gluten-free Archives - The Green Writing Desk

For My 30th Birthday, I Was Going to Get a Neck Tattoo—Instead I Found Out I Have Ehlers-Danlos Syndrome

2020-10-302020-10-30 by Jenn

Thirteen years after my misdiagnosed autoimmune disorder, 18 years after having debilitating painful periods almost every month, and almost nine years after going gluten-free and feeling healthy, here I am with a potential new diagnosis.

In hindsight, it all makes perfect sense. Ehlers-Danlos and mast cell activation syndrome. I have many of the symptoms of each. Yet, no one—outside of my integrative health doctor a few months ago—told me that I had these disorders.

Yet I know that at least one of my doctors knew I had Ehlers-Danlos. She had me perform the maneuvers of the Beighton score during my appointment at the age of 21. At the time, I didn’t know that’s what she was asking me to do; all I knew was that she was surprised by my hypermobility. She never told me I had the disorder.

(I recently attempted to find this doctor—who told me I would be on chemotherapy for the rest of my life to manage my autoimmune disorder, and who I only saw once—to get my records only to find that the practice is closed and I cannot locate her. Very frustrating. She came highly recommended to me from some acquaintances who had lupus—she turned out to be a total joke. She knew I had Ehlers-Danlos, probably knew about the connection between Ehlers-Danlos and mast cell activation syndrome, and probably could have come to the conclusion that my “autoimmune disease” was a result of my body overreacting to foods that it didn’t like.) Anyway!

So how did I get from there to HERE?

You can read the full story here, but the short version is this: I walked out of that doctor’s office feeling hopeless yet determine that this was not going to be my life. I found an herbalist who helped me figure out that gluten was causing all my symptoms. I stopped eating gluten and have been fine for the past nine years without any medication.

And yet.

While I’m currently healthier than I’ve ever been in my whole life, there were still some nagging issues that I couldn’t quite figure out.

The insanely painful periods (which have improved SO MUCH with help from my herbalists, but still sometimes leave me in bed all day)

My unexplained anxiety and skin picking disorder

The bad reaction I’d often have to alcohol (I’ve since quit drinking for good)

Having brain fog after eating

My orthostatic hypotension and low blood pressure

Hives after eating food (never quite figured out which foods caused this)

Insomnia

Poor wound healing, scars, and dry skin

The fact that I feel cold almost all the time

I couldn’t put my finger on it, and often times I’d forget that many of these symptoms weren’t normal because I’d been experiencing them forever. I chalked it up to genetics: my dad has insomnia and dry skin, my mom and brother have some form of skin picking disorder (which is actually a mild form of OCD).

Brain fog and hives are classic symptoms of a food intolerance, but I couldn’t figure out what I was eating that was causing these symptoms. I already don’t eat gluten, dairy, alcohol, and genetically modified food. I also do my best to avoid refined sugars (although, of course, I do indulge once in a while).

So what was going on?

I blamed it on my parents: I got screwed with bad genes, blah blah blah. But that didn’t explain my low blood pressure (high blood pressure runs on both sides of my family), and it didn’t explain my bad periods. There were gaps that I didn’t understand.

And then.

I needed to talk to my integrative health doctor to get some paperwork for my job in DC. I tried to get reception to send it, but they said that I had to schedule an appointment. Boo. So I did, even though I didn’t really feel that I needed to see him. It was COVID times, so I had a phone appointment with him (I love my integrative health doctor, I just hate doctors in general, so I always have an attitude when talking to him).

We spoke about some of my symptoms and he suddenly but strongly suggested that I had Ehlers-Danlos Syndrome and mast cell activation syndrome after asking me some questions. After asking me to come in for bloodwork, we got off the phone.

At first, I didn’t think much of his suggestions, but then, I felt upset. Here I am with yet another disorder—ahem, disorders—at age 30.

So I started researching and read the material my doctor sent me. I was convinced that I had this. I had so many of the symptoms. Not only could I perform several of the actions on the Beighton score, but I also had Gorlin sign—the ability to touch the tip of my nose with my tongue—something I’d always been able to do. Only 10% of people can do this, but 50% of people with Ehlers-Danlos can.

I’m still learning about Ehlers-Danlos and mast cell activation syndrome, but I can’t help but feel that this is a huge missing link in the big picture of my health—a merging of my misdiagnosis and my current symptoms. I also found some tentative research about the role of mast cells in dermatomyositis, and how mast cells could not only be “the first cells” to become activated in dermatomyositis, but also how maybe treating mast cell activation could be a missing link for those with dermatomyositis.

I’m currently working my herbalist to address many of my mast cell related symptoms and am excited to see what the future holds for my health! And the neck tattoo? Don’t worry, it’s on the list for next year 🙂

These 7 Habits Have Dramatically Improved My Sleep Life

2019-04-162019-04-16 by Jenn

As someone who has had lifelong problems sleeping, I know firsthand the frustration that comes with not getting your beauty sleep.

But there’s a silver lining.

All those years of not being able to sleep well and trying different things have helped me slowly improve my sleep life over time.

Now that I’m nearing my 30s and live with my husband, my sleep life has dramatically improved thanks to these five habits I’ve cultivated over the years.

1. No Tech in the Bedroom

My husband and I just keep our bedroom for sleeping (and sex, of course). This means we don’t hang out in there during the day, don’t work in there, and don’t watch TV in there. It’s important to us to not have a TV in our bedroom.

We also don’t bring our laptops into the bedroom either. We do, however, bring our phones, but they are solely for alarm purposes, we never look on our phones in the bed or use them while in the bedroom. My phone is off in the bedroom since I don’t need to wake up at a specific time most days and my husband’s is on airplane mode (scary cell phone radiation, anyone?)

This just our personal philosophy but we don’t want to accumulate a bunch of energy in the bedroom, especially before bed. We find that minimizing our activity in the bedroom and keeping tech out of the bedroom helps the space feel calm and ready for sleep.

2. No Sugar or Caffeine Before Bed

I’ve noticed that I sleep a lot better when doing intermittent fasting, which is how I lost the few pounds I wanted to before my wedding.

I chose to do intermittent fasting by not eating for a period of about 16 hours every day. So essentially, I would eat my regular meals throughout the day, but cut out late night snacks. So I would not eat from about 8 p.m. at night to noon the next day.

This also helped me eliminate sugar and caffeine a few hours before bed. This is a practice I started doing years ago when I found that eating these things at night—think desserts, chocolate, coffee, or even caffeinated tea such as green tea—would make it impossible for me to fall asleep.

3. Using Organic Bedding

I did not realize how much a toxic mattress was killing my sleep life.

A few years ago I realized conventional mattresses are made with dangerous chemicals and can give off volatile organic compounds (VOCs) for years after purchase, which can harm your health and the air quality of your home.

Fortunately, the mattress I had at that time was about a decade old and needed to be replaced, so about a year before our wedding, my husband and I invested in an all-organic mattress. We also chose to invest in organic cotton sheet sets, pillows, and a comforter.

(You can read more about my transition to all organic clothing here and here).

Not only is my organic mattress and bedding so much more comfortable and luxurious than my old bedding (and hella more expensive!), I swear it helps me sleep better knowing I’m not being exposed to toxic chemicals.

4. The Military Sleep Trick

So I know this one is weird but I swear it works! It was developed to help soldiers fall asleep anywhere in less than two minutes.

It’s easy and can be done in three simple steps as you are trying to fall asleep:

Relax your entire body including your facial muscles as you sink into the mattress. Let tension go from places you didn’t realize were tense.
Take ten deep, conscious breaths while keeping your mind clear. For me, if my mind begins to run with a thought, I start over.
Do one of the following three things that most resonates with you:

Picture yourself lying in a canoe on a calm lake with only blue sky above you
Imagine snuggling in a velvet black hammock in a pitch-black room
Repeating “don’t think, don’t think” until you fall asleep

I do the canoe one; if I have trouble sleeping, most nights this helps me fall asleep.

5. No Clock in the Bedroom

We actually don’t have a clock in our bedroom. I haven’t had a clock in my bedroom for the last 12 years.

Looking at the time when I’m trying to fall asleep gives me anxiety so I just don’t see the need to have a clock in our bedroom. Fortunately, I’m a freelancer who works from home so I get to sleep in every single day and don’t need to worry about what time I get up.

Even when you do need to wake up in the morning I recommend setting your alarm and turning your phone on airplane mode and not looking at your phone until the alarm goes off. My husband and I have found this practice super helpful (especially since he needs to wake up in the morning and I don’t).

6. Exercise

I’ve found that exercise plays a huge role in whether or not I sleep well. Usually, regular exercise helps me sleep so much better!

I run but I also lift weights and do yoga on occasion. I also walk a four-mile loop with my neighbor several times a week. Staying active not only relieves stress but helps me fall asleep easier and stay asleep.

7. Addressing My Health Issues

So, of course, many of you know my crazy misdiagnosis story which led me to a wild and wonderful journey of hard lessons in learning how to take care of myself.

I’ve been tested for food intolerances and have eliminated gluten, dairy, genetically modified food, and commercial meat from my diet. I’ve found that, in general, my body doesn’t respond well to grains and so I lead a mostly grain-free diet.

I’m also super sensitive to caffeine and sugar and so keep these very minimal in my diet as well. I’ve worked with numerous herbalists who have helped me to address my minor health issues and supplement my diet so I feel better and live a much more harmonious life these days.

Sleep Is Not Separate

I can usually get to sleep quickly now provided I follow all these guidelines that I’ve naturally incorporated into my routine over the last few years.

Sleep is not separate from the rest of our lives. I’ve found that by considering the effect of my diet and lifestyle on my sleep, I can better care for myself to get that essential good night’s rest!

Do you have any sleep tips that you’ve found have been super helpful?

My Experience with Dermatomyositis: How Gluten Was Behind It All

2018-06-082020-01-16 by Jenn

I’ve previously written about my misdiagnosis of dermatomyositis (which was 11 years ago now!) on HuffPost and Natural News. Today, I want to share more about what happened to me all those years ago here on my personal site.

In an effort to not to let what happened define me, I’ve mostly shied away from talking about my diagnosis of dermatomyositis at the age of 16, although I did write about it briefly when I first started my business on The Green Writing Desk.

But here we are, and I realize that part of my work is helping others and sharing something that I used to consider monumental about myself—that I was diagnosed with dermatomyositis and almost five years later, discovered all my symptoms were being caused by a gluten intolerance.

Yes, it’s that simple.

Here’s what happened and how I came to realize a devastating, life-changing illness called dermatomyositis was being caused by one of the world’s most common foods.

Disclaimer: I am not a doctor. This article is not meant to diagnose or treat any illness or provide medical advice. Please view the following story from my personal experience only. If you have any more questions about my personal experience with dermatomyositis, please feel free to contact me.

The Beginning: Muscle Weakness and Rash

I graduated high school one year early at the age of 16. As many people can testify, I was a punk-ass teenager who had dreadlocks from not brushing her hair and wore men’s clothes to school. I didn’t care about much, and I certainly didn’t care about going to college, which was why I was starting a job as a nanny for a four-year-old boy with autism a week after graduating.

A week after I started my job, about two weeks post-graduation, I was at work one Monday morning when I found I had trouble getting off the toilet. There was a vague muscle ache in my thighs. It was odd, but it wasn’t painful, and I didn’t pay it any attention.

Just days later at the end of that week, a Friday, I was in so much pain and my muscles so affected I couldn’t walk up a set of stairs. I remember going to Starbucks with my friend Kat that night to get passion iced tea, and my legs were in so much pain that I had trouble getting out of the car. I remember crying while trying to walk up the set of curved stairs to my room—I was literally pulling myself up the stairs on the railing. My muscles were giving up.

My disease quickly escalated to the point that I couldn’t work, couldn’t sleep, and couldn’t really do much at all. I first went to an urgent care doctor with my mom and was misdiagnosed with Lyme’s disease, then placed on antibiotics, which made me even sicker.

When the antibiotics didn’t help, we saw another doctor, who admitted he had no clue what was going on, even after I started developing a mild red rash all over my body. This was our family doctor who we’d trusted to care for us for years. I tried to explain to the doctors what it felt like: “It feels like I worked out A LOT, but I haven’t worked out,” and “Everything hurts.”

I had pain medication from my Lyme’s diagnosis and still couldn’t sleep. I was in pain all the time. I felt like I was going to die. This went on for three weeks before I woke up one morning and my legs—my thighs, the initial part of my body that hurt—were extremely swollen. We saw the family doctor once more, who sent us straight over to the hospital, where a bed was waiting for me.

After taking vials of blood and examining my rash, which had come on my face, back, arms, and legs, I was allowed to rest there for a few hours before being woken up in the middle of the night. Turns out I had an irregular heartbeat, and the hospital couldn’t treat me. I was being transferred, to Johns Hopkins in Baltimore, at about 4 a.m. The doctors said all my muscles had become involved and were essentially breaking down.

The Middle: Diagnosis and Treatment

I really hated being at Johns Hopkins. It was a crowded, noisy, inner-city hospital in Baltimore, about an hour away from our house, somewhere a farm girl like me had no business being. My roommate was a girl who couldn’t speak and had swollen lips; I got a glimpse of her once through the curtain.

After being at Hopkins for a day or so and running more tests, I was finally diagnosed. A team of doctors stood in front of me and told me that I would be sick for the rest of my life with a disease called dermatomyositis. It did not have a cause, it just happened. It had a treatment, but was incurable. I would need to be on medication. I might not ever feel better.

This was devastating news. I remember sobbing while they told me, and my mom standing next to my hospital bed, telling me to get it together. I couldn’t. It felt like someone telling me that I wasn’t actually going to get better. How was I supposed to feel about that, at 16 years old?

The main doctor on my team, one who was standing there that day, a rheumatologist whose name I will not disclose here, treated me for the next three years. I was treated with high doses of prednisone intravenously, Methotrexate (a chemotherapy drug) via injection, among other anti-inflammatory meds such as Naproxen. After four days, my parents and I finally convinced the hospital to let me go home with all my medicine.

At home, things were different. I couldn’t walk by myself, couldn’t shower by myself, couldn’t really do anything by myself. My family had to help me do all these things. I felt different. It felt like I had been branded with something, and what I felt now had a name I could identify it by: dermatomyositis.

I got out of the hospital a few days before my seventeenth birthday, in the middle of July. For the rest of the summer and into early fall, my parents and I drove to Johns Hopkins twice a week so that I could get intravenous steroid treatments. At home, I did my injection of Methotrexate once a week. Very slowly, I started getting better from dermatomyositis, although I understood it was a chronic disease. Once my dermatomyositis was more or less under control through lots of medication, eventually, I went back to work and had a relatively “normal” life.

Not Quite the End: Relapsing

Three years after my diagnosis of dermatomyositis, I relapsed. I was weaned off most of my medication by this point, and for a couple years, I felt healthier and happier than I had in a long time.

I had lost the 30 pounds I gained from all the prednisone and then some, weighing in at about 125 pounds when I was about 140 when I’d graduated high school. I started college over a year after I was diagnosed, in the fall of 2008, just going part-time to better manage my stress. I even had a few flings with guys I’d met in college. I felt more like a person and less like a patient, until the fall of 2010, when the first relapse happened.

After experiencing an intense period of stress, my legs started hurting again and I felt fatigued. I was afraid. My bloodwork didn’t show any muscle inflammation; my CK levels were normal. My rheumatologist from Hopkins put me back on my medication—lower doses than before—but it helped me get better.

I didn’t want to be on the medication for any longer than I had to. I’d met a guy in my phlebotomy summer program in 2009 who had gotten me into eating healthy. For the first time, I was paying attention to what I ate, buying my own food, and trying to be better about taking care of myself and more conscious of what I put into my body. The medication made me gain weight, feel gross, break out, and the Methotrexate made me feel nauseous.

So, about eight months after relapsing, in 2011, after going off nearly all my medication, I relapsed again just a few months later. At this point, my Hopkins doctor suggested I find another doctor, given that I was well over the age to be treated by a pediatric rheumatologist.

After asking around, I went to see a doctor in Annapolis who was highly recommended by some women in my lupus group. Lupus is a close cousin of dermatomyositis and these were the closest people I could find to relate to. I’d never met anyone else with dermatomyositis. The group was a helpful support to me during this time of believing I had dermatomyositis.

After seeing this doctor, she told me I would most likely be on chemotherapy for the rest of my life to manage my dermatomyositis. I walked out of the office that day and felt completely and utterly hopeless. The sky was gray and overcast, and as I walked to my car, I tried not to cry. I had just turned 21 a few months earlier. I felt like I was going to die.

The End: Discovering the Root Cause of my Dermatomyositis

It didn’t take me long to realize that I couldn’t accept this fate for my life. I needed someone else who could help me. This doctor was not it. I tentatively felt hope. Maybe this wasn’t the end.

I’m not sure where I got it in my head to find an herbalist, but within a week, I began researching online and placed countless phone calls, trying to find someone who could help me. I spoke to a woman who was moving, so she said she couldn’t help me, but to not give up. Eventually, I found Barbara. I began seeing Barbara in November 2011.

During my second meeting with Barbara, she looked at me and said, “I think gluten is causing your illness.” I was confused. I’d heard about gluten, but only in passing. “Doesn’t that cause stomach problems?” I asked. “It can cause many symptoms,” she told me. In my mind, there was no way it was causing my dermatomyositis.

I thought she was crazy. I even told her so. “I was diagnosed at one of the best hospitals in the country,” I told her. “If they couldn’t figure out what was causing my illness, you won’t be able to.” Barbara maintained that once we’d built my immune system back up a little bit, that she wanted me to go gluten-free.

Ideas are strange things. They grow in our minds. And as I left our meeting that day, her words stuck with me. I did more research and even talked to a friend about it. She had celiac disease, and when I told her what my herbalist said, she didn’t think the idea sounded that crazy. She even gave me a book to read, The Gluten Connection by Shari Lieberman.

By the time I got a couple of chapters into the book, I was convinced that gluten was causing my illness. This is what’s happening to me! I remember thinking. I felt a stirring in my soul that can only be described as a gut feeling that this was it.

Although Barbara didn’t want me to go gluten-free yet, I couldn’t stop myself. I immediately stopped eating gluten. Gluten is mostly in bread products, but it can also be in other weird food products such as soy sauce and beer. I didn’t care. I wasn’t eating any of it.

A few days into my gluten-free diet, my family remarked that I looked weak and pale. It was probably my body detoxing from the gluten; I didn’t know. They were worried about me and weren’t exactly supportive of my decision. Of course, I was still taking medication for my dermatomyositis.

A couple more days into my gluten-free diet, almost one week in, I had an extremely long day. I went to school, then work, then to a friend’s house to hang out. My legs, which were almost always in pain, especially after a long day, didn’t hurt. I remember telling my friend: “My legs don’t hurt. This is amazing!”

My dermatomyositis symptoms disappeared about a week after going gluten-free. A couple weeks later, I weaned myself off all my medication for dermatomyositis, dug my feet in for the long haul of being gluten-free, and I haven’t looked back since.

Now: I’ve Never Felt Better

It’s been almost seven years (update to this post: 2020 will be nine years!) since I went gluten-free, and to this day, I have experienced no symptoms of dermatomyositis and have taken no medication for the illness.

After reviewing my medical history paperwork from both hospitals, I realized that I had never been tested for gluten intolerance. The doctors truly had no idea what was wrong with me. They made their best guess based on their training, treated me, and I got better. But my immune system couldn’t sustain itself without the medication, because the root cause of my disease went unchecked: gluten.

Once I removed gluten from my diet, my body got better. I got stronger, healthier, and gained a little bit of weight back from my skinny frame in my late teens. Today, I work out several times a week (running, yoga, weights, walking) and come in right around 130. I feel healthier than I ever have.

I don’t necessarily blame the doctors. They are only required to take one nutrition class throughout their entire medical education. How could they have possibly known that food was making me sick? How could they have known that my illness wasn’t some cosmic mystery, that it had a cause, a name, and that name was gluten?

I don’t blame my parents either. Should they have taken me to the hospital earlier, rather than waiting three weeks to get me the help I needed? Of course. But, like any other parents, they did the best they could with what they had. I was a child, I didn’t know better, and I was out-of-my-mind sick; I couldn’t advocate for myself. I trusted them to get me help. Although that “help” came much too late, I don’t think it was entirely their fault. I saw the doctor three times during those three weeks I was sick in the beginning, yet only on the third and final time was I sent to the hospital.

I don’t blame myself either. There was a period of time when I did, but the truth is that I didn’t know. I grew up eating Oreos and Hot Pockets. I didn’t know that food could make me sick. I ate what my parents bought and that was it. I didn’t know what gluten was when I was sixteen, didn’t realize that I was making myself sick. So I’ve had to let that go. I know better now, and that’s what matters.

So What Really Happened?

What happened is that my body, for whatever reason, decided to start reacting to gluten and create such a severe immune response that I was diagnosed with dermatomyositis at the age of 16.

If I had caught my disease earlier, it’s likely that it wouldn’t have gotten so bad, although we still wouldn’t have figured out that gluten was the problem. I would have still been on those terrible drugs.

Gluten is a protein. When we eat food, our body is responsible for breaking that food down into digestible particles that the body can use for nutrients. My body decided to start treating gluten like an invader, and since my body was using gluten to nourish itself, my body was attacking pretty much every part of itself.

It sounds weird, yes, but the body can all the sudden decide it doesn’t like something and start reacting to it, quite literally overnight.

I have a couple of theories for why my body all the sudden decided to start reacting to gluten which landed me with a dermatomyositis diagnosis:

I had just graduated high school a year early, had literally no idea what I wanted to do with my life, and was all the sudden expected to figure it out (read: stress).
My family and I had just finished adding an addition onto our house (of which we did much of the work ourselves), and I was exposed to untold numbers of chemicals through paint, insulation, polyurethane, new carpeting, etc. These materials have highly toxic chemicals in them and I was exposed to them every day for several months.

Do I know for sure what caused my body to feel that gluten was the enemy? No. Do I care? Not really. This is my life now, and I’m so grateful that instead of being on chemo, steroids, and other anti-inflammatory drugs, that I just get to skip bread and feel better than I ever have in my entire life.

FAQs

Do you have celiac disease?

I do not believe so, I believe I have a gluten intolerance. Gluten sensitivity, gluten intolerance, and celiac disease are all slightly different versions of each other. It’s also important to remember that an intolerance is different from an allergy. I am not allergic to gluten, my body simply doesn’t tolerate it.

Do you have any lasting effects from your disease?

Yes, but they’re minor. When I get really stressed out, my face gets red and my legs hurt. These symptoms are always temporary and fade within a few hours (provided I deal with my stress!).

I also have to pee frequently thanks to all the prednisone I was on. My weight gain from the prednisone also gave me mad stretch marks. I’m also having minor symptoms of a benign tumor on my pituitary gland; whether this is the result of my illness and all those drugs, I don’t know.

Do you still see a doctor?

I have a deep distrust of conventional doctors, of course. I do see an integrative doctor when I need to and I work with an herbalist to address any other health problems I have.

Did you contact your doctors after you found out?

I did contact my Hopkins rheumatologist to let her know, about two years after going gluten-free. Her response was very nice:

It is great to hear from you. I am very glad to hear that you are doing so well now. You are right—there is still a lot to learn about autoimmune diseases and the interaction between diet and inflammation. I am so happy that a gluten-free diet is working for you. It sounds like you have a bright future planned—please keep in touch and let me know how you are doing. I am sure you will be very successful.

So do you have dermatomyositis?

I do not believe I have dermatomyositis. There is no definitive marker in your blood or tissues that proves that you have the disease. Doctors make their best guess based on your symptoms and bloodwork. I believe my immune system was simply responding to a threat, and when the threat wasn’t removed, my symptoms got so severe that they warranted a diagnosis of dermatomyositis. After so many years of not eating gluten and having no symptoms of dermatomyositis without taking medication, I can only assume gluten was the culprit the whole time.

I’m looking forward to having a bright future without gluten in it, and feel so fortunate that all these years later, I’m still alive, disease-free, and loving life. A huge thank you to everyone who was part of this journey, even if it wasn’t in the way I wanted or imagined. Would I have preferred to not have been diagnosed with dermatomyositis? Of course. But this is my journey, and I can’t be sorry for any of it.

Also, I wrote a research essay on gluten and dermatomyositis while I was at Penn State. If you’re interested in reading more about dermatomyositis and proof that other people like me who had a dermatomyositis diagnosis have healed from a gluten-free diet, just email me and I’ll send it over!

Thank you so much for reading!

How to Respond When Someone Gives You Something You Can’t Eat

2015-06-142020-06-17 by jlr5810

It sucks, right? When someone gives you something that you can’t eat. What do you do in these situations?

Normally around the holidays, cookies start showing up at my place and people’s moms’ try to make me stuff. How do you inform them that you can’t eat that cookie or you’ll die (ok so maybe you won’t die, but being in pain is bad enough, am I right)?

I have a few suggestions for how to deal with these unfortunate circumstances, whether they happen with a family member, a neighbor, or someone’s mom. They could happen around holidays, birthdays, or times of woe. Here are my suggestions for how to respond when someone gives you something you can’t eat.

Tell Them the Truth

This works best when you’re dealing with family, friends, or neighbors who are unlikely to move anytime soon.

You don’t have to be mean about it. You can just politely say, “Oh, I’m so sorry, but I’m gluten and dairy intolerant.” To your surprise they may say, “Bitch, I made these with flaxseed and coconut flour!” or they may say, “Oh sorry! There’s definitely butter in there”.

Regardless of what they say, you’ll know you told the truth.

Benefits of this scenario:

Next year, they will (hopefully) remember that you can’t eat gluten or dairy and will not make you any more cookies, or attempt to make you special cookies (which are, admittedly, the best kind).
You won’t have to lie when they follow up with you: “How were the cookies?!”
You’ll feel good speaking up for yourself and informing your giver.
You won’t have any cookies to dispose of to the raccoons (who should really not be eating gluten anyway).

Cons of this scenario:

Your giver may not remember that you declined these cookies, and give them to you again.
Your giver may not remember that you didn’t eat their cookies, and still ask you how they were later.
Your giver may misunderstand the meaning of “intolerance” or “allergies”, and think that you’re just avoiding these things for other reasons such as weight loss and say, “But you’re so skinny!” prompting you to think that they secretly think you’re fat and are therefore trying to be reassuring about your slimness.
You may feel rude for declining them. And you’ll definitely feel left out when everyone is eating them and you’re not.

Politely Accept and Say Nothing

This is best when you’re working with an unfamiliar host or giver. It’s likely you’ll never see them again and who cares if you touch those cookies and then toss them in the trash?

There’s no follow-up, no thank-you cards (“Thanks so much for the plate of sickness you provided me. I was on the toilet all night and had extreme muscle pain for days. Happy Holidays”), and no confrontation.

Saying thank you and moving on is easy. Defending your honor is not.

Benefits of this scenario:

It’s easy!
You don’t have to explain your intolerance or allergy.
It means little to no extra attention for you and people looking at you like you’re crazy.

Cons of this scenario:

You’re a liar. You’re lying by omission. Shouldn’t that woman know she almost just sent you to the ER?
You may feel voiceless and unimportant. Why shouldn’t you speak up for yourself?
What the hell are you going to do with those cookies now????

LIE

This can work well with people you almost never see, but are not quite strangers. This can also work well with distant neighbors (at least two doors down) or relatives.

Now, I’m not about lying, so I wouldn’t recommend it. There’s a hefty chance it will come back and bite you (like 100% chance). But damn it, sometimes it’s just so much easier! “Thank you so much for the wonderful milk chocolate covered pretzels. They were wonderful.” Barf.

Benefits of this scenario:

You won’t offend the wonderful people who tried to make an effort and give you this food (which may be partly vegan but is definitely NOT vegan).
You won’t have that bad feeling after you crush their hopes and dreams of giving you cookies.
You will not appear ungrateful in any way.

Cons of this scenario:

You obviously just told a huge lie about your body and your health. While you did not admit to eating them, you implied it, and your giver will probably make you the same thing next year and the year after that and the year after that. It’s a huge waste, not to mention you’re indirectly supporting animal torture: you may not be buying the milk that went into that milk chocolate, but this giver is buying it for you. Get it?
You may get found out, which will look really bad for you and all parties involved. Your neighbor may tell your mom, “Oh, Jenn just absolutely loved those milk chocolate covered pretzels” and your lovely mother will say, “Jenn doesn’t eat milk you ignorant fool!”
You’ll feel crappy for making your giver feel loved and appreciated when really you are flushing those pretzels down the toilet while sticking a finger in your mouth in a gagging impression

At the end of the day, you need to decide which one you can live with. I will always advocate for the truth-telling scenario, but will admit that sometimes I fall into the other scenarios. It just depends on who you’re dealing with, where you’re at, and what works for you. Whether you accept the desserts or not, make sure you don’t eat them!

Great Gluten-Free Books

2015-01-242018-12-10 by jlr5810

Ahh ok so here it is, some of my top picks for educating yourself about your body and the world you are living in, especially when it comes to eating gluten-free. You won’t look at food the same after reading this stuff.

**1. In Defense of Food, Michael Pollan**

I would suggest this book for a beginner when it comes to great health books.

Michael Pollan also has another book that is suitable for legit beginners, meaning you think Mickey D’s is cool because it tastes good. This book is called Food Rules and is relatively short and easy to read.

This book, however, In Defense of Food, is a pretty intense account of how modern society has lost the true meaning of food and how we can get it back. Michael Pollan suggests that we eat food, not too much, and mostly plants.

Why? Guess you’ll have to read it and find out, foodies.

**2. The Omnivore’s Dilemma, Michael Pollan**

This one of many great health books takes you on a crazy journey of Michael Pollan’s attempt to eat three very different meals: modern human’s meal, a meal that is bought from organic and local grocery stores, and finally, a meal that he solely creates himself (including getting his own salt from the ocean himself… seriously).

His journey is incredibly detailed and somewhat heartbreaking (mainly to see how far our modern diet has fallen from our ideal diet, and consequently, how far our health has fallen).

This book was a little tough for me to get through; it was just hard to hold my interest after about 2/3 of the way through. But definitely worth the read, I can’t believe Michael Pollan did so much research and work for this account.

**3. The Gluten Connection, Shari Lieberman**

This book changed my life, although I realize it won’t seem nearly as awesome to people who either don’t have a problem with gluten or people who don’t realize they have a problem with gluten.

This is the book that made me realize that gluten was truly making me sick. It’s a pretty fascinating book among the many great health books that talks about why gluten makes people sick, how it makes people sick, and it provides details and other accounts of many people and illnesses that the gluten-free diet helps.

It also talks about why dogs shouldn’t eat gluten and also provides some beginner gluten-free recipes. I would really recommend this book, even if you have no problems whatsoever with gluten, just because it’s fascinating and heartbreaking to see just how much food affects our health.

**4. The Optimum Nutrition Bible, Patrick Holford**

This book is among the great health books as good for knowing, or at least trying to know, what your optimum nutrition should be, including vitamin and mineral intake, which is essential for proper health.

It also talks about why gluten is potentially bad for everyone, advocates for you to stop smoking, and digs its heels in on the importance of vitamin C.

His research and advice have been great assets to my personal health journey; hopefully, you’ll find this book simultaneously overwhelming and helpful (sorry, but it is a little overwhelming).

**5. Gluten is My Bitch, April Peveteaux**

I had a lot of mixed feelings about this book, but I’m putting it on here for the recipes and fun of it.

I have mixed feelings about it because for someone who going gluten-free saved (meaning me), this book is from the perspective of someone who perceives that going gluten-free is an ailment and has ruined her life.

She only appears to be gluten-free because she absolutely had to be or she’ll experience terrible symptoms as she has celiac disease. But, I did love the recipes (especially the nacho one, which I made with dairy-free cheese, of course, and has been a staple in my house for years now) and her humor is great and the writing was entertaining. Worth a read!

6. Delight Gluten-Free Magazine

I really enjoy this magazine, although technically not categorized among the great health books.

I find the articles helpful and the recipes are amazing (albeit complicated on occasion…) It’s great for people who have limited diets and experience symptoms of food intolerances, as its fancy recipes make you feel like you are special and its articles assist with things like what could be causing your migraines (gluten, duh) and how to get kids to eat gluten-free without making it too healthy (is there such a thing?).

Anyway, these are just a few books that have shaped my journey into natural health and are worth the read if you’re gluten-free and wondering how best to take care of your body!

Is Gluten Bad for Everyone?

2015-01-142020-06-17 by jlr5810

So is it? Is gluten bad for everyone?

Me back in spring of 2009, when I shaved my pits, had no arm tattoos, and thought gluten was all fun and games.

Oh, and I love how those signs say “Better For You” in the background. REALLY?

Short answer: no. My answer: possibly.

Some people have negative reactions to gluten. Others do not. When considering is gluten bad for everyone, consider that the reason for this probably has to do with a combination of genes, your immune system, and the kind of gluten you are eating, and maybe even where you live.

What Is Gluten?

Gluten is a protein found in wheat, barley, and rye. And it doesn’t have to be whole wheat. That white all-purpose flour you use is chock-full of gluten.

Gluten is what makes bread dough sticky and well textured. Certain kinds of breads and other bread products have more gluten than others. For instance, bagels are reckoned to have one of the highest gluten contents of all bakery products.

Gluten Today is Different

Let’s be honest: gluten today is not the same gluten it was 200 years ago. This is why you’re probably considering is gluten bad for everyone. It’s just not.

It’s processed differently, making many of the nutrients in it unavailable to our bodies or nonexistent, and giving rise to hordes of people who have an adverse reaction to the protein.

What Gluten Is In

Gluten is present in but not limited to: pasta, bread, cookies, cakes, soups, sauces (soy sauce!), dog/cat food and treats, cereals, oatmeal (doesn’t contain gluten itself but is likely contaminated with it through processing), pretzels, etc.

It’s in so much stuff that it’s kind of amazing people are wondering is gluten bad for everyone.

How Being Intolerant to Gluten Works

A lot of people are eating gluten and feel “fine”. I put fine in scare quotes because some people think they feel their best only because it’s all they’ve ever known. They don’t know that they can feel better. And then you have some people eating this who are really sick like I was years ago.

Gluten sensitivity, gluten intolerance, and celiac disease are considered to be responses that are auto-immune in nature. What this means is that the body attacks itself in the presence of this protein (gluten).

The body can attack any part of itself, meaning it could be the cause of irritable bowel syndrome, ADHD/ADD, lupus, acne, migraines, autism, bipolar depression, schizophrenia, dermatomyositis, and more.

For me, my body attacked my muscles in the presence of gluten. I was eating gluten for about 16 years and was totally “fine” until one morning in June 2007 I woke up to some minor muscle pain. In 5 days, I was crippled and could not walk. I was in a wheelchair at age 16. Read the full story here.

This sounds bizarre, but this can happen with food allergies, and you need to understand that it can happen. Your body can be totally cool with gluten for years and years, and then one day, it can develop an autoimmune response to it, sometimes seemingly overnight (like in my case).

The same goes for other potential food allergens, which is why many people are wondering today if gluten is bad for everyone.

So some people may have a problem with gluten and not even know it. Have an out of control child? Try eliminating gluten. Have IBS? Again, try eliminating gluten. You could go get tested, but I’ve found the best way to know for sure, due to tests being rather inconclusive due to a variety of reasons, is to just cut it out and see if you see a difference.

If you are going to go gluten-free, you need to do it 100%. You cannot just eat gluten “sometimes”. This is not how it works. You need to be 100% gluten-free for at least 14 days and up to 30-90 days in order for this to work, or to see any difference.

Who Reacts?

I think it’s entirely possible that while not everyone may have an adverse reaction to gluten, many people are living with the consequences of having a gluten sensitivity/intolerance/celiac disease and don’t even know it.

So instead of thinking is gluten bad for everyone, think about whether or not it’s bad for you. Get tested or go gluten-free to know for sure.

I would definitely encourage you to do this if you are experiencing some painful/odd health symptoms and your docs can’t figure out what is going on, or they think they know what is going on but they put you on meds that don’t help. I would extremely encourage you to do this if you are living with an autoimmune disorder such as lupus, dermatomyositis, eczema, Crohn’s disease, etc.

My Gluten Reaction

After what happened to me, I think trying the gluten-free diet for at least two weeks would be beneficial for everyone who thinks that they could feel better.

But of course, I’m biased. The only way to know is to decide for yourself what would be best, not just is gluten bad for everyone.

People ask me if being gluten-free is hard. I say, “Well, it’s easier than chemo.” I was on and off chemo for nearly five years after being misdiagnosed with an illness that gluten was causing.

Where to Find GF Stuff

There are so many gluten-free options out there.

Many restaurants have gluten-free pasta and pizza, if you’re still into cheese (which I’m not). People are understanding that many people have issues with gluten, which is why people are thinking is gluten bad for everyone.

Grocery stores, even ones that are non-specialty now, carry many gluten-free breads and cookies. For me, I don’t like to replace all the things I used to eat back in my Oreo days with gluten-free alternatives.

Why? Because it’s expensive, mostly disappointing (you’ll soon find out why; it’s hard to make healthy flour alternatives taste and look good), and not exactly healthy.

I prefer to eat mainly vegetables and feel good. Plus, you shouldn’t be eating all that sugar!

Gluten FAQ

What is the difference between gluten sensitivity, gluten intolerance, and celiacs?

Gluten sensitivity: a mild form of gluten sickness. People who have a gluten sensitivity may have little or no symptoms from eating gluten. This could stay the same for years, or it could turn into…

Gluten intolerance: a bad form of gluten sickness. People who have gluten intolerance will almost always experience negative symptoms. These could range anywhere from severe unexplained muscle pain to autism. Again, this could potentially stay the same if you keep eating gluten, or it could turn into…

Celiac disease: the most severe form of gluten sickness. People who have celiac disease cannot eat any gluten at all or they will be really sick and experience severe symptoms. This sickness could have symptoms ranging from stomach problems to migraines to skin or muscle problems. The most common symptom is stomach discomfort.

Are gluten and wheat the same thing?

Technically, no. All wheat contains gluten but not all gluten contains wheat. Gluten can be present in wheat, barley, and rye. Wheat has gluten in it, but gluten does not have wheat in it, if that makes sense. If something says “wheat free”, this does NOT mean it is gluten-free! You need to read the labels carefully!

To further complicate finding gluten-free items, you need to understand the definition of gluten-free according to the FDA, because these products can still have small amounts of gluten in them that the body can react to.

Why doesn’t my doctor know about this?

We shouldn’t blame the docs, necessarily. They’re certainly not thinking is gluten bad for everyone. They are trained to treat your ailments with pharmaceutical products. Most of them are only required to take 1-2 nutrition classes (if that) throughout their entire medical education. Plus, they are making some cash monies by pushing pharmaceutical products on you.

Ultimately, you need to educate yourself about your health and you need to decide what is best for you.

Of course, you can consult with your doctor, but don’t let them tell you what to do with your body. They are there to advise and treat you, but they won’t look at food as the first cause of your ailments when they really should. I have firsthand experience of how wrong this can go.

Should my pets be eating gluten?

Depends on your pet.

Some dogs and cats, like people, do fine with gluten. Others have a lot of problems with it including allergies (dark eyes, constant itching, seizures, etc.), poor stools (bloody, loose, constipation, etc.), hyperactivity, lethargy, etc. The list can go on and on.

If your pooch is experiencing any type of health problem (think arthritis or gastrointestinal issues), eliminating gluten might be a good idea. The problem is, most grocery stores carry shitty dog food and cat food brands like Purina and Friskies. You need to go online or try a different store to get quality food that’s gluten-free.

Does alcohol have gluten in it?

Depends on what kind. Beer, yes. Wine, whiskey, vodka, rum: no.

Surprisingly, most alcohols are gluten-free. Beer is a big no-no except for gluten-free beer. But even liquors that are made with barley/malt, like whiskey, are gluten-free because the gluten is processed out in the distilling process. Interesting!

I tried going gluten-free and didn’t notice a difference. Is it possible that another food is causing my symptoms?

Absolutely. Dairy, corn, and soy are more of the big allergens. Dairy is a big one for causing acne due to the hormones in the milk. Everyone’s body is different. It’s going to take some work to discover what’s best for you.

Remember, you didn’t actually “try” to go gluten-free if you didn’t give up 100% of gluten for a period of at least 30 days.

Should I be worried about foods being “contaminated” with gluten if I am gluten-free?

Depends how sensitive to gluten you are.

If you have celiac, you need to be worried. You probably shouldn’t even be eating in restaurants that have gluten in the kitchen.

If you have gluten sensitivity/gluten intolerance you might not even notice if you eat french fries that have been cooked in the same oil as wheat flour. It just depends on your body.

For me, I won’t use the same knife or cutting board that had wheat bread on it, or the same spoon to stir pasta that’s not gluten-free. But I’m down to have those french fries.

So which form of gluten sickness do you have?

I believe I have a gluten intolerance. I have never been tested for gluten intolerance for various reasons, among them being:

1. I was super sick when I realized gluten was making me sick, so I immediately stopped eating it.

2. Tests can be inconclusive, especially blood tests (I know this from being a former phlebotomist). Stool tests are the most accurate tests for gluten sensitivity/intolerance/celiac disease.

What if I have other questions?

Feel free to contact me, but there’s a ton of information out there via books and the Internet. You can also see an herbalist or nutritionist. Your doctor may not be so educated about gluten-free, but this will depend on your doc. Stay tuned for my next post about foodie literature, including some gluten-free staples!