Giving adults with autism the skills to build independent lives

Before Josh, 36, arrived at First Place Transition Academy, he had never taken public transportation on his own, much less held down a paying job. But a new pilot program is empowering adults with autism to overcome hurdles to independence. Special correspondent John Donvan, co-author with Caren Zucker of “In a Different Key: The Story of Autism,” reports from Phoenix.

JUDY WOODRUFF: Tonight, we begin an occasional series about people living with autism and other spectrum disorders, A Place in the World.

While reporting the history of autism for their book, “In a Different Key: The Story of Autism,” co-authors John Donvan and Caren Zucker found a program in Phoenix, Arizona, that expands options for people living with autism.

This is the first of two reports.

JOHN DONVAN, Co-Author, “In a Different Key: The Story of Autism”: Why is it a big deal that Josh Kluger gets up every morning and makes his own breakfast and straightens up the place a little, and then remembers, belatedly to go back and grab his lunch before he heads off to work, which takes a quarter-mile hike, texting all the way, before he reaches the bus stop, and then a 45-minute trip with one transfer along the way?

And when I comes on board and Josh shows me how to swipe my ticket, why is that a big deal? Because, until last year, Josh had experienced none of this. No apartment. No paying job. No bus pass even. Actually, he’d never ridden a bus on his own before last year.

How old are you now?

JOSH KLUGER, Student, First Place: I’m 36.

JOHN DONVAN: You only really began being able to ride the bus when you were already over 30?

JOSH KLUGER: I think so, yes.

JOHN DONVAN: What did you have to learn?

JOSH KLUGER: I know learned how — streets.

JOHN DONVAN: And though Josh is not the chattiest person around, except perhaps when he’s texting, you can tell from his stride and from his air of confidence about where he’s heading that Josh really likes the life he has right now.

Is this ours?



JOHN DONVAN: And that he’s going to keep going with it, autism or not.

JOHN DONVAN: With autism, it’s usually been the kids whose faces we see when the topic is discussed, children like these. We root for their success in school and on the playground, and we have come to recognize that even a little boy like this one, who may look disconnected, and whose autism keeps him from speaking many words, nevertheless can sing and therefore also has something to say.

Boy (singing): Never give up on wishes.

JOHN DONVAN: But the kids grow up inevitably, so that the boys whose photo you just saw, they have become these men.

We gathered them together to make a point. This one is now 19-year-old Dylan. And this little boy called Stuart, he is now 22.

Josh, you have met. He is 36. This kid, he is 21 now and named Ian. Craig, he’s a 26-year-old now. And Jake, he grew into a man also. He’s 22.

And the point is, adults don’t get nearly the attention and support the kids do, maybe because they’re not as cute or because people forget that autism is lifelong. But it is. And that fact is the driving idea behind a new pilot program called First Place Transition Academy, located in Phoenix, Arizona, in which these same young men are today the pioneers.

WOMAN: Are you going to mix it? Where would you find that?

MAN: In the store.

WOMAN: In the store?

JOHN DONVAN: There are nine of them in all, paired off together in a cluster of apartments in a complex where their neighbors are mostly retirees who have no autism connection.

They eat together and learn together, two years of specialized training designed to improve their odds of having, let’s call it, a successful adulthood, which means what?

IAN MCCOY, Student, First Place: What doughnuts would you like for that one?

JOHN DONVAN: Well, take Ian, who is now holding down a paying job arranged for by the program, showing that he can be good at customer service.

IAN MCCOY: I got the lemonade and morning buzz.

JOHN DONVAN: Social interactions can be enormously challenging for people on the spectrum. That’s part of the reason that unemployment among autistic adults hovers near 80 percent.

IAN MCCOY: Hello. How’s it going?

MAN: Pretty good, I guess.

JOHN DONVAN: Not long ago, that included Ian, who is an unfailing optimist.

Before you came here, where were you? Were you in high school?

IAN MCCOY: I was in my parents’ house for at least two years. I enrolled. Here I am now a year later. I am satisfied with my future.

JOHN DONVAN: What is your future? Do you know?

IAN MCCOY: It’s hard to predict right now.

JOHN DONVAN: Sure. Sure.

IAN MCCOY: It’s a brief idea. I would like to live in an apartment, pay my own rent, have my own car and have a career, in other words, because I’m — the part-time job is kind of tedious, but it’s my main focus for now.

JOHN DONVAN: Well, that’s all about learning how to do jobs, right?

IAN MCCOY: Absolutely, yes.

JOHN DONVAN: The other men go to other workplaces, a garden that raises produce for sales to restaurants.

MAN: Awesome.

IAN MCCOY: An animal shelter which happens to be a volunteer job, but that doesn’t matter. Knowing how to be professionally responsible and productive does, like being on time for work, dressing correctly for the situation, completing tasks assigned reliably.

These are learned skills that do not necessarily come easily to all members of the group because of their autism.

BRAD HERRON-VALENZUELA, Gateway Community College: So, on the worksheet, guys, you are putting a check mark for the items that you’re going to need to purchase in your first apartment.

JOHN DONVAN: And support staff literally imparts lessons on the logistics of adult life, like this session held in a lecture hall made available by Gateway Community College. It’s a class on how to navigate the options available in public transport, how to get from here to there, with quizzes.

MAN: Exact fare required.

MAN: Exact fare required.

JOHN DONVAN: When it comes to successful adulthood, it’s this sort of mundane-seeming know-how that can in fact be crucial.

How important is that to their success in this program?

BRAD HERRON-VALENZUELA: Yes, it’s critical. And it’s one of the skills that we target really early on. I mean, again, this is the thing that’s going to allow them to access employment. It’s going to allow them to access different social activities, different quality of life things.

JOHN DONVAN: So getting around is key to independence?

BRAD HERRON-VALENZUELA: Absolutely. It’s critical.

JOHN DONVAN: Which brings us back to Josh. That 45-minute commute of his landed us here.

So this is your place of work, huh?



Josh works for the Arizona Diamondbacks baseball team. He and another member of the group named Jake, they have been cycling through a variety of jobs here, some in the office upstairs, and now they’re getting their hands dirty with grounds maintenance.

Josh, you’re not a big baseball fan.


JOHN DONVAN: But you’re a work fan. It sounds like you really love this job.

JOSH KLUGER: In a way.

JOHN DONVAN: In a way. Oh.


JOHN DONVAN: OK. But he loves being a working man, even though his boss here, Marian Rhodes, says it has not always been smooth.

MARIAN RHODES, Executive, Arizona Diamondbacks: He had a thing with his badge, that he was losing his badge constantly. I said, where’s your badge? And he’s like, I left it here, whatever.

And I said — I had to explain to him, your badge is like the key to your home. That’s the key to our ballpark. So, if you lose it, someone has the key to access our building at any time. And I said, so what’s the answer here? We now have him drop the badge off in the morning and pick the badge up. And so he hasn’t — now he is always clocked in and clocked out.

JOHN DONVAN: But that’s what learning is about.

Are you willing to let these guys make mistakes more than you would other people?

MARIAN RHODES: Definitely.


MARIAN RHODES: Definitely.

JOHN DONVAN: Why is that important?

MARIAN RHODES: Because you have to meet them where they are.

JOHN DONVAN: Josh’s mom has been astounded by the change she’s seen in the past 12 months.

BONNIE KLUGER, Mother of Josh Kluger: There are so many ways that he has changed and grown, that he’s going to school, he’s learning classes. He’s taking responsibilities for his homework. He’s taking responsibility for his budgeting.

JOHN DONVAN: This is all new?

BONNIE KLUGER: This is all new.

JOHN DONVAN: This is something he learned as a middle-aged man?

BONNIE KLUGER: As a middle-aged man.


BONNIE KLUGER: The growth has been amazing. It’s really been amazing.

JOHN DONVAN: If Josh were not here, where would he be in life?

BONNIE KLUGER: At our house, doing probably the same thing, and not being very happy. And I don’t know what his future would have been.

JOHN DONVAN: And back at the apartment complex, you can see how these guys, some of whom had no friends to speak of before in their lives, are learning to help each other out.

They are, in short, a community. And while this pilot project has enrolled only men, who today make up roughly 80 percent of people recognized as autistic, the full program will grow to include women as well.

But now something needs to be said as that group shot we started with, and in particular about the man on the lower right. He was once that singing boy, and, in fact, he doesn’t live with the other men. He can’t, because his autism affects him differently from the others. But there is a place being built in Phoenix that will also have room for him.


7 Day Banting Meal Plan and good-to-know food facts:Best Weight loss Program

I started Banting just over a year ago – I didn’t need to lose weight, but hearing my Pilates teacher boast about all the energy she had, I had to try it! I’m no doctor or scientist – this article rather, serves as my experience on the Banting diet & what I’ve personally gained from it! You won’t believe the lies we are fed, pardon the pun, on a daily basis by the food industry.

Here are a few good-to-know food facts:

*Sugar raises Cholesterol and feeds heart disease, not fat. Sugar causes you to store fat, raises bad cholesterol, raises blood glucose and insulin levels.

*Grains contain a mineral blocker that prevent the absorption of calcium, magnesium, iron, copper and zinc.

*Eating protein in the morning is a good way to combat hunger later in the day. But don’t overdo protein, it’s converted into glucose and we now know excess glucose (sugar) is stored as fat. Banting is not about increasing your protein.

*Pure Organic Virgin Coconut Oil is best to cook with as it’s the only oil stable enough to resist high heat damage.

*Your body only needs one teaspoon of sugar to function optimally.

*I used to drown my salads in flaxseed oil as I was too told how healthy it is! Rather, it’s packed with Omega 6 which is highly inflammatory and basically toxic! Vegetable oils are usually GMO and are extracted using chemicals. In a nut shell – seeds oils are heated to very high temperatures and use chemicals to strip the rancid taste and pumped with more chemicals to give it a nutty flavour. It’s just down right evil!

*Butter is good! Filled with vitamin K & D– the margarine business lead us to believe it was bad. You just have to look at the ingredients list on a good block of butter and a margarine tub and compare! Also the process of making butter is so simple – no heating / chemicals etc.

*avoid salt. Not true. By cutting out all the processed food in your diet, you’ve already eliminated most of your salt intake. Pink Himalayan salt can liberally be used over food to make veggies tastier as we do need some salt. Normal white salt is bleached

*and I hear it all the time! But how can fruit be bad? Well, it’s full of fructose that gets stored as fat in the liver. Fructose is the exact same sugar found in sweets. The odd piece of fruit is fine. But just 5 servings of fruit a day is equivalent to a 500ml soda.

What I love about this low carb high fat lifestyle & try to focus on in my diet – and it really has to become a lifestyle, is:

1.) Eat grass fed meat / diary & go organic where you can

2.) Greens, greens & more greens. And colour! Load your plate with good, healthy & if possible, organic veg!

3.) Knowing which are the good fats – butter (again grass fed), macadamia nuts & macadamia nut butter, olive oil, coconut oil, fatty pieces of meat – no need to be shy. I used to be terrified of butter. Now I put a big dollop in my eggs each day & I’m fuller for longer & have more energy!

4.) Cutting down on milk. This depends on the person. Some people don’t digest diary well, and I never knew milk is fairly high in carbs. I tend to feel better if I substitute the odd cappuccino with cream rather than milk froth, or just cut the milk back in general. So if you’re still feeling bloated or not losing weight, try cut back the diary.

5.) Cheese however agrees with me! Mmmm yes!! Cheese is my go to snack if I do happen to feel peckish. But since Banting, I very rarely feel like snacking. I eat 3 meals a day and that’s that.

At the end of the day – the wonderful part about this lifestyle is it’s not a “diet”. Never feel hungry, cut out cancer feeding sugar & eat real food. No chef will ever turn their head up at great, organic, fresh produce! Ditch the stuff that comes in packets and you’re half way there!

Here’s a 7 day meal plan to try. If you’re wanting to lose weight and get the most out of this diet, cut alcohol & sugar completely. Calibrate your body and then re-introduce items and see how your body responds – you can adjust & tweak according to how you feel. Also, pick the week your start. Perhaps over a weekend when you can rest, as you will most likely get the low carb flu and experience headaches, nausea etc. As your body rids & withdrawals from all those nasties.

Here’s what your eating plan could look like. Unlike any diet I’ve tried before, I’m sure you’ll find the meals scrumptious & satisfying.

7 Day meal plan:

For breakfast, cream in your coffee helps ‘up’ the fat and bring down the carbs – also making breakfast more filling!


Scrambled eggs with butter, spinach & feta

Rocket, blue cheese & avo salad with olive oil, salt & pepper (you could add cherry tomatoes, olives, seeds, nuts).

blue cheese & avo salad with olive oil

Roast Chicken with Double Cauliflower & Cheese, green salad


Full fat Greek yogurt, blue berries, crushed macadamia nuts – even dollop a big spoonful of macadamia nut butter
Full fat Greek yogurt, blue berries, crushed macadamia nuts

Salad with left over chicken (Olives, avocado, olive oil and/or cheese always add a high fat component to make salads more filling)

Steak (grass fed) Cauliflower Cous Cous


Omelette with filling: bacon, cheese, spinach, avo, tomatoes – you can change the filling up to keep breakfast interesting

Banting crackers with cheese, pesto, tom, macadamia but butter if you feel like something sweet

Grilled chops with eggplant & feta salad

Grilled chops with eggplant & feta salad


Grilled Halloumi, strawberries & herbs (side of low carb toast if needing something more)
Grilled Halloumi, strawberries

Left over Feta & Eggplant Salad

Lettuce & meatball wraps (you could use chicken, mince, fish)


Eggs, bacon, avo, rocket

Cheese & crackers
Cheese & crackers

Bun-less burger (you could substitute the bun for lettuce wrap/aubergine slices/ low carb bread roll) and Pumpkin fries with oregano fries with a sweet goat’s cheese fig and avocado dipping sauce


Egg & Bacon muffins, full fat Greek yogurt with berries & mixed nuts.
Bacon muffins, full fat Greek yogurt with berries

Low carb Pizza (There are loads of variations on the web from cauliflower to almond flour bases)


Carb free pancakes – think strawberries, blueberries, cinnamon, cream fraiche, mint
strawberries, blueberries, cinnamon, cream fraiche, mint

Broccoli Salad (make a big batch so Monday is sorted!)

Cauliflower Crust Grilled Cheese
If you need a snack or an extra side – try:

  • Boiled eggs
  • Cheese with a dollop of butter on it
  • Spoon full macadamia nut butter
  • Handful of macadamia nuts
  • Butter & Sage Squash
  • Lemon & parmesan zucchini sticks
  • Feta
  • Blue cheese & walnut pesto over courgettes
  • Avocado wrapped in bacon

I hope you enjoy these ideas and way of life. It certainly changed mine!

Author: Kim Gray

Breakthrough multiple sclerosis treatment shows tremendous promise

By Walter Einenkel

There are about 2.5 million people who suffer from multiple sclerosis (MS) in the world. There are around 400,000 cases in the United States. Canada has one of the higher rates of the disease that can affect a person’s brain, spinal chord and eyes. The symptoms can be mild with little need for medical solutions, to very severe with the need for 24-hour care. Two doctors, Mark Freedman and Harry Atkins from Ottawa Hospital in Canada, have pioneered a new treatment for the disease with pretty extraordinary results.

The treatment, pioneered by Freedman and Dr. Harry Atkins of The Ottawa Hospital and University of Ottawa, involves wiping out a patient’s immune systems and then generating a new one using the patient’s own blood stem cells. complex procedure was performed on 24 patients who were followed for up to 13 years to confirm the results. One participant died of liver failure due to the treatment (which has since been modified to make it less toxic to the liver) and another required intensive care for liver complications.

But of those who successfully received the treatment, the study found that not a single participant experienced a clinical relapse, there were no new active inflammatory brain lesions that could be detected, not a single participant required drugs to control the disease and, crucially, 70 per cent of participants experienced a complete stop in disease progression.

This treatment is for early and aggressively progressing MS and not for patients who have accumulated disabilities over the course of a long time with the disease. However, the importance of these results cannot be understated. There is reason to believe that this treatment, along with modifications to lessen the more toxic elements, can completely reverse the course of a young person’s life.

Jennifer Molson was 21 in 2002 when she received a stem cell transplant as part of the trial at The Ottawa Hospital. She had been diagnosed with MS six years earlier and the disease had progressed rapidly.

By the time she received the transplant, the formerly active young woman was receiving 24-hour care at The Ottawa Hospital Rehabilitation Centre. She couldn’t feed herself, blow dry her hair, shower or dress without help.

Today, Molson is symptom free, relapse free, skiing, driving, working and living life as if she had never had MS.

At the time, the mortality rate of the treatment was about one in 10. Those odds have been changed favorably since 2002 as medicine and technology has advanced. The study was funded with $6.7 million from the MS Society in Canada. Other hospitals are also working on similar “re-booting” techniques to treat the disease. In England, a young mother, wheelchair bound by MS shortly after the birth of her daughter, went in for the treatment.

The treatment is being carried out at Royal Hallamshire Hospital in Sheffield and Kings College Hospital, London and involves use a high dose of chemotherapy to knock out the immune system before rebuilding it with stem cells taken from the patient’s own blood.

Miss Drewry had the treatment in Sheffield. She said: “I started seeing changes within days of the stem cells being put in.

“I walked out of the hospital. I walked into my house and hugged Isla. I cried and cried. It was a bit overwhelming. It was a miracle.”

Simply amazing.

The whole world celebrates this article: discover the cure for Lupus.

Lupus is a chronic autoimmune disease that can damage any part of the body, from the skin to the joints through the organs. It is a disease that acts by outbreaks and then seems to disappear before returning again.


But researchers say they have discovered that by using a combination of two drugs already exist, it is possible to reverse the effects of lupus in mice.

In a new study published in Science Translational Medicine, researchers at the University of Florida, Gainesville, have discovered that by inhibiting certain metabolic pathways in immune cells that can fight lupus in mice. Researchers at UF Health may have found a way to control lupus changing the way the immune system cells use energy.
“The most surprising result of this study was that the combination of the two metabolic inhibitors were needed to reverse the disease.” Dr. Laurence Morel, University of Florida College of Medicine

Systemic lupus erythematosus or lupus, is an autoimmune disease in which the immune system that is supposed to protect the body against foreign invaders – attacks the body’s own tissues, causing inflammation. Lupus can sometimes have symptoms similar to arthritis.
One of the markers of lupus are CD4 T cells (white blood cells that activate other immune cells). For people with lupus, the metabolism of T cells is overactive. T cells activated involve hyper- increased inflammation, and this means more physical damage. When researchers blocked glucose metabolism by using an inhibitor of glucose, metformin (common treatment in type 2 diabetes), CD4 T cells return to normal activity (metabolism CD4 slows down) and lupus symptoms were reversed. “If the T cell is normal, the disease gets better,” Morel said.
The research team initially had the idea of using a two-pronged attack on lupus after seeing a similar approach in research in cancer, said Dr. Laurence Morel, director of experimental pathology and professor of pathology, immunology and medicine laboratory in the UF College of Medicine.
“If it works to limit the metabolism of cancer cells, should work to limit metabolism in T cells,” said Dr.Morel.
The efficacy of metformin in restoring normal function of T cells when studied in the laboratory is also bode well for potential future application for the treatment of patients with lupus.
“That suggests that metabolic inhibitors can also be used to treat patients,” Morel said. “It’s the first time has shown that it can have an effect on the symptoms and manifestation of lupus by normalization of cellular metabolism.”
The two used in research in this study drugs were shown to inhibit the metabolic pathways before, but the combination seems to be the key to success.
“The most surprising result of this study was that the combination of the two metabolic inhibitors were needed to reverse the disease, when they could have predicted, based on models published by other people that one would work,” said study co-author ,
Dr.Laurence Morel, director of experimental pathology and professor of pathology, immunology and laboratory medicine at the University of Florida College of Medicine.
Among other researchers who worked on the project are: Dr. Eric S. Sobel, associate professor of rheumatology and clinical immunology professor; Dr. Byron P. Croker, a professor of renal and surgical pathology; and Dr. Todd Brusko, assistant professor in the UF Diabetes Institute, department of pathology, immunology and medical laboratory.
Their research was funded by grants from the National Institutes of Health and the Alliance for Lupus Research. The human trial will be made in September 2015, favorable results are expected since the tests in mice was a success

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Visiting physician sheds new light on Lyme disease

On a visit to Martha’s Vineyard Hospital, Dr. Nevena Zubcevik challenged conventional diagnosis and treatment of tick-borne diseases.

Dr. Nevena Zubcevik described her findings on Lyme disease diagnosis and treatment, and its effect on the brain, to Martha’s Vineyard Hospital physicians and members of the public last week. — Barry Stringfellow

This past Friday, Dr. Nevena Zubcevik, attending physician at Harvard Medical School and co-director of Dean Center for Tick Borne Illness at Spaulding Rehabilitation Hospital in Charlestown (SRH) traveled to one of the nation’s front lines in the public health battle against Lyme disease to speak to a group of Martha’s Vineyard Hospital physicians. “I wanted to do this presentation by Skype because of all the ticks you have here,” she joked.

Dr. Zubcevik was at Martha’s Vineyard Hospital (MVH) to speak at grand rounds, a weekly meeting of clinicians, which on this day was open to the public, resulting in an overflow crowd at the Community Room just off the hospital lobby.

Over the course of the hour, she shared the most recent findings that she and her colleagues have made on the diagnosis and treatment of Lyme disease, in particular on the 10 to 15 percent of patients who suffer long-term symptoms, defined by Centers for Disease Control (CDC) as post-treatment Lyme disease syndrome (PTLDS). She discussed the protean nature of tick-borne diseases, the importance of public awareness, and the urgent need for the medical community to step up its game.

“Graduating medical students and doctors really aren’t educated about the gravity of this epidemic,” she said. “There’s a gap there that needs to be filled. We’re all responsible to educate our young doctors about what this entails.”

Dr. Zubcevic said the recent revelation that actor, singer, and songwriter Kris Kristofferson was cured of dementia once he was properly diagnosed with Lyme disease should be a lesson for medical professionals on how pervasive the disease is, and how often it is overlooked.

“Sudden-onset dementia should really be a red flag for Lyme [disease], especially in people with compromised immune systems,” she said.

“Everyone over 50 has a compromised immune system.”

Dr. Zubcevik said that doctors and parents should know that Lyme presents differently in children than it does in adults. “71 percent of the time, headache is the most common symptom in children,” she said. “Mood disturbance, fatigue, and irritability are also frequent symptoms in children. If they are acting out in school all of a sudden, get them tested.”

Dr. Zubcevik cited a particularly compelling example of undiagnosed Lyme disease where a 29-year-old male had been institutionalized four times for schizophrenia. After a series of tests, and in concert with a psychiatrist, Dr. Zubcevik began a course of daily antibiotics on him. “The first month he could remember what he had for breakfast,” she said. “The second month he could read a chapter of a book, and after six months he was back to normal. He could tolerate light and sound again, which he couldn’t before.”

Tick truths challenged

Dr. Zubcevik said recent research debunks several commonly held beliefs about the transmission and treatment of tick-borne diseases.

“The conception that the tick has to be attached for 48 hours to inject the bacteria is completely outdated,” she said. “There are studies that show that an attachment of 15 minutes can give you anaplasmosis,10 minutes for the Powassan virus, and for the different strains of Borrelia burgdorferi, we have no idea.”

Dr. Zubcevic said the notion that children, infants, or pregnant women should not be given doxycycline is also outdated. “Dermatologists have prescribed doxycycline to kids for years to treat acne; why not for such a debilitating disease?”

She also said the two-day course of doxycycline, often prescribed for people who find a tick embedded on their body, has little or no prophylactic value. “It should be 100 to 200 milligrams of doxycycline twice a day for 20 days, regardless of the time of engorgement,” she said. “It is not a two-day thing.”

The blood tests currently used to detect the presence of the Borrelia burgdorferi bacterium are the enzyme-linked immunosorbent assay (ELISA) and the Western blot test.

Dr. Zubcevik said research has shown there are 10 different strains of Lyme disease in the United States, and many of them do not test positive on the traditional Western blot or ELISA tests. In a previous email to The Times, she wrote that with current testing, 69 out of 100 patients who have Lyme disease may go untreated.

“The bull’s-eye rash only happens 20 percent of the time,” she said. “It can often look like a spider bite or a bruise. If you get a bull’s-eye it’s like winning the lottery. Borrelia miyamotoi, which we have a lot in Massachusetts, will not test positive on either test. That’s a huge problem, so the CDC is moving toward a different kind of test.”

Borrelia miyamotoi also has the potential to spread rapidly, since it’s transmitted directly from mother to offspring. Nymphal deer ticks need to feed on a mammal, most likely the white-footed mouse, to contract the virulent Borrelia burgdorferi bacterium.

In addition to Lyme disease, Islanders are also vulnerable to coinfections such as babesiosis, anaplasmosis, ehrlichiosis, and tularemia, which can also go undetected. “Babesiosis is a malaria-like disease that can persist for months or even years,” she said. “Patients who can’t catch their breath are a red flag for babesiosis.”

Double whammy

Dr. Zubcevik described deer tick nymphs as “the perfect vector” because of their diminutive size — the size of the “D” on a dime — and because of the analgesic in their saliva that often makes their bite almost undetectable.

The bacteria they inject are equally crafty.

“Borrelia burgdorferi is an amazing organism; I have a lot of respect for it,” she said. “It is a spirochete, meaning it can corkscrew into tissue as well as travel in the bloodstream. It can do whatever it wants. It’s twice the speed of a [white blood cell], which is our fastest cell. It’s so strong it can swim against the flow of the bloodstream.”

Dr. Zubcevik said there are videos that show a white blood cell pursuing a spirochete, which evades capture by drilling into tissue.

“It’s really easy to see why this adaptive bug can avoid the immune system,” she said.

Dr. Zubcevik said doxycycline stops the bacteria from replicating, but it doesn’t kill them. The rest is up to the body’s immune system, which is the reason some people suffer for so long.

“There’s a lot of neurotoxicity, which is why people feel so bad all over. It’s like a toxic warfare going on inside the patient’s body.”

Controversy continues

Last week, Governor Charlie Baker rejected the legislature’s controversial budget amendment that would have required insurance companies to cover the cost of long-term antibiotic treatment which chronic Lyme Disease (CLD) advocates maintain is the most effective treatment for their symptoms. The Massachusetts Infectious Disease Society, representing more than 500 infectious disease specialists, does not recognize CLD, and urged the governor to reject the amendment, asserting that long-term intravenous antibiotic therapy can be dangerous and possibly lead to “superbugs” that are immune to current treatments.

The CDC also does not recognize CLD or the use of long-term antibiotics for PTLDS. “Regardless of the cause of PTLDS, studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo,” the CDC website states. “Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications.”

However, the website also says, “Recent animal studies have given rise to questions that require further research.”

Dr. Zubcevik diagnoses the condition with a different name — “persistent symptoms related to Lyme disease.”

“I’m new to this field,” she said. “For me there’s no controversy. We have to innovate, we have to find solutions. [SRH] has connected with top scientists from all around the country. Studies show that after treatment in mice, dogs, and monkeys, Borrelia burgdorferi bacteria are still there. This has also been shown in human tests.”

Citing the work of Dr. Ying Zhang at Johns Hopkins Lyme Center, she said the most likely effective remedy will be a combination of several antibiotics. In a previous interview with The Times, Dr. Zhang said he has worked on an effective PTLDS treatment for six years, and that current Lyme disease treatments may not clear bacterial debris, or “persisters,” which may be one of the possible causes of PTLDS. Dr. Zhang said that his work on tuberculosis (TB) is his primary focus; however, advances in fighting TB, e.g. using new combinations of drugs already approved by the Food and Drug Administration (FDA), have yielded promising results in the fight against “persisters.”

“There’s also a need to develop a more sensitive test,” he said.

Patient advocate

Although she started out at Spaulding Rehabilitation Hospital focusing on the neuropathy of concussions, Dr. Zubcevik branched out into treating people with Lyme disease in part because both maladies can cause similar cognitive impairment. “I heard Lyme disease patients say they can’t remember what they had for breakfast, or they get lost driving home,” she said. “It sounded the same as concussion symptoms, so we started doing PET scans.”

Positron emission tomography, or PET scan, is an imaging test that uses a radioactive substance that shows brain functioning. Dr. Zubcevik said PET scan of a patient with persistent Lyme disease symptoms showed a brain colored in blue and purple hues, where a healthy brain presented with shades of yellow and green. She showed an image of the patient’s brain after six months of intravenous antibiotics, which was dominated by shades of yellow and green.

Dr. Zubcevik told the hospital gathering that many patients she sees have been suffering the physical, mental, and emotional effects of the disease for so long, they have lost the will to live. “I literally have patients who were just done,” she said. “They couldn’t go on. The first thing I do is validate their experience, and tell them, ‘I believe you.’ Sometimes they start crying because somebody finally listened. Some patients show symptoms of post-traumatic stress disorder because they’ve been ignored for so long. Marriages dissolve all the time because one spouse thinks the other is being lazy. Many chronically ill patients end up alone.”

Treatment at SRH borrows from many different disciplines. In addition to medication, it can include nutrition counseling, physical therapy, occupational therapy, speech language therapy, mental health counseling, and referrals to infectious disease and other specialists as necessary.

Dr. Zubcevik said that the program was initially funded by a donation from a patient who was treated shortly after the clinic opened. “We’re always looking for more funding,” she said.

The current wait list at Spaulding is about four months.

Prevention, prevention, prevention

“Once patients are doing better, I will call harass them on the weekend to check if they are taking the proper precautions,” Dr. Zubcevik said. “Are they using repellant? Are they doing daily checks? Are they treating their dogs? I don’t want to do another PICC line [intravenous drug access] or PET scan.”

Dr. Zubcevik also said many people need to know proper tick removal — using tweezers to grab the head of the tick, not at the body.

“Don’t don’t squeeze the belly of the tick, it will inject the bacteria into your bloodstream. Do not use oils; it can make the tick vomit the bacteria into the bloodstream. If the tick is deeply embedded, go to the doctor.”

More information on SRH can be found at

More information on tick-borne disease prevention can be found on the Martha’s Vineyard Boards of Health Tick-Borne Disease webpage.

Numerous videos on Lyme disease prevention, including Dr. Zubcevik’s presentation, are available on the MVTV website.

Correction – While SRH does offer mental health counseling, it does not offer couples counseling, as was stated in  pervious version of this article. The initial funding for SRH came from a patient but it is not currently funded by that donation, as was previously stated.

22 Truths People With Scoliosis Wish Others Understood

An estimated six to nine million people in the United States live with scoliosis. The condition, which causes abnormal curving in the spine, is often overlooked and mistaken for common back pain. But if not treated early, scoliosis can cause lifelong pain, decreased mobility and, in more severe cases, decreased organ function.

The Mighty wanted to learn more about the often misunderstood condition, so we reached out to ScoliSMART, an organization dedicated to informing the public about scoliosis and the need to find better treatment. The group asked its readers on Facebook and its Scoliosis Warriors Discussion Group page to share one thing they wish others understood about scoliosis.

This is what we learned:

1. “People don’t realize just how much scoliosis affects daily life for those who live with it. No one sees it for what it is: a disability. There are times when I have to stop working or driving to calm my body and the spasms and I cry out in pain before I can continue.” — Jaclyn Christine 

2. “I hate being told, ‘Stand up straight’ or ‘Don’t slouch.’ I can’t help it. It will progress for the worse with time. I also hate that my whole right side is different. I always feel so self conscious.” — Ella Clolèry

"I hate being told, ‘Stand up straight’ or ‘Don't slouch.’ I can’t help it."

3. “Every day can be so different from the last. It’s not just the level of pain. It can occur  in different parts of the back, legs, etc. day to day. It can prevent you from doing the most basic tasks, like putting socks on, washing your hair or simply trying to get comfortable. Also, making plans well in advance is not always an option due to not knowing on the day how one is going to be feeling. Most of all, I would like everyone to know what scoliosis is and how it can affect those with it in different ways depending on the degree.” — Paul Lyndon

4. “From a carer’s point of view, it’s so frustrating when there’s nothing you can do to help ease the pain of the person you’re caring for, apart from just being there for them. It’s about time scoliosis was better publicized in the mainstream media on a regular basis.” — Paul Lyndon

5. “It’s not just a crooked back for me; it’s one hip that sticks way out. I’m constantly worrying about how crooked I look in every piece of clothing I own. It’s having a stomach that sticks way out because my back curves in. It’s not being able to walk up or down hills straight because my legs are an uneven length. It’s about being so sore at the end of the day all I want to do is lie down… but I can’t even be comfortable doing that. But most people just think, ‘Oh, its just a little curved spine.’” — Tifani Nichols

6. “It affects me 24 hours a day, seven days a week.” — Joanna Bullock 

"It affects me 24 hours a day, seven days a week." — Joanna Bullock

7. “The constant pain, the lack of ability to do certain activities, the emotional and psychological stress we endure on a daily basis. This isn’t something you can simply stretch out or ‘deal with.’” — Andrea Richardson 

8. “No two people are identical in their scoliosis journeys.” — Amanda Elaine DuPage

9. “Bras don’t fit right, shirts don’t fit right, pictures where you have your back to the camera are to be deleted, burned and never see the light of day. Your life revolves around what feels comfortable (slouching and uneven shoulders) and what will benefit you in the long run (good posture). Finding a hairdresser who not only knows you have it but also knows you need those few extra seconds to ‘adjust’ in the mirror so you don’t wind up with an uneven cut because they’re using your shoulders as a guide. Your life just becomes this constant struggle of being even and aesthetically pleasing. Nobody wants to be ‘the girl with the humpback.’” — Chelsea Ellis

10. “It’s more than just a backache.” — Alanna Randall

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11. “Something as simple as a sneeze or hitting a pothole can throw my entire back into a spasm or pop my ribs out of alignment. Activities with impact like running and aerobics are totally out of the question.” — Rachel VanRinsum 

12. “I can’t stand up straight no matter how much I want to, because [my spine] isn’t straight. [It] has three curves.” — Julie Jones

13. “The pain isn’t caused by ‘sleeping on it wrong.’” — Susan Burkheimer

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14. “When I outwardly express any pain, that means  it’s already at the point that I can already hardly bear it.” — Hannah Hippensteel 

15. “Scoliosis is more than not looking normal. I’m a mother of two. I try my hardest to do things regular moms do, but it’s hard. I get tired easy, my back starts hurting during the smallest activities, but still I push through the pain to do as much as I can. I’m not lazy. My house is dirty, but it’s because I don’t have the strength and stamina to get everything done at once.” — Amanda Blake 

16. “No I don’t stick my butt out on purpose to get attention — my lower back has an exaggerated arch. Deal with it.” — Hattie Rose Pacheco

17. “It’s a physical condition, but the emotional toll can be so much worse. People may not notice your curve or rib hump, but just because they don’t see it doesn’t mean you aren’t thinking and worrying about it constantly. Scoliosis and depression can go hand in hand. It can just crush a young girl’s self-esteem. It’s not just about the physical condition.” — Lauren Higginson

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18. “Scoliosis does not define me.” — Bridget Brandon Thompson

19. “We’re not just making excuses for not being able to do things.” — Alisha Marusa

20. “It doesn’t only change the way you look, it changes the way you feel about yourself.” — Sandra Marie Lacy

21. “To show my husband what it’s like to have scoliosis, I once took a plastic straw, stood it upright and tried to push straight down. It took some force to smash it. Now that straw has a crease in it, kind of like my back. When I tried standing it up again, it smashed much easier. That’s the additional force I have to contend with every day. It takes that much more energy for me to just stand up and do normal tasks. That doesn’t mean I’m broken and can’t do those things, but it just takes some extra work.” — Nicole Lynam

22. “Just because my hips don’t match on the same level and my back looks different from yours doesn’t mean I’m any less beautiful.” — Karen Ashley Stansbury

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*Some responses have been shortened and edited.


20 Tips for People Diagnosed with Narcolepsy

I was diagnosed with narcolepsy last year and have since then been learning how to manage the disorder. Besides, Google searches, information from my doctor, and online groups, I learned by experience mostly. While what works for each person may vary, narcolepsy is hard to control and deal with for everyone. I thought this list would be good for anyone that has narcolepsy or loves someone that has it to consider, especially if you are just finding out you have it. These are the things that I have learned:

  1. No caffeine after 6 pm or preferably no caffeine EVER. The temporary energy boost is just not worth the plummet afterwards, or affecting your ability to sleep well at night.
  2. No alcoholic beverages at night except on special occasions. It just seems to aggravate symptoms the next day, and it’s not okay to ever drink with certain medicines for N.
  3. Keep a strict bedtime and morning alarm. A routine time for going to sleep and for waking can signal your brain and body go through more normal sleep stages. Of course also getting eight hours is also a must, and maybe everyone’s different on this but I have found I do better if I go to bed by 10:30 pm and rise by 7 or 8 am. So about nine hours is the magic number for me. Any more or less and I’m ruined for the day.
  4. Exercise at least twice a week and try to do stretches everyday. Stretches wake up your body which can also signal your brain it should be awake. Stretches also help with cataplexy I’ve found.
  5. Don’t fight a sleep attack and try to continue functioning. It only gets worse if you don’t give in. Better to take a nap and get it over with. I have gotten hurt, broken things, made situations worse, had huge mood swings, and even had anxiety attacks because I won’t stop fighting it and just lay the heck down somewhere.
  6. On that note, do not ever get in your car if you even think you feel a sleep attack coming on, or if you are feeling disoriented or sluggish. If you get caught out somewhere when it hits you, take a nap in your car before driving if possible. Make sure you are in a safe place, and lock your doors though.
  7. In general, slow down and take care when driving, going up or down stairs or ladders or anything where a slip or mistake could result in an accident.
  8. Write everything down, keep a good planner, I use a regular spiral bound weekly planner, and also have found Microsoft One Note especially helpful with keeping up with large amounts of ideas, plans or projects. Keep a good supply of small notebooks. I also like to keep a sharpie on top of the fridge and a magnetized to do list on the fridge, so I can write on it whenever something occurs to me. If I’m in the middle of something it only takes a second to walk to the fridge and scribble and get back on task, so I don’t get distracted and forget what I was doing before.
  9. Don’t worry about trying to appear normal or about being impolite if you are not feeling well and are not able to participate in a conversation. Just say, I’m sorry I’m not feeling well and keep your silence.
  10. For many narcolepsy medications it is important to take them at the same time each day in order for them to work well. I found this to be especially true for Nuvigil and somewhat for Xyrem.
  11. Don’t get out of bed after taking a dose of Xyrem! You could end up on the floor!! (Yes, that very nearly happened to me.)
  12. Avoid stressful situations as much as possible. Stress aggravates narcolepsy for most people. This means if trying to function while dealing with symptoms is causing stress, you need to let whatever you are worrying about go or stop pushing yourself to get something done. Just let it go and give yourself a break. I’ve been in a crazy cycle of symptoms getting in the way of responsibilities and relationships and causing stress, then the stress causing my symptoms to get worse!
  13. If you have anxiety attacks, pay attention to how you are feeling, and you may discover that you are having sleep attacks, but ignoring it well enough that you keep going. You pay for it emotionally until you finally break from the mental effort of trying to focus and function. If you start feeling unreasonably upset or upset over things that don’t usually upset you, you may just need to take a nap.
  14. Don’t get discouraged if you are doing everything you can and still have bad days. It happens. For me dealing with narcolepsy is like walking a tight rope. One little slip off your routine: a missed dose of medicine, daylight savings, stress, more activity than you can handle, too much caffeine, staying up too late, etc. can throw you off completely for a few days.
  15. Eat healthy and take vitamins. Narcolepsy tends to deprive your body of the restful and restorative sleep stages at night. A healthy lifestyle can help combat the negative effects to your mind and body. Some of my favorite vitamins are biotin for hair, skin and energy, B12 for energy, niacin for heart health (really good to take if you take Ritalin since it can be hard on the heart), vitamin C for immunity, and St. Johns Wort helps keep mood swings away.
  16. To add to that, always eat three good meals a day, and keep snacks handy. Never go hungry, or your energy level will plummet.
  17. Don’t be ashamed to admit you are unable to do something. Don’t be afraid to ask for help, and don’t give up on people you care about that don’t seem to understand. Just because you could push through something and suffer through it doesn’t mean you should. Most people don’t understand even if most things are just as possible for you to do like everyone else, some things can be much harder for you than it is for them. Things like remembering important dates and keeping up with bills and finances have been a problem for me. Also, working certain jobs is questionable if you are able to keep a job at all. It is up to you if you really think you have the strength to subject yourself to the extra effort that will be needed, but realize that even if you have the mental strength and determination, doesn’t mean your body will go along with it or it’s healthy for you to do it. On the other hand, if you think it won’t aggravate your narcolepsy and you’ve got it in you, don’t be afraid to try!
  18. Erase all negative perceptions of you being lazy, ditzy, clumsy, careless, inconsiderate or rude that you developed prior to diagnoses. Those are only wrong assumptions. The facts are extreme, excruciating sleepiness, low awareness and alertness, impaired cognitive function and memory, loss of muscle strength and mobility, anxiety. I still struggle with this all of the time. When I find I’m doing or saying something awkward, I get the urge to make fun of myself to make light of it and say things like “Duh!” or “I’m just clumsy.”
  19. Rule 18 does not mean you should not try to control symptoms, which is best for you and everyone around you! Try to identify what is a symptom or caused by symptoms versus what might be just your personality or a regular human flaw. It helps because if something you want to change about yourself is a symptom then it might easily be countered with a solution. For example, before I got diagnosed I would have moments of extreme anxiety without knowing the way I felt was very abnormal or knowing why I felt that way and freaked out on those close to me. Now I know that when I feel that way it’s because I need to go lie down. If I start feeling agitated, and I don’t know why, I will stop trying to do whatever task I’m on, tell whoever is around that I don’t feel well, shut myself in a quiet room, and take a nap- a much better solution to the problem than having a panic attack and making my family upset. My point is don’t feel bad about how symptoms make you look, but don’t give up trying to manage your condition so that things can be more normal for you.
  20. Life is good. Happiness is a choice, no matter your circumstances. Be happy. Find what uplifts you and cling to it! For me, it is God. When I am weak and feel helpless and lost, He is my strength, my hope and my guide, and where I find my purpose.

15 Things People Living With Cystic Fibrosis Want You To Know

It isn’t “just a bad cough”.

The Toxic Truth About Gluten-Free Food and Celiac Disease

by Jordan Reasoner

“What is food to one man may be fierce poison to others.”—Lucretius

Today, even the smallest grocery stores across America are beginning to carry gluten-free foods in a “healthy living” section, right next to the green tea.

Gluten-Free foods are becoming ubiquitous and synonymous with living a healthy lifestyle… even for people without Celiac Disease.

But is gluten-free really healthy? Will it make Celiac Disease a distant memory?

I’m here to tell you no… and there’s a lot to talk about.

The Gluten-Free Diet is the Wrong Prescription for Celiac Disease

In the last part of this series, I showed you that the Gluten-Free Diet isn’t enough to treat Celiac Disease patients and anyone using it as their only treatment protocol is at risk for dying much sooner than they should.

Evidence is piling up that high inflammation, poor vitamin status, and leaky gut persist on a gluten-free diet, which leads to one thing: untreated Celiac Disease…

But what could possibly be wrong with a gluten-free diet?  Doesn’t gluten cause Celiac Disease?

Yes, gluten causes Celiac Disease and it must be eliminated to treat Celiac Disease. In fact, research suggests that even an acute gluten exposure triggers a 70% increase in intestinal permeability (leaky gut) and spikes inflammation for as much as 6 months.[1]

But there’s a laundry list of other foods that drive inflammation and keep the gut leaky. Don’t get me wrong, gluten is the worst offender. But a Celiac’s gut is severely damaged and highly susceptible to poor food choices. If you don’t remove the “other dietary triggers” contributing to the disease, you’re going to end up sick and pissed off like I was. Going gluten-free isn’t enough… and here’s why.

Eating Gluten-Free is Usually Toxic

Mainstream literature on Celiac Disease tells us that eating gluten-free is a healthy lifestyle choice and doctors regularly explain it as the only way to treat newly diagnosed Celiac Disease patients. But the treatment plan is dripping in the same conventional wisdom that created the current Standard American Diet (SAD).

That’s the rub: the average gluten-free diet is built on the same foundation as the SAD… both are low-fat, highly processed diets made up of toxic foods.

The biggest problem with the Gluten-Free Diet is the reliance on processed foods that are low in nutrients and high on toxins.

The standard Gluten-Free Diet typically contains 4 specific food toxins that contribute to leaky gut, inflammation, and poor vitamin status:

  • Cereal grains (like corn, rice, and oats)
  • Soy (soy milk, soy protein, soy flour, etc.)
  • Industrial seed oils (Canola oil, Rapeseed oil, safflower oil, and sunflower oil)
  • Sugar (especially high-fructose corn syrup and table sugar)

Even though the worst offending food toxin, gluten, is removed – the Gluten-Free Diet relies heavily on the other four agents of modern disease to create a diet that “looks” very similar to the Standard American Diet. In fact, many types of gluten-free pasta and other packaged foods are loaded with higher concentrations of these 4 food toxins than their original counterparts.

Gluten-free Cereal Grains Are Waging War on Your Gut

In “How Gluten Causes Celiac Disease,” I explained that the main reason we don’t eat wheat and other gluten-containing grains is that they contain a protein called gliadin, which is a prolamine that increases zonulin production causing leaky gut and inflammation.

And remember when I said that plants carry weapons of mass destruction?

It’s no joke… plants are concerned about their survival just like we are. They don’t want to die, which is why they have defense mechanisms to protect them, like toxic antinutrients and proteins that should deter any living being from eating them.

Most cereal grains contain a toxic protein called “prolamines,” which are knurly, tough proteins that humans can’t digest. The research is very clear: we aren’t equipped to “digest” or break down prolamines small enough to absorb any nutrients.[2]

Toxic prolamines give the plant a protection mechanism for their survival (since they can’t get up and run away). These proteins irritate the gut lining and sneak their way past the intestinal wall in humans and animals that eat them.

Gliadin is the prolamine in wheat, but other cereal grains common on the gluten-free diet have similar proteins that also cause problems:

  • Zein, the prolamine in corn, has been shown to be problematic for Celiacs[3]
  • Avenin, the prolamine in oats, triggers a powerful inflammatory response in Celiacs[4]
  • Orzenin, the prolamine in brown rice, can cause inflammation in the gut of children[5]

Prolamines are the big guns defending the plant from being eaten alive… but that’s not the only part of these cereal grains that cause problems. They contain another secret weapon just as powerful…

Plant Lectins in Gluten-free Cereal Grains Are Toxic Too

If prolamines are weapons of mass destruction, then plant lectins are the plant’s special forces executing individual suicide missions against your gut lining. These toxic sugar-binding proteins don’t get digested either, and they bind to the cells on the gut wall (enterocytes) and prevent them from completing their normal healing processes (causing them to die). Not only that, but research shows they weasel their way past the intestinal wall and cause leaky gut… and trigger our old friend inflammation.[6]

These so-called “healthy, gluten-free grains” are waging war inside your gut because they don’t want you to eat them either… just like gluten. And so far we’ve talked about how these cereal grains promote leaky gut and inflammation…

But remember earlier when I made the point that a gluten-free diet leaves many Celiacs with inflammation, leaky gut, and nutrient deficiencies?

Phytates Steal Vitamins and Minerals Right Under Your Nose

Phytates are not for plant defense – they’re for self-fertilization of the plant. They’re specially designed to keep the plant supplied with the necessary vitamins and minerals it needs to stay alive.

When we eat them, they bind to metal ions inside us, so they can impair the bioavailability of critical minerals like calcium, magnesium, iron, and zinc.[7] Not only that, but they inhibit the enzymes we need to properly digest foods and extract nutrients from them.

It’s a 1-2 punch; they tend to steal the minerals we need and then rob us of the ability to properly extract nutrients from the foods we eat.

A diet high in grains may also reduce the body’s ability to process vitamin D[8] and low vitamin D is associated with leaky gut.[9]  (If you still think you need grains to be healthy, read this article.)

These toxic assaults all add up… and they begin to paint the picture that the Gluten-Free Diet doesn’t work. Even Quinoa, a frequent staple of the “healthy” gluten-free diet, contains large quantities of Saponins. Saponins are another plant defense chemical that severely damages the gut wall and causes leaky gut.[10]

Soy Disrupts Your Hormones and Your Thyroid

Soy is another food that gets coined as “healthy” in mainstream media. It’s found in many gluten-free foods and is even touted as an alternative to eating animals. The Soy Industry has spent a TON of time and money trying to convince us soy is healthy. The reality is: Soy is filled with toxins. Here are the 4 main problems with soy in regards to Celiac Disease:

  1. Soy screws up your hormones because of the presence of phytoestrogens. This is important because these phytoestrogens are linked to cancer growth and infertility problems. Your hormones need to be working correctly to recover from illness.
  2. Soy messes up your thyroid. We already covered that if you have Celiac Disease you’re chances are extremely high of getting other autoimmune conditions of the thyroid (like Graves Disease). The same phytoestrogens messing with your hormones are also implicated in hypothyroidism and potentially thyroid cancer.[11]
  3. Soy is high in phyates, which means it robs you of valuable minerals like calcium, magnesium, zinc, and iron.[12]
  4. Soy increases the need for more vitamin D, which we already know contributes to leaky gut.

For a complete listing of the toxic effects of Soy, check out this PDF from the Weston A. Price Foundation. Just like grains, soy contains toxic chemicals that don’t support recovering from Celiac Disease. Simply put: there’s much better quality food to put in your mouth.

Industrial Seed Oils Inflame Your Body

Consumption of industrial seed oils (corn, cottonseed, soybean, safflower, sunflower, etc.) has dramatically increased in the last century and the Gluten-Free Diet is no exception. Many processed foods off the shelf contain these seed oils that are high in omega-6 fatty acids. In fact, you might even think that some of these oils are “healthy.”

Here’s the thing: when Omega-6 and Omega-3 fatty acids are in a balanced ratio, they don’t promote inflammation. But when Omega-6 fatty acid consumption increases without a corresponding increase in Omega-3 fatty acids, the ratio is out of balance and inflammation occurs. It’s common for a gluten-free diet to be high in omega-6 fatty acids from industrial seed oils and low in omega-3 fatty acids. That’s a recipe for an inflammatory cascade…

Our friend Chris Kresser has one of the most detailed explanations of this process in his 9 Steps to Perfect Health series, read it here for the full breakdown. But the short version goes like this:

“It’s likely that the increase in omega-6 consumption has played an equally significant role in the rise of nearly every inflammatory disease. Since it is now known that inflammation is involved in nearly all diseases, including obesity and metabolic syndrome, it’s hard to overstate the negative effects of too much omega-6 fat.”[13]

Bottom line: industrial seed oils promote inflammation by dramatically affecting your ratio of n-6 to n-3 fatty acids.

Sugar Fuels the Fire Roaring in Your Body

Here’s 141 reasons why sugar ruins your health… but I want to focus on what it feeds.

Carbohydrates and Sugars are the primary food for the bacteria in our gut. Bacteria live on sugar – that’s normal. What isn’t normal is the type of bacteria found overgrowing in the gut of a Celiac patient. Normally there’s a balance between good and bad bacteria.

When the delicate gut flora balance gets upset, opportunistic or pathogenic bacteria can quickly take over and cause “Gut Dysbiosis” or small intestinal bacterial overgrowth (SIBO). One reason Celiacs frequently have gut dysbiosis is a result of the damage to the villi of the small intestine. During the active stages of Celiac Disease, the villi aren’t working properly and carbohydrate malabsportion can occur (meaning there’s suddenly a ton of extra food for the bacteria to feast on).

Here’s where the gluten-free diet fits into all this…

The most common sugar consumed in the standard gluten-free diet is sucrose (or table sugar). Sucrose is made-up of one glucose molecule and one fructose molecule bonded together to create a disaccharide (2 sugar molecules). Sucrose gets broken down by the digestive process into monosaccharide molecules to be absorbed by the gut.

Here’s the catch: the main “splitter” for these chemical bonds is the micro-villi, which we just discussed are damaged and not able to do their job. This leaves us with a surplus of sugar molecules hanging around in the intestine feeding bad bacteria (Read this article for in-depth info on the different kinds of sugar).

In general, the standard Gluten-Free Diet is primarily made-up of processed carbohydrates and processed sugars, which are mostly di- and polysaccharides that need to be “split” in the gut before they can be absorbed. Having a ton of undigested carbs and sugars hanging out in your gut creates the perfect recipe for digestive problems and SIBO…

SIBO Makes Your Gut Leak

Earlier in this series I pointed to the latest research suggesting that we can’t reverse the damage from Celiac disease without reversing leaky gut. So far, I’ve shown you how toxic defense mechanisms in gluten-free cereal grains create leaky gut and inflammation.

Inflammation and Leaky gut are also caused by toxins produced by bad bacteria…

Researchers have identified small intestinal bacterial overgrowth (SIBO) as the only other stimulus powerful enough to trigger zonulin release and create leaky gut the same way gluten does.[14] In fact, they theorize that the body responds to SIBO by opening up the tight junctions as a defensive immune response intended to flush the bad bacteria from the body.[15]

SIBO is an overgrowth condition that drives leaky gut syndrome and the Gluten-Free Diet is the fuel to feed the overgrowth. In one study, researchers took small intestinal biopsies from children with Celiac Disease to understand the role bacteria played in the disease. Their results were frightening: they not only found SIBO, but they discovered these children had 42 different rod-shaped bacteria, 30 of which had never been found in the human small intestine before… 18 of which were completely unknown![16]

Another study looked at adult Celiac patients that weren’t getting better on a gluten-free diet and found that, “SIBO affects most Celiacs with persistence of GI symptoms after gluten withdrawal.[17]

How can SIBO cause so much trouble? 

Pathogenic bacteria produce toxic byproducts that get released in the gut and the bloodstream, (like lipopolysaccharides – LPS). These toxins can severely damage the intestinal cell surface, triggering an inflammatory response as the body attempts to fight off the perceived bacterial threat and cause difficulty digesting and absorbing certain carbohydrates. They can also find their way into the bloodstream and wreak havoc on the liver.[18]

Not only that, but while they happily feed on undigested sugars and other carbohydrates that are supposed to feed you, they release gases like hydrogen and methane. The end result is gas, bloating, and diarrhea or constipation… and perpetually untreated Celiac Disease.

The Inflammation-Leaky Gut Cycle

The bottom line is: If you have Celiac Disease, you have leaky gut and bad gut flora.

We’ve talked about how prolamines and lectins cause inflammation and leaky gut. We’ve talked about how SIBO causes inflammation and leaky gut… and all within the confines of a gluten-free diet.

When your gut flora is out of balance and your gut barrier is damaged, your gut is going to be inflamed. Inflammation triggers leaky gut and leaky gut triggers inflammation.[19] They all feed on each other in a vicious cycle that looks like this:


The only way to begin treating Celiac Disease is to break this inflammation-leaky gut cycle… and the first step is to recognize that gluten-free isn’t enough. There’s a better way to eat that can begin to halt this process.

So, What Can a Celiac Eat to Feel Better?

The answer is: eat easy-to-digest, low-toxin, real foods – foods that don’’t feed bad bacteria or promote inflammation… but at the same time provide adequate nutrition and improve intestinal permeability.

In other words the ideal Celiac Disease diet:

  • Doesn’t contain processed foods filled with added sugars, vegetable oils, additives, or dyes that damage health
  • Eliminates disaccharides and polysaccharides to starve out overgrown bad bacteria (SIBO)
  • Eliminates the most toxic food groups: cereal grains and soy
  • Encourages consumption of low-toxin whole foods in their natural state
  • Encourages plenty of nutrient dense animal products filled with protein and healthy fats
  • Encourages plenty of good bugs (probiotics) through fermented foods or supplements

The Gluten-Free Diet doesn’t fit the bill…

Simply eliminating cereal grains that promote inflammation and leaky gut is a step in the right direction. But if you remove the other 3 toxic foods I mentioned above (soy, industrial seed oils, and sugar) you’ll be one step closer to recovery. At that point, you’ll be eating a whole food, non-processed diet – which is ideal for optimal health based on what we know.

Is that the same thing as a Paleo or Primal diet?

In our experience, a recovering Celiac does well to graduate to the full paleo/primal diet after focusing on healing the gut first. The recovery process starts by starving out the bad bacteria and helping the gut heal by removing normally healthy food that can be problematic. In general, the best results happened when foods are properly cooked and problematic foods are slowly introduced over time.

Before the discovery of gluten in 1952, Dr Sidney V. Haas proposed the theory of SIBO as the cause of Celiac Disease in his book The Management of Celiac Disease because he saw a benefit in treating Celiacs with The Specific Carbohydrate Diet (SCD).

The SCD diet is a form of low-carb paleo/primal that removes common irritants that are problematic in the Gluten-Free Diet, but it also limits the availability of carbohydrates as a food source for bad bacteria and starves them out over time. As the small intestine improves, Celiacs can begin to properly absorb nutrients again. The volume of sugars that are allowed to ferment in the digestive tract becomes less and the symptoms of bloating, gas, and diarrhea start to go away.

Create a Custom Diet to Heal Your Body

Lastly, the SCD framework starts out with simple foods that are easy to digest. Over time you end up creating a custom diet that expands with more foods while you heal… eventually allowing foods that might not have been well tolerated earlier (like nightshades, eggs, nuts, or fermented dairy).

The bottom line: SCD was the only thing that finally stopped my Celiac Disease symptoms and started to reverse the damage to my body before I could even tolerate a paleo/primal diet. If you’re ready to take control of your Celiac Disease I highly recommend you try SCD for 30-days to see how you feel.

We created a free quick start guide to make it easy for you to start SCD. You can get it here:

–> Free SCD quick start guide

Starting a diet like SCD is the first step in reversing the damage from Celiac Disease… but lifestyle and supplement changes are also critical.  In the next part of this series, I’ll explain the necessary lifestyle and supplement changes you need to know about to properly manage Celiac Disease.

Here’s the next part: Why Everyone with Celiac Disease Desperately Needs Vitamin D

– Jordan

P.S. – Please share this with friends and family dealing with Celiac Disease or gluten intolerance. Thank you 🙂

21 things you only know if you’re bipolar

21 things you only know if you're bipolar
(Illustration by Charly Clements for

I was first diagnosed with bipolar disorder, also known as manic depression, when I was 24.

Since then I’ve spent many years hiding it from friends, family and colleagues.

It’s only recently I’ve started writing and speaking openly about it, in the hope that other people, with or without mental health conditions, feel less afraid of them.

While I can’t speak for everyone with manic depression, bipolar disorder, ups and downs or whatever you choose to call it, I believe we have some things in common.

Here’s 21 things you only know if you’re bipolar.

1. It’s hard to finish one thing at a time

On the way up, you start doing the washing up, then you think of a poem and get a quarter of the way through it, then you remember you wanted to alphabetise your books, then you start watching a film, then you do more of the (now cold) washing up.

2. Sometimes the world turns black and white

When you’re depressed you stop enjoying things you used to, nothing seems worthwhile and all you want to do is sleep for a thousand years.

3. It doesn’t mean you’re up and down all the time

Everyone’s different – you can have rapid cycling (where you quickly go from high to low), mixed state (when you have symptoms of depression and mania at the same time), or go gradually up and down with periods of ‘normality’ in between.

4. You may be mildly amused by people who take drugs recreationally

There’s something rather tame about pill-popping in a field of muddy campers on a Bank Holiday weekend when you’re walking around with what feels like a permanent pharmacy dispensing random chemicals in a Russian roulette style in your head.

5. Madness

Everyone experiences mania differently, whether it’s delusions such as thinking you have superpowers, suddenly getting it into your head to get on a train to Scotland instead of the train home, not sleeping because you have so much to write or paint, or suffering hallucinations.

Losing control of your mind is odd to say the least. Imagine losing control of your limbs – having them dance about or do things without your input. Then apply that to your daily thought processes.

6. Stigma

Talking about mental health can be so scary that many people decide not to tell anyone.

The ignorance and discrimination surrounding mental illness is considerable.

Although sometimes the person who discriminates the most against you is you.

7. You are probably a great listener

Somehow you have become the one friends turn to with their troubles.

You don’t know whether this is because you’ve had counselling and therefore have picked up how to listen sympathetically, or because you are more guarded than others about yourself so others fill silences with chatter.

8. Pill podge

Oh great, so as well as being mad I have to be fat too, thanks for that, THANKS VERY MUCH.

9. Sometimes pills have unexpectedly cool side effects

I used to have poker straight hair. My pills have made it curly. Honest to God.

10. The buzz

The buzz of hypomania isn’t fun – it’s more like having espresso in your veins.

Admittedly you can get quite a lot done during these times though.

11. You don’t find suicidal thoughts scary

They’re more like preteens hanging round Justin Beiber’s hotel in the rain – sometimes they change, sometimes they go, occasionally we pay them attention but mostly they just linger.

12. Some people apparently don’t believe mental illness exists

Such people will say things like the above, and things like ‘he was signed off work for stress – not a real illness like gastroenteritis’.

13. You can remember it all

All the times you thought you could breathe under water, bring back the dead, or however mania’s hit you. And you can’t even laugh it off by saying you were drunk or high.

14. You can act

Your most celebrated role? ‘Normal person who is totally fine and there’s nothing wrong at all’.

15. You’re probably a perfectionist

You need to sleep but you told the office you’d bring in homemade cupcakes the next day so you’re still up at 1am rolling edible flowers in egg yolk and sugar.

16. How not to cry when you really want to cry

And where to bolt to when your usual methods fail you.

17. That sinking feeling when you see another ‘crazy’ stereotype on TV or film

People who have suffered from mental illness are far more likely to hurt themselves, or be the victims of attacks.

Despite this, lazy scriptwriters still rely on tropes when they need a scary character.

18. Sometimes you’re a shopping liability

You’ve gone over your overdraft more times than you can remember buying things you don’t even want during a manic phase.

During mania or hypomania your brain makes weird connections and all of a sudden it makes perfect sense to buy a set of golf clubs when you haven’t played a day in your life.

19. Alcohol is usually best avoided

Alcohol is a depressant.

Adding this in to your natural brain chemistry and mood stabilisers isn’t fun the morning after.

Normal hangovers are bad enough – yours are worse than a coke come-down and often leave you a weeping, morose mess.

20. Relationships can be hard

I once dumped the man I loved during a manic phase and we never recovered.

Not everyone can face mental illness, but then relationships can be challenging for everyone, in all kinds of ways.

A friend who is also bipolar has been married for years, which gives me hope.

21. You are stronger than you know

Sometimes getting through another day is a huge achievement. Don’t give up.