I rarely discuss personal stories of when I was diagnosed, due to the belief that I should choose to remember the happier times in my life, rather than dwell on the depressing incidents that have happened to me. Today is a rare exception due to an article by Meghan Casserly posted on Forbes. This is a subject that is very near and dear to my heart and I thought it would be fitting to speak out on this topic.
Dear Meghan Casserly,
Words cannot express how deeply disappointed and depressed I became after reading this article you wrote for the Forbes blog. I was diagnosed with celiac disease 9 years ago, before the “gluten-free boom” occurred, when little educational information and food alternatives were available to patients. I did not live in an area with access to experts on celiac disease and was left to fend for myself in terms of patient education.
At the time of my diagnosis I was very ill, I had lost over 60 pounds in an eight month period and would barely eat because every time I ate a meal, the pain in my intestines was unbearable. I went from being a healthy individual who loved trying new foods and eating out every chance I could get, to someone who was under 100 pounds, had no energy, with severe intestinal pain, and would drink large amounts of water to try and help subside my symptoms of a condition I had no clue that existed.
Oh, and I forgot to mention I was 17 and a sophomore in high school.
Sound familiar? Because it should. I was living all of the symptoms of the girls mentioned in your article, and I did not appreciate, or take kindly to being accused of being an anorexic by both my peers or my instructors in high school. If my parents had not believed me, I could have very easily been treated for an “eating disorder”, however I was lucky and was eventually diagnosed.
Attaining a diagnosis did not stop the harassment and accusations of an eating disorder, in fact it just made it worse. I distinctly remember one Agriculture Education teacher telling me that I just made up celiac disease to cover up the fact I did not eat because there was no way anything could be wrong with me. This and many other incidents caused me to seep into a deep depression which caused a range of irrational thoughts of suicide, to a lack of self confidence throughout the remainder of my high school experience that I tried to cover up and hide from my peers, because the weaker I appeared to others, the more I was harassed or talked about behind my back.
In the comment section you state:
@Jules: My intention is not at all to draw attention away from those who truly do suffer from celiac disease or gluten intolerance, only to shed light–and raise eyebrows–on another potentially dangerous and possibly overlooked possibility.
If this had actually been your intention, a better way of stating this in your article would be to encourage young girls who are having a rough time adjusting to the gluten-free diet to see dietitians for appropriate patient education and encouragement of the transition process to a gluten-free diet.
Instead you have chosen to make life a living nightmare for certain young girls by making the accusation that young women who follow the gluten-free diet that fit the descriptors you provided are highly likely to be lying and just have an eating disorder, even if the parents state they have been diagnosed. Congratulations, you have done a fantastic job at this.
My only hope is that if you actually read this letter, or the hundreds of others that will be pouring in your inbox, that you make changes to the tone and add additional information on how important patient education of young teen girls is to your article. Yes, some young girls do use food intolerance as a cover up for eating disorders. However, by encouraging readers to seek out help from a dietitian, they can make a professional assessment as to whether or not the young girl has a problem, rather than just make a blanket argument of accusation that you have done in your article.
As for your statement,
What’s left to eat?
Next to nothing. And for many, that’s exactly the point.
I will let the rest of the gluten-free world correct you on this, because trust me, they will.
Sincerely,
Sara
Comments
20 responses to “An Open Letter to Meghan Casserly”
Sara, I do hope your poignant story makes its way to this ill-informed journalist, and even moreso, to others who have been mistakenly told by the media that gluten-free is just a fad like low-carb. Your experiences are such vivid examples of why those of us who MUST eat gluten-free must persevere and share our very real needs with others where and however we can.
It was amazing meeting with the Deputy Commissioner of the FDA at the 1in133 event, and hearing that even at the FDA, they just didn’t realize what a serious issue gluten-free is for so many. Our event, and showing our plight in such a personal way, sunk in and has brought GF Food Labeling back to their agenda.
Just as we did with the FDA, telling our personal stories teaches and illuminates others on what life is like to live gluten-free of necessity to those who either lack the information or the interest in understanding how we live.
Thank you for opening yourself up and sharing your story. It will make a difference.
Hope you can go back soon to focusing on the happier times!
All the best to you,
~jules
1in133.org
blog.JulesGlutenFree.com
I love your response. You covered it all. Oh and as for the fact I can no longer eat anything, well I guess all of the food in my house is plastic or just photos. And all the recipes on my blog are not real.
This post is worth sharing for sure.
I saw the Forbes article earlier and was at a loss for words – I’m so glad to see that you and a few others have spoken out so eloquently, and so promptly.
I am commenting anonymously here because there is a lot of stigma associated with eating disorders in any context. I would like to add yet another perspective that Meghan Casserly did not explore:
I suffered from severe anorexia when I was in high school. I also have celiac disease…But I didn’t get that diagnosis until years later, and after going gluten-free I realized that when the eating disorder had caused me to restrict food, I had been (indirectly) avoiding gluten-containing foods. The restrictive habits were extreme and out of my control (as is the case for anyone suffering from eating disorders) and of course resulted in me being very unhealthy for reasons other than the undiagnosed celiac disease. My point, though, is that even if someone DOES suffer from anorexia, it doesn’t mean they DON’T have celiac disease – it may just mean they feel horrible every time they eat, which makes it very easy to fall into a pattern of eating less and less!
I didn’t realize until after I went gluten-free that it wasn’t normal to feel awful every time I ate, and that the belly pain after every meal was NOT due to psychological “issues” with food and eating. Maybe these girls who are avoiding food actually have a physical reaction driving them to do so, even if they are not consciously aware of the connection. I think we need to do the inverse of what Meghan Casserly suggests: rather than suspecting that girls who say they are gluten-intolerant are anorexic, I think we need to assess whether girls who are avoiding food may be gluten-intolerant and not know it.
I am not suggesting that is the situation behind all people with anorexia. I would be very surprised, though, if my situation was unique.
Hi Anonymous,
I completely understand the point you are trying to make and I hope it came across in my post as well where I emphasized that ALL young girls suspected to have an eating disorder or being gluten-free should work with a dietitian to help each specific situation. It frustrates me that these two separate, yet equally problematic issues for young girls are viewed that it must be one OR the other. I honestly believe if I had gone another 6 months without a diagnosis I would have developed anorexia due to all the pain that I was in and the avoidance eating habits I was already developing on my diagnosis of celiac. Since I have never lived personally with ana, I did not want to speak out for those who do, thank you so much for your input! It is greatly appreciated and should be heard by the public!
Thank you for saying what you said, Anonymous. This is exactly what I’ve been going through. Anorexia is not just the intentional restriction of food. It also includes the UNintentional restriction of food, which I have been doing for years. I know it’s not because I’m afraid of gaining weight, because my current weight is disturbingly low (and putting on a few pounds would be excellent!). I’m not comfortable being as skinny as I am. What I’m just realizing is that, for years, I’ve been avoiding eating because eating makes me feel ill. I tried gluten-free and felt AMAZING (read: normal)! My appetite improved, my head lost its fogginess, my belly was no longer nauseated at the thought of eating, and I looked forward to meals. I had to go back on gluten for the blood tests, but now that I’ve had my blood draw, I just can’t wait to get off the gluten again. I think that people need to understand that even when the brain doesn’t “know” what’s going on, the body tries to protect itself from that which makes it ill. If teens are “using” gluten sensitivity to allow an anorexic lifestyle, then it’s only because society has such a dim view of gluten issues. A GF diet is NOT nutritionally restrictive, the difficulty lies in the fact that gluten is in things that have no business containing gluten. If people can learn how to cook using real ingredients instead of pre-packaged food *stuff*, then GF is in no way challenging. Well, except for the fact that things you should be able to eat, like cornmeal, are so frequently processed in mills that also process glutenous grains. That’s frustrating! Anyway, the naturally GF foods like fruits and veggies, meats and other grains, beans, eggs, cheese (the list goes on and on!) are delicious AND nutritionally complete. If we can shift the public’s view that GF is “restrictive”, then we will no longer even consider the possibility that anybody is ever using GF to disguise an eating disorder.
Sara, quite simply, you said it beautifully. Thank you for sharing your story and your fight in this post.
All I have to say is THANK YOU !!!!! Your words were well put .Again Thank you for your response to Meghan Casserly. I have a 14 year old who has adjutsed to her GF (not diet) way of life very well, but it is so hard for people to understand this is not by choice it HAS to be this way. This is medication for her celiac disease !!!
Even the title of the Forbes post is inflammatory! And the author’s comments on Forbes have me wanting to reach out and slap the laptop.
I don’t really have anything more to say here other than YOU GO GIRL!
Wow you write amazing well. You put into word the things I could only think. Thank you so much. 🙂 hugs. From one celiac to another!!!
Thank you, Sara, for sharing that with us. While stories like this are painful to tell, they need to be heard.
I have been sort of sideways accused of anorexia before. People will see me go a many hours of a day without eating, and assume it’s because I’m trying to lose weight, especially when people see the rapid weight loss I had last year due to my divorce (and I’m not even skinny).
But I’m not choosing to go hungry. I don’t eat if I don’t feel SAFE with the food choices offered me. Being hungry for a few hours is much better than being sick for days, because the food was not as gluten-free as someone assumed it to be. And when I return home, to my safe haven, I eat a nice, nutritious meal and some rockin’ good gluten-free cake (for good measure).
Maybe what this author needs is to spend a day at my house. All of my friends know where the good food comes from. It’s here, from the gluten-free kitchen. Nothing left to eat? Bah! But when we feel like there is nothing we can eat then we don’t. Not because we want to starve ourselves, but because we want to PROTECT our bodies.
Because we care about ourselves.
Sara
Your response to Meghan Casserly’s article is clear, precise and factual – all factors that were lacking in Casserly’s inane diatribe.
I spent years in agony. I’ve been gluten-free, dairy-free and free from over twenty allergen foods for a year now. Prior to my results I was already tapering off of processed foods and sugar, so in many ways, my new lifestyle was a strong support for eating clean and healthy.
Two events of cross contamination left me sick for days, so I am very wary of eating anywhere that I don’t know exactly what is in my food or how carefully it was prepared. Even checking labels of lip colors, shampoos, soaps, and other non-edible products for gluten is automatic now and it is vital to my health.
I had to laugh at Casserly’s statement ” What’s left to eat ? Next to nothing…”
That “next to nothing” is what has saved me. Beautiful fruits and vegetables, cage free eggs, grass-fed meats, brown rice, lentils, quinoa, etc. – so many choices, even an occasional gluten-free beer.
It’s not a fad for us, it’s not a diet, it wasn’t even a choice.
BravoOOOO….Linda,Sara, and others who are celiac and fighting to survive.
I always had to eat healthy and that meant never alot of meats,breads,hormones,
processed foods,additives,junk foods,prepackaged, preserved foods or foodie fads. I always tried experimenting and eating foods preparations that were healthier from other countries. Amish cooking & foods were always safe for me so I always tried to stick to eating local foods. I was always underweight (85 lbs @ 30 y/o), tho even at birth I was tiny (1 lb 7 ozs) and my Mom had all preemies (7) all under 3 lbs. Looking back I never saw my Mom eat a meal…enjoy foods she baked, eat cake or breads. In researching my family history, I have three first born female cousins who are Celiacs on my Moms side. Just recently,things started falling into place. I felt like my body was revolting against everything I fed it. The more natural and healthier I ate the better I felt. I was gaining weight incredibly fast,my whole body swelled up and started bleeding internally…my intestines,bladder,kidneys,tongue,throat
…all screaming for help. When my family physician threw his hands up and said I haven’t got a clue, I knew it was time for me to forget conventional medicine and go homeopathic. My visits to the OBGYN,Urologist,Gastroenterologist and Chiropractors docs confirmed it was not menopause, but something else attacking my system. Going gluten free saved my life…thank god it is healing now and my new mission in life is to help others afflicted with this illness. We all need to stop being nieve about this…educate ourselves and others, as well as our families and friends, start campaigning so our children are healthier more productive adults. We need to remember this is not a fad or new diet… it has been around for ages . We finally have the knowledge due to Dr SidneyHaas, his son Dr Merrill Haas (Specific Carbohydrate Diet) and writer/researcher Eileen Gotshall “Breaking Vicious Cycle”… thankful to many others pioneering their way to victory. Maybe…we need to rethink what we are teaching our sons since males are also affected. Love this sisterhood-kudos & hugs to all…keep smiling, stay positive, lets stay on track one step at a time…educate & speak out including the medical profession & government!!! We are all guilty of ignorance to some degree…lets stop it in its tracks!!! Unite and be diligent! Heal!
As a skinny woman, I have been continuously ‘suspected’ of an eating disorder for many reasons, so having Celiac added to the list is something I’m already skilled at maneuvering around. Eating healthy in general is frowned upon in this society, especially if one is thin; if, as a thin woman, I actually care what I put in my body, then I MUST be anorexic (the fact that hey, maybe she’s thin BECAUSE she cares about what she puts in her body never occurs to people for some reason). My only problem with going gluten-free was having to work meat back into my diet because personally I could not stay healthy without that while trying to avoid gluten, and I also discovered I had less digestive problems getting off dairy as well. To have some writer callously imply that my dietary needs should set off ‘warning bells’ to everyone around me that I actually have an eating disorder, is really just a new verse set to the same old tune, the tune of: a woman who does something not overwhelmingly supported by the (male-dominated) medical establishment, there must be something wrong with it. Notice, after all, that she is not concerned with MEN who don’t eat gluten in her article!
I wonder what the author of this forbes article would be saying about us overweight celiac’s ? Last article I read from Dr. Green is that the medical field thinks that many of us that are overweight when DXed is because our bodies are starving for nurtients and are eating everything in sight. I did not have the pain or the bid D when DXed but I did have the bloating, the stress, the anger, the depression. So was I overweight because I was depressed and just ate to feel better? Hmmmm? guess that postive bisopsy was wrong!! Wonder what she would say about this?
Sara,
Excellent letter!!! Thank you for sharing such a personal part of your life, your story. I know how hard it is to be a teen girl with people scrutinizing every move you make. You have clearly grown into a strong, well-spoken young woman.
I hope that Meghan Casserly & Forbes takes notice.
Kim (@gfreeislife)
Only one of the many reasons I love you dear Sara.
GREAT job on this letter! Thank you for writing it!
I can’t tell you, in this time of craziness and insecurity, what a gift this was. I’ve been diagnosed for 2 years, and I’m still startled by the ignorance out there. My nephew deals with gluten intolerance, I deal w/ celiac… at 7 he is actually getting muscle and concentrating on— “next to nothing”. And every day, those who saw me struggle for 26 years with illnesses, surgeries and misdiagnosises stop me and say “You have color in your cheeks”. Sure, I’m still “too skinny”- next to nothing *cough* will do that to you. Obviously the Forbes contributer has never seen the beauty of GF cooking and baking. Shame. I think someone should send her treats…and then say “That’s next to nothing, you know” when she digs in! 🙂
Hi Sara,
Thank you for writing this letter. I also was always viewed as having an eating disorder in school and I was also harassed by students AND teachers alike for being weak and tired almost all the time. The sad thing is that I was already diagnosed with Celiacs disease in 1983, but my parents were told to reintroduce gluten after 2 or 3 years of GF. Back then it was still believed that Celiac-Sprue was due to an underdeveloped gut in some children and that you would kind of grow out of it. Luckily this changed towards the end of the 90s and I was finally re-diagnosed and followed a gluten free lifestyle again. I gained so much weight going GF, I was finally normal and healthy. I think this is something those following a GF fad, instead of really understanding the necessity of a GF lifestyle miss. True Celiacs or gluten insensitive individuals do not try to loose weight but instead gain it, and/or keep it on by going GF. Just recently I got gluten-poisoning again by a waiter/chef/restaurant not taking my needs seriously because of this horrid misinformation that GF is a fad for many instead of a real necessity. Thanks for addressing Meghan Casserlys in this letterin response to her uninformed article, I hope she reads it. I was not able to login to Forbes to post my comment to her directly. Keep safe
Hi Linda, Thank you for sharing your story. Please remember, though, that 50% of Celiacs are overweight or obese at the time of diagnosis. We don’t want to exclude them. But, yes, there is such a problem with people using the diet as a fad and hurting us in the process.”