To all the doubters out there: Gluten sensitivity is real.
We’ve not all been brainwashed by celebrities endorsing a gluten-free diet as the best weight loss trick up their sleeve.
We don’t need reporters, bloggers, and internet bullies to tell us that the whole gluten issue is all in our collective heads.
If you’re a non-believer, a doubter, or someone who doesn’t understand how profound an effect food can have on your body, just look at my picture.
I write this because Scientific American Magazine published an article online dated August 21, 2013 that says that “people who have true gluten sensitivity actually suffer from something called Celiac disease.” [emphasis is mine]
True gluten sensitivity? I’m sorry, does that mean that my sensitivity to gluten is false, fictional, or fake? Yeah, I don’t think so.
UPDATE July 27, 2016 — Researchers at Columbia University have found markers for gluten sensitivity that differ from those that occur with celiac disease. You can see the study HERE.
My Gluten Sensitivity is REAL
[Click HERE to Tweet this message!]
My former life filled with excessive trips to the bathroom; horrible gas and diarrhea; inflamed nerve pain; chronic headaches; a depressed immune system unable to fight off any colds; mental fogginess; chronic exhaustion; red, scaly skin patches on my body and face, and a nearly 20 lb weight gain says otherwise.
When I look at my “before and after” photo, I don’t even recognize myself from 2007. It doesn’t even look like me.
And did I mention that I have blood tests from 2008 that demonstrated antibodies to gluten? That’s a little difficult to just write off should someone need to see some labs.
Despite everything I’ve been through and countless others who (like me) share our experiences publicly to offer support and words of wisdom to others on this journey, it’s just ‘sexier’ for news outlets to make our experiences out to be anything other than real (or as this article points out – true).
My Gluten Sensitivity is Real
“So in spite of what you’ve heard from the world of celebrities, adhering to a gluten-free diet without a true diagnosis of Celiac Disease has not been shown to be of any benefit,” states Sanaz Majd, MD (a family medicine specialist) in the 5-minute audio segment on the post in question at Scientific American Magazine. [emphasis is my own]
Dr. Majd continues, “so if you’re not Celiac, eliminating gluten won’t help you lose weight or be healthier no matter what the internet myths say.” [emphasis is my own]
They’re all “myths”?
So what Dr. Majd is saying, and subsequently Scientific American Magazine by publishing this piece, is that those of us who claim gluten sensitivity should probably just go back to eating gluten because clearly eating gluten-free hasn’t “shown to be of any benefit.”
Aside from my own personal experience which I’ve briefly shared above, there are so many other stories out there from folks just like me who’ve had their lives turned upside down without a celiac diagnosis. Please read the 90+ stories by clicking HERE of folks who wanted to share their stories with Dr. Majd, Scientific American and anyone else out there who doubts that eating gluten without a celiac diagnosis serves any purpose. I originally intended to post only a few of these stories, but I was overwhelmed by the massive deluge of responses and figured it would be easier for everyone to simply read the posts there as well as any others as they are added.
There are also pretty big names out there that would completely disagree with what Dr. Majd has said such as…
National Foundation for Celiac Awareness – About Non-Celiac Gluten Sensitivity
Mark Hyman, MD – Gluten: What You Don’t Know Might Kill You
Dr. Alessio Fasano – Dr. Fasano: Gluten Sensitivity Biomarker Likely Coming Soon
Amy Myers, MD – How to Test for Gluten Sensitivity and Celiac Disease
Peter Green, MD – Non-Celiac Gluten Sensitivity: Gastrointestinal Hip or Hype?
And here’s a study that demonstrates that gluten does cause issues for those without Celiac.
Perhaps it’s easier for people (and some medical professionals) to just say “You’ve got IBS” (the catch-all phrase for digestive issues these days) because there’s some medication out there to prescribe while none exists (yet) for non-celiac gluten sensitivity or Celiac Disease. But because the mechanism behind gluten sensitivity isn’t fully understood doesn’t mean the issue doesn’t exist.
I’ll Keep my Gluten-Free Diet, Thank You Very Much
It’s already difficult enough to navigate the massive amount of information out there on the web, in books and on TV about living gluten-free. If I didn’t know better, I might very well have listened to this report and reconsidered my gluten-free lifestyle.
But the thing is… I never took cues from celebrities.
I never took any pointers from the gluten-free food product fad (which I work hard to expose).
And yet, I’m still healthy. In fact, I’m healthier now than I’ve ever been and going gluten-free ended up being the best thing that ever happened to me. So before I take suggestions from someone who tells me that my health issue isn’t real when I know darn well it is, I’ve got to consider the sick life I left behind.
A Word to Our Gluten-Free Community
I recognize that this issue isn’t about Celiac Disease directly and, though I certainly spend quite a lot of time sharing info critical to those with Celiac, I ask that those with Celiac return the favor. I also ask those who follow a Paleo or Primal diet also lend a hand. Remember that we are all one community who lives this lifestyle because it personally helps each of us.
No matter what you’re official diagnosis (be it celiac, gluten sensitivity, or maybe thyroid disease or some other autoimmune condition), we are all in the same boat. Our specific circumstances might vary, but our general commitment to gluten-free living is what binds us together.
So when articles like the one in Scientific American are published, as a community we need to stand tall and say NO. We won’t stand for this type of mis-information to be spread so that those out there who might be at the beginning of their journey, those considering this lifestyle for the betterment of their health, or those who struggle to stay gluten-free won’t be tempted to stop simply because of an article like this.
If Scientific American wanted to write a piece that fairly examined the other side of the issue, we wouldn’t be having this conversation. But they and many others tend to get caught up in sexy hype.
If you want to write Scientific American Magazine to complain (as I already have), email them directly at: firstname.lastname@example.org
Share, like and tweet this article to get the message across that gluten sensitivity is more than just an internet myth.
Jen- tweet link not working. Great article!
YES!!! I couldn’t agree more. I too don’t carry the official diagnosis of Celiac and sometimes feel I have to lie that I’m more than gluten sensitive to be taken seriously. A gluten-free diet allowed me to stop taking Adderall XR for (mis)diagnosed ADHD, and the ended GI issues that run in my family. Just the difference in my pregnancies alone (1st pre-GF diet vs now) is a medical study in itself of how eating gluten-free can significantly improve the quality of someone’s life & health. It could not be more real. Thank you for speaking out!
Getting off of my ADHD meds was probably the best and most surprising side-effect of giving up gluten (and actually all grains to a large degree). It is something I try to share (as inobtrusively and non-accusatorily as possible) with my friends who have children getting diagnosed with ADHD. Sure, losing weight and getting rid of IBS symptoms and skin issues has been fantastic, but Adderall was the only medication I was taking regularly. I could barely function without it and now I couldn’t imagine ever taking it again. And this is coming from someone working on a PhD – two years ago I would never have thought I could make it through the program without my meds, pizza, and cigarettes. It’s a whole new world!
Is this hard to do you all?
I LOVED reading this article.
My daughter, age 16 has been sick since she was 9 years old. No doctors could figure it out..this child has been through more tests and has seen more doctors and has been put on more meds than myself who is 46. Feb 7th was the day that turned OUR lives around. She is allergic to Gluten, dairy, eggs and bananas. It has been a long and winding road for the past 7 years. FINALLY a DOCTOR who figured it all out…not like the rest of the TOP DOCS who simply told me it was IBS or better yet…”in her head” and “stress”. Love reading all of your info that comes my way. THANK YOU
I’ve recently learned through allergy testing that I’m allergic to wheat, gluten, barley, rye, spelt, eggs, dairy, pineapple among other things. I also have an intolerance to bananas and kiwis (they make my tummy sick).
I’m really interested in learning what you offer your daughter for food. I’m trying so hard to come up with recipes that work for me, but I feel so limited in my options. I hope you might find some time to share ideas with me.
Nancy, have you checked out the recipes here on Gluten Free School? You’ll find that most will meet your needs 🙂
Those of us in the science community call Scientific American “Science Light”. It is a NON-peer reviewed MAGAZINE and not a reputable journal. There is no control over content that is published. Just ridiculous. I don’t trust their reporting. Let’s hope we gluten sensitive people can shame Scientific American and this fake Dr. into admitting their ignorance.
I went gluten free in May of this year because I was hospitalized with chest pain and shortness of breathe! Come to find out I had severe gastritis and a yeast infection in my esophagus; had never heard of such. I remembered I was diagnosed years ago with celiac disease but never stop eating glutens; so I decided I better change my diet. Went to my grastro doctor and he told me I did not have celiac disease because I was Afro American and we do not get celiac disease; he said people of Irish decent is the only one to get it!! Are you kidding me??? I told him I don’t know about that but I know I am allergic to certain foods!! He told me I had IBS and wanted to put me on some meds; I did not take them!! I told him I did not have IBS; IBS does not cause you to have heart palpitations and shortness of breathe after you eat!! His responds was, “Oh yeah!!” I asked him to send me to a Nutritionist but he refuse!! I need help eating properly because I am not getting enough protein; I cannot eat meat because my body does not digest it-it get stuck in my throat and chest!! The only things I really am eating is fresh fruit, veggies, and French fries and I am tied of these!! Now, I have developed a sensitivity to milk and soy which had made it more difficult for me to eat since soy is in EVERYTHING!!! This is very frustrating to find something I can eat and like!!! I have always been a picky eater and now it is more difficult to eat!!! But the good side of all of this is I have lost weight and feel 100% better in my body; I am not tired and sluggish after I eat or feel bloated (unless I eat meat and it does not digest-thinking about cutting meat out all together-can’t stand the sight of it at times-it makes me gag-don’t understand it:). Thank you so much Jennifer for helping us learn and know more about these poisons!! And thank you for speaking the truth about glutens!! I reposted this blog on Facebook, twitter and Pinterest!! God bless and keep doing what you doing!!!
Do yourself a favor, and log onto Dr. Mark Hyman’s website. His articles and blogs will guide you, so you can help yourself. Try eating fish, lean chicken, fresh vegetables, beans, rice, other non-gluten grains like quinoa…easy to make and quick, buckwheat, fruit, nuts, coconut milk, protein smoothies made with whey powder, or rice protein, possibly you can tolerate eggs. In general you might want to stay away from dairy for awhile. There are lab tests that can identify what you are allergic to permanently, and what things, need to be rotated. These sensitivities change over time, as your gut becomes less inflamed and leaky, and with a better barrier, your gut immune tissue will not make antibodies against the big food molecules from the other stuff that leaks out. Also read Mark’s book, the UltraMind Solution.
Hi Dr. Krahl, as you can see if the article, I reference Dr. Hyman’s work. I’ve read the UltraMind Solution and did find it to be a great book. 🙂
Until you’ve felt the pain that accompanies gluten sensitivity, you can’t believe how much better you can feel by changing up your lifestyle. For me, it means no more arthritis symptoms, no more pain, no more excessive trips to the bathroom, no more gas and bloating and fewer migraines. My cholesterol numbers are better and I truly haven’t felt this well since I was in my teens. We have all had to deal with the doubting Thomas’s and it is hard to be polite and explain calmly. I just bombard people with articles I find from good sources. It has helped to get some people to see the light.
I had twenty-five years of undiagnosed neurological issues caused by gluten. A new neurologist decided to put me on an elimination diet to see if I had a trigger for the neuro issues which included vertigo, ataxia (to the point of using a cane during episodes), double vision, heart racing episodes, extreme fatigue (2 hr naps daily), brain fog and basilar migraines. The trigger was gluten. No gluten = no episodes. Gluten = symptoms beginning within 30 minutes of ingestion. Blood work did not show celiac. I even had the DNA work done and found I carry only a “partial gene” and am at very low risk for celiac. But you’d better believe I have gluten sensitivity. Oh, yes, it is real. I am fortunate to have a neurologist, a family doctor AND a gastroenterologist who are educated, on board and supportive. Perhaps I can get them to send a little note to Scientific American. 🙂 You go, girl. We stand united.
Frankly gluten is only one of the reasons to avoid wheat. It’s lectins are equally destructive. Its carbohydrate, amylopectin A, is one of the most efficiently digestible carbs available, leading to high blood sugar, insulin resistance, weight gain, and glycation. There is not a good reason to eat wheat period – diagnosis or not. I dropped the wheat and dropped 55lbs in under 5 months. The weight just went away. And there are about a dozen other health benefits I reaped. I will never touch the stuff again. I followed Wheat Belly.
Word. I had the exact same problems, but they were exacerbated by untreated sleep apnea, so I suffered needleesly literally for decades. Now 40 (15 months wheat-free and sleep apnea treated), I feel better than I have in ages.
The haters don’t speak for us. Our experiences do.
I love it, Steve! You’re totally right… the haters don’t speak for us. Thanks for sharing your experience here and adding your voice to the conversation. It’s amazing how long some of us suffer needlessly because we really didn’t know what to look for in the first place. I’m so glad that you’re feeling great!
I have to say I can understand the upset about people thinking going gluten free is a fad. Really if it was just a fad would i really give up pasta, italian bread , New york bagels and pizza. Really I am an italian and I would never give it up unless there was a good reason. I used to get horrible pains and bloating and once i went gluten free alot of that has gone away. I still have some issues and yes i was told I have IBS. i don’t feel like a million dollars but at least i feel better and believe me it was a struggle to go gluten free in my family. And as far as i am concerned it is not a diet , even though i feel better I have not lost any weight and know others that have not . If this was a fad I would think there would be a point to it like losing weight. The problem is that this condition has been around for a long time and no one really knew what it was , It is new and when people hear something for the first time they don’t always believe it. I am also very very sensitive to medication and I remember I had a dr that told me my symptons were all in my head after i told her the medication I was making me sick. I understand we all have opinions but come on don’t knock something or criticize when you don’t know the full details. People have no right to put people down for the choices they make or what they do. Every person has a different make up and we all have issues , it seems that the people who understand our issues are those that have them as well. So if you haven’t walked in their shoes then don’t criticize their path .
I totally understand Chris! I’m also Italian and it was hard to give up all the pasta, bread and pizza! I don’t think that weight loss should be a main concern in this because it’s really not about losing weight. It’s about becoming healthy based upon what’s unique to your body, as you so rightly put. I agree that it is really difficult for people who’ve not walked in our shoes to understand what we go through … I wanted people to know that it was not okay to simply make blanket statements without understanding the issue further and seeing that this does affect more people than just a handful of folks creating internet myths. I wanted to put faces to this story and I hope the message is heard loud and clear. Thank you for sharing your thoughts!
One of the benefits of going gluten free, or grain free, is eliminating the massive amounts of refined carbs in one’s diet. That will decrease sugar in the bloodstream and its consequences; insulin resistance, weight gain, and inflammation, plus brain fog. However, this ‘sensitivity’ is distinctly different than having actual Celiac Disease. Educate yourself and do not be deflected by opinionated, immunologists, gastroenterologists, GP’s, Internists etc. Pause, think, read and as Mark Hyman, M.D. would say; take back your health. Several years back I put it all together as none of my other healthcare providers were. I had Hashimotos Hypothyroidism, unexplained, had had anemia, and chronic skin ailments, like acne and eczema my whole life, miscarriage, gut issues, AND positive antibodies, but no reflex testing was done for a Celiac Panel. I tested + for HLA DQ2, and HLA DQ8, and was still basically derided by any med doctor I talked to, as not having celiac. So I treated myself. Enough said. Some people also are sensitive to deadly nightshades, dairy, soy, eggs: remember our foods have been kidnapped by Monsanto, and the proteins and genetics in them are vastly different from natural foods. Once your immune system has been unregulated by the leaky gut caused by untreated Celiac, your allergies to other foods and airborne particles may be huge.
Dr. Krahl, I have many food intolerances, in fact, they got worse after I got off of gluten in October of 2011! I had diarrhea daily for months until I realized that it was the gluten-free foods — other grains, corn, rice, etc. that were causing it. Also nightshades caused a rash that I’d had for years. Still trying to figure out all of my food intolerances and probably need to go on a food elimination diet.
A gluten free diet has cured me of depression, anxiety, urinary pressure and frequency, chronic diarrhea, bloating, and chronic fatigue. None of which I have to take meds for anymore! I think I’ll stay gluten-free! Thanks!
Good for you Aana!!! Thanks for sharing your experience!
In 2007, I became severely sick with the 1st peanut butter outbreak that had infected Walmart brand pb. I was sick for about 6 months. 5 months into it, they did a recall. We had bought 2 and after my mom, sister and I got sick we just said no more pb. So we threw it out. But we still had the other unopened bottle. Luckily because that’s what we found out either salmonella or E. coli. don’t remember (I get confused with them) but drs said oh that’ll be gone out of your system in 30 days. I’m like 6 months now into this stomach pains, ibs, I ended up having bronchitis from allergies and that turned into walking pneumonia. That’s when I finally went to the dr again. Got tired of the I don’t knows. There is a point to my rambling I promise. Well I ended up taking blood tests and the IgE test came back I was allergic to wheat, potato, tomato, corn, soy, orange, peanut, and coffee. Also had sensitivity to gluten. Found out my new dr wanted to help. Then his first words after that were “I’ve always wanted a patient like you, now that I have you. I don’t know what to do with you.” He told me I had to quit eating all these foods and I might feel better. Well I quit cold turkey. First 2 days were horrible my body was addicted to these foods. I was on this new diet for a year. Within 4 months I had lost 60lbs, had much better complexion, felt so much better, slept better, had way less fatigue. I could actually sleep at night wake well rested and be up for hours. I had energy. I just felt great. Well then I came slammed back down to reality when I found out I couldn’t afford $35 for 4 lbs of flour(s) no more and rice noodles. I gave up worst mistake ever after 4 years. I regret it every day. I’m back to my plus 60lbs, tired all the time, depressed, sleepy never feel like I’ve slept. My point is without some useless celeb telling me this diet is great. I found out on my own due to almost dying (came close with that walking pneumonia) that gluten sensitivity and celiac disease and food intolerances are real. And I hope that one day Drs will take it seriously as not some celeb fad diet because its not. Its a life altering reality to why people are truly sick. And no pharmaceutical company is going to say “here take our IBS pill thats all you’ll need.” Nope didn’t work. Sorry so long.
Great article. Can you be sure that giving up gluten caused the transformation? Did you give up anything else (dairy, sugar, etc)? Or start exercising? Thanks!
Gluten was absolutely a big part because I was gluten-free for about 30 days when I had already started to feel incredibly better and had lost about 10 lbs. I then found out that I was also intolerant to eggs and dairy and then took them out as well. I did not change my fitness routine at all. So I do think that removing eggs and dairy helped, but the changes were already noticeable from just gluten.
Bunch of bs. I fought drs over and over for a year with them telling me I had an eating disorder. Finally I called an ambulance to get to the er and refused to leave until they did whatever blood work they could to figure out what was wrong. I went from a healthy 120 pounds to a disgusting 84 pounds before they listened. That was 2004. It’s taken me til just a few months ago to finally put on weight and look healthy again. Gluten sensitivity is real. Just as real as us that have been diagnosed with celiac sprue. I am so tired of having to defend my “diet”. This is not a fad nor a healthy way to lose weight. It is a disease that if not followed to the max can and will kill you.
Thanks for sharing this! I am new to this gluten free lifestyle due to my sensitivity and sometimes feel like people are rolling their eyes at me when I tell them. I also had most of the issues you listed above and have found how much better I feel not eating these foods. The rash I suffer from has slowly been going away since staying away from gluten. Due to a lack of support though I sometimes think I might be crazy and it is all in my head, but I always have the proof of my body healing that no “article” can take away. Thanks again for sharing! I needed this reminder!
thanks! I emailed them at scientific american. Gluten sensitivity is real! My 4x/week diarrhea, bloating, brain fog, rashes and lifetime of gas have disappeared. My immune system has improved, parasites are gone and so is the pelvic pain.
27 yrs ago I gave birth to my son near the end of pregnancy I developed edema and it got worse over the years, then came, osteoarthritus, diarrhea the majority of the time, bloating, brain fog, dermitius, elevated blood pressure,
unending hunger, exhausted all the time, allergies the list of things wrong with me felt unending.
I have been to about 5 doctors over the years for these problems.I was so swollen one physician thought I was having congestive heart failure because of the edema. I have been fed HTZ, ACCUPRIL and LASIX for all these years which did little to nothing! No doctor told me I was gluten intolerant. I went on a fruit and vegetable diet for 3 weeks and I then one night I began to pee…..11 lbs of fluid left my body in 14 hours….I researched myself what had changed in my life to cause this msuch a dramatic change and found gluten intolerance I sat down and cried like a baby reading the articles descibing the symptoms was like reading about my life. During the next 3 weeks I lost a total of 26 lbs of fluid…..ALL OF IT WENT AWAY…every single health problem I had is gone! My blood pressure is now 117/72.
I have been gluten free for 18 months with no other changes in my life I have lost a total of 57 lbs.
I will never eat gluten again and I rejoice that I was lucky enough to find out what was ruining my life GLUTEN!
Wow…what a powerful story! Thank you so much for sharing your journey and I’m so happy for you that you finally discovered the route of your issues! It underscores the tremendous power of food 🙂
It’s great to see this article and all the comments. I lost over 60 pounds on Mark Hyman’s elimination diet and resolved depression, anxiety, insomnia, asthma (I haven’t used a puffer in 7 years), allergies, skin issues, canker sores in my mouth and nose, all the digestive issues associated with NCGS and chronic body pain (I could barely get up an down the stairs in 2007). Turns out I’m sensitive to gluten, dairy, soy, eggs, nightshades, flax seed, chocolate, fermented foods including vinegars and citrus. Quite the list. BTW…all testing says I’m okay with all of these foods and am negative for celiac including the gene test. I only figured this all out by experimenting and paying close attention to my body. My youngest child was diagnosed with autism at 2-1/2 yrs in 2008. I put him on the same elimination diet and changed the course of his life. He is now considered recovered and was mainstreamed for elementary school two years ago with no support and no more autistic traits. I’m a believer in the lifestyle. Thanks for speaking out about it.
You are right with your info on your page. I am a doctor myself and sad to say that there are few docs to take the time to look into gluten sensitivity. I have all same symptoms as you. Told to keep eating gluten after stopping improved things (gasto doc told me). i have had return of all my symptoms. I have been so sick it’s not even funny. As of yesterday stopping gluten again. It is NOT in your head. Eventually the science will be there. Always listen to your body and if your doc doesn’t listen to you then find another one. You look so much better in the second photo and sure you feel better also.
Great article! Very well explained. I hate this lack of information around gluten sensitivity and celiac… We need to make people aware that this is something real that makes us ill!!! Only last month I got ill because they didn’t take me seriously in a restaurant when I said I couldn’t eat gluten… How are they supposed to take us seriously if doctors are the first ones that keep saying that is “all in our head” or that we are just following the latest trend on celebrity diet?!
I am on Disablitiy Assistance for undiagnosed gluten sensitivity. I has homeless and spent many nights in the hospital to get off the street. A doctor put my on Clopixal injection for crystal meth addiction. The sensitivity was hell and a doctor took me off. I went gluten free and for 9 months I got better. But while waiting I went back to cyrstal meth no knowing there was gluten in it. I was put back on Clopixal and it cured me of my crystal meth addiction. I moved, my new doctor keeps me on Clopixal even though I am sensitive to it. I have all the classic symptoms. The does not belive in sensitivity, gluten sensitivity, or that I am having any problems and that I am atually feeling better than before. How Stupid and dangerous. I need help getting off this medication.