, but creating an advance healthcare directive, or living will, can help. Here’s more info on how to do that. What you put in that advance directive will be individual. Please do this as soon as you are able and well ahead of any planned procedures, and work with your team of medical professionals as well as your trusted corn allergy resources on the correct content.

Wear A Mask

If you are airborne reactive this is a must. If you are not usually airborne reactive, have a mask anyway, because it is likely you will be so bombarded with allergens in the hospital that you may become airborne reactive where you usually aren’t. You can find out what masks I use on my product list page.

Negotiate Safe Meds

Get the NDC # for any medication they want to use. This is found on the package insert. The paper package insert has the inactive ingredients somewhere on it, but it is hard to find in all that tiny print. Rather than scouring the inserts, look the NDC # up on DailyMed and skip to the last section, “Ingredients and Appearance.” There should be a section on inactive ingredients which you can cross reference with the corn derivatives list. 

I’ve also made a google doc spreadsheet available containing some of my findings on medications. This list was using for open heart surgery for someone, so it isn’t exhaustive of every possible med you would ever want to use. It also was done basically in one night on an emergency basis, so it is really just my off-the-cuff response after eyeballing the ingredients list. However it is a better starting place than nowhere.

When negotiating safe medications, consider not discussing corn. Explain that you have a history of allergic reactions to “excipients and preservatives” in medications, and that you really need your meds to be preservative free for your safety.

This includes premade saline flushes for iv lines. I found that out the hard way when I was recently admitted to the hospital.

When You Can’t Negotiate 100% Safe Meds, Pre-Medicate

I recently had to have blood transfusions, and not only is there  corn in blood bags, but reactions to blood transfusions are common even in those without allergy problems. This was scary, but I didn’t have a choice. I needed blood. The hospital admitted me even though transfusions are typically an outpatient procedure, and we agreed on a premedication protocol before proceeding with any transfusions.

If you need to do transfusions or any other procedure that may cause you to react, or if you need to take a medication for which you cannot find a corn free form, you just have to take medication to help prevent severe reactions, and remain under observation so that any reactions can be treated.

You will want to consult with your doctor on the right premedication protocol for you. I use a version of what The Mastocytosis Society recommends. I do have MCAS, however those who have “just” allergies and not mast cell disease can follow mast cell protocols with quite a bit of success.  That protocol is:

  • Corticosteroids, either intravenous 2 hours beforehand (if  this needs to be done right away), or orally starting 2 days beforehand (if you have time to plan).
    • If you receive an injection of steroids before a procedure, you need a taper of steroids to begin after the injection wears off to account for biphasic reaction or further irritation from the medication or procedure.
    • The length of the taper will depend on the procedure and your particular reactivity. Consult with your doctor.
    • For me personally, my preferred steroid injection is solu-medrol (methylpredisolone sodium succinate powder for injection- mixed in water only, no ethanol).
  • Intravenous or intramuscular benadryl  25-50 mg 1 hour before and 25-50mg IV, IM, or orally every 4-6 hours after  until chance of reaction is passed. (This may be several days depending on the procedure or medication.)
    • This needs to be intravenous or intramuscular if at all possible because it is much more effective than oral.
    • Hospira brand is safest for me diphenhydramine hcl for injection is safest for me.
    • If you are concerned about having a reaction to the benadryl or an ingredient in it, wait until the steroids have kicked in, and choose intramuscular over intravenous as it will “mute” the reaction somewhat.
    • You may be able to use another strong H1 antihistamine such as hydroxyzine if you cannot use benadryl. Consult with your doctor.
  • Oral, intravenous, or intramusculer H2 antihistamine (pepcid 40mg or zantac 150mg) 1 hour before and every 4-6 hours after until chance of reaction has passed.
    • This increases the effectiveness of the benadryl (or other h1 antihistamine).
    • This is less of a big deal to do IV or IM, and can be oral. Meaning if you can’t find a safe injectable version, ask the hospital staff to allow you to take your own H2 if you have one.

All meds should of course be prervative free and corn free.

Cook Ahead

If you have a corn allergy, it’s highly unlikely that you will be able to eat any hospital food, even if they swear they can cook you something corn-free. Most people, not even medical staff, just cannot understand what “corn free” is to the degree that we have to avoid it. If you know you are going to have be inpatient, cook yourself enough meals in advance to cover your planned stay and then some, and keep it in the freezer. If you don’t have a lot of freezer space, consider investing in a separate freezer. Even in an apartment it’s likely you can make room for at least a small freezer. You can likely create some vertical storage shelving above it to reclaim some of that space. (I originally said you can store stuff on top of it, and then found a TON of manufacturer advice not to do that because it interferes with venting!)  If money is a concern, you should be able to find used freezers on craigslist, although you’ll possibly need to do some work to decontaminate it since it may have had unsafe food in it. (I realize that *any* money is still money that many of us don’t have, and I totally understand and sympathize- I’m just making my ideal-world recommendations.)

As far as what to cook ahead, that depends on your preferences and safe foods. I honestly haven’t found too many things that I eat that don’t freeze and reheat well, maybe cooked eggs (which I personally am allergic to) and some types of dairy products such as cream and un-melted cheeses may get gross. When cooking for hospital visits, probably go with things that are easy to chew and somewhat bland as if you aren’t feeling well you may not enjoy chewing or spicy items, and even consider freezing or canning (more on corn-free canning here) some plain bone or meat broth in case you’re feeling too ill to tolerate anything else. I try to keep bland soups, baby-food style meat purees, broth, and fruit purees on hand for illness or a possible hospitalization.

You will need to get permission from the hospital to bring your own food. Be polite but firm about this- it’s not optional. You will also need to arrange for a place to keep frozen food and a way to reheat it.

Pack Ahead

Create a “hospital bag” (or in my case a suitcase) that contains everything you need for a hospital stay. The exact contents will depend very much on your sensitivity and needs, but I would err on the side of over-preparing, as you may find that in a hospital context, your reactivity and sensitivity ratchets up quite a bit.

Here is what is in my hospital bag:

  • 3x Twin Sheet Sets (I will react to the laundry detergents used by the hospital so need to bring my own clean bedding)
  • 3x spare twin fitted sheets (You may sweat, bleed, or otherwise soil the sheets in a hospital context, so bring spares!)
  • 2x Vog n99 Carbon Filter mask *with* head strap accessory.
  • 2x Extra mask filters (I use I Can Breathe  removable filters inside my vog mask to “double up” and help protect from airborne reactions better.)
  • 1x 3M Half Facepiece Respirator with  the  3M 60926 Multi Gas Filter Cartridges.
  • 4x hospital gowns (washed in my safe detergent)
  • 4x hospital socks (“hospital socks” refers to the kind with the treads on the bottom so you can’t slip)
  • 2x allergen pillow cover
  • 2x blanket
  • 3x panties (probably I could stand to have more, who knows how long I’ll be in there)
  • 6x cloth menstrual pad
  • 3x cotton lined waterproof mattress pads (mostly for sweat, I hope, but who knows!)
  • Towels, washcloths
  • body soap/dish soap
  • baking soda (For brushing teeth, washing hands, cleaning “whatever” – I use Karlin’s Finest)
  • shea butter (dry skin or lips, NOW brand is safe for me)
  • jojoba oil (dry skin or lips, NOW brand is safe for me)
  • hand soap in pump bottle (this is largely for setting in the room for nurses and visitors to use instead of the corny stuff)
  • phone charger (with a nice long cord so you can use it from bed while still plugged in)
  • coban tape
  • t-shirt sleeve for under pressure cuff (many react to the sanitizers used on the cuffs between patients)
  • Safe plate, bowl, spoon
  • HEPA filter (run in your room constantly and request the door be kept closed)
  • plastic tub to use as a dish washbasin
  • Safe water filter or safe bottled water (many corn allergics react to tap water or certain brands of bottled water such as Dasani)
  • safe sippy cup  with straw (if you’re sick you’ll spill- heck, I spill when not sick. I use a mason jar with a silicone koozie, a plastic sippy lid, and silicone straws)
  • 3 days worth of all daily & rescue medications.  (The hospital will not want to allow you to take your own medications but if you use the instructions above to check for corn in the medications they want to administer, and cannot identify a corn-free option, they may allow you to take your own if you calmly and rationally explain to them that you are likely to react to the excipients and preservatives in the medications they have on hand.) 

Laminated Signs

At shift changes, nurses don’t always carefully read every patients’ chart, and may mix up and forget individual patients’ needs. Hang signs anywhere there is a hazard for you to help reduce the chance of them doing something that will make you react. I have a home laminator and have pre-printed laminated signs in my bag. You can certainly use neatly hand-written signs though. But better to come up with what you need in advance than scramble while sick/injured.

  • No HAND sanitizer sign for front door
  • Keep Door Closed sign for door
  • Mop Floors with Water Only sign (consider getting translated into some commonly spoken local languages in case the cleaning staff do not read english well)
  • small do not use signs for hand soap & sanitizer
  • NO DEXTROSE NO GLUCOSE NO CITRIC ACID NO LACTIC ACID sign for iv pole

More Resources/Links

ER Safety with a Corn Allergy

ER Protocol for Mobile Devices

List of Commonly Corn Derived Ingredients (Corn Allergens List)

Hidden Corn – Medical Supplies

Hidden Corn – Food

Learn something from this post? Feel free to show your appreciation with a tip! The info on my blog is always free, so you are never obligated. But it is always appreciated.
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What My Winter Prep Looks Like

What My Winter Prep Looks Like

I can only eat food from a few specific farmers so I have to put up what is growing when it’s growing if I want to eat in the winter. You can learn about why this is by skimming through my Hidden Corn laundry list  and reading some of my corn-tamination posts on individual foods. Because of other allergies, my “lockdown season” has been from November until June. One of my farmer-mommies began planting some winter crops I could eat so my lockdown is now from about January to June. You can read exactly what I eat on my “What I Can Eat” post.

People frequently want to know what it looks like when you can’t just run out and buy food for half the year, so I took these pictures. What I have put up I will probably eat about 60-70% of this year, to myself. The large volume is mostly because I can’t eat any grains or starches due to not having safe sources. Corn is my anaphylactic and most sensitive allergy but I am also allergic to eggs, soy, and dozens of vegetables including all of the ones that grow in cold weather such as broccoli and cabbage.
PLEASE NOTE that the mason jar lids shown here are NOT safe for canning for most and may not be safe for frozen or dried storage for many. The BPA free canning lids from Ball and Kerr contain a resin that contains some corn. I personally can jar things with them but cannot have stuff that was canned (boiled in hot water for a long time) with them.

All of my preserved food is frozen or dehydrated because in addition to the Ball/Kerr canning lids containing a corny resin, I also do not seem to tolerate the Tattler canning lids. Not sure if this is a corn issue or not. I have not yet tried the Weck jars although I will eventually. More (but not enough) on corn-free canning here.

ANOTHER NOTE for people buying freezers- you want MANUAL DEFROST for any long term storage. “Frost Free” freezers are dehumidifiers which will eventually freeze dry your meat if it is not in a 100% airtight seal. My safe meat packaging is ziplocks, so those are not true hermetic seals at all.  I also observe, although the internet at large contradicts me, that frost free freezers contribute to MUCH faster freezer burn in all of my food.  I have meat in my manual defrost freezer from well over a year ago that is still totally fine, and it wouldn’t last nearly that long in a frost free freezer.

 

 

Clockwise from upper left:

  1. Dry storage & lactoferments: home dried & ground paprika, dried tomatoes, dried sweet & hot peppers, dried tomatoes, celery, more dried tomatoes, spicy pickled cucumbers & ancho peppers on to ferment still.
  2. 20 cubic foot upright freezer #1: Jars upon jars of fruit purees, tomato sauce, foodsaver vacuum-sealed bags of green veggies, pear sauce, a LOT of peaches, frozen grapes, and berries.
  3. 20 cubic foot upright freezer #2: Cucumber juice (yes really), more tomato sauce, fruit purees, more peaches, berries, and some pecans I never got around to shelling because they are a pain in the rear.
  4. 20 cubic foot chest freezer: These really are the best for fitting way more than the same cubic foot in an upright, not accidentally leaving open slightly & losing a bunch of food, and not building up with frost as quickly. However omg keeping them organized. I used the inserts that come with the freezer for the bottom part and then stacked these sterilite bins on top so i can easily remove the bins and see what’s below. best I can do for organizing.
  5. 4.4 Cubic Foot “all fridge” minifridge. This is my backstock mini-fridge. I unplug it when I don’t  need to store more produce than my regular fridge can hold. At the time of this picture it contains cucumbers I need to process still, and pickled veggies that are done fermenting.