Marissa Carter

Gluten Free Soapbox: We Are Not Crazy!

by Marissa Carter on November 29th, 2010


This week’s gluten free soapbox comes from the personal archives. I’m absolutely certain that I’m not the only one who has encountered this, but it doesn’t seem to get talked about much…

Often times, it seems that people who are on strict gluten free diets get viewed as high maintenance, or picky. The constant need to check and double check ingredients tends to bother some people. The reports of contamination and reactions go unbelieved, and people give that knowing look when “gluten free” is mentioned.

I even had a doctor say that the worst that could happen with Celiac Disease is diarrhea, so not to worry too much. He told my daughter that the list of symptoms I had given him looked “made up” and suggested I was over reacting. (Really, even if that were true, should I intentionally give my daughter diarrhea?)

People like this make life so hard for the rest of us! The members of the gluten free elite deserve the same respect (at least the benefit of the doubt) as the rest of the population! Just because the food is different does not mean we are all crazy.

What really cinches it is the fact that not all special diets get these kinds of reactions. When was the last time you saw someone react sarcastically to a peanut allergy? Why is it that gluten intolerance is so hard to believe in? Let’s just lay this to rest, shall we?

I assure you, we did not invent the gluten free diet for the attention. We do not go to CSA meetings to study acting in order to perfect the look of fear we show when handed a cookie. I have never met a member of the gluten free elite who enjoys having to scrutinize every bite of food, and be the odd one out in social situations. We are not crazy!

Celiac disease and Gluten Intolerance are very real conditions with very real consequences. Not only does research report the increased likelihood of cancer and many many bowel issues, but more and more research is finding links from Celiac Disease to neurological disorders and mental symptoms.

This seems logical to me. If the human body is not getting the nutrients it needs from food because something is blocking the absorption, then the body will not work properly. For years we have been hearing how stress (another “imaginary” condition) affects the entire body. How an infection in a tooth can cause numbing of the fingers. Is it so hard to believe that continually consuming a substance that is reacting badly with your body could be a bad thing all around?

For all the non-believers out there, I say, “Shame on you!” Seriously, take a look around and get a clue. For every member of the gluten free elite who has ever gotten “that look” or been told that they were just an over protective parent, I say this:

You are not crazy! I applaud your efforts to protect yourself and your children against all odds. It takes courage and determination to fight the gluten free fight every day and you deserve a medal.

The voice from my childhood that says, “But, you don’t have to take my word for it…” offers up these links to professionals who feel the same way.

And now the other voice from my childhood says, “Ha! So there!”

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Author Information: Marissa Carter, Kansas City
Marissa Carter
Website: www.lostscribe.webs.com
Gluten Free Product Reviews: www.glutenfreeproductreviews.blogspot.com
Kansas City Gluten-Free Food Examiner: http://www.examiner.com/x-19097-Kansas-City-GlutenFree-Food-Examiner
Blog: www.marissacarter.blogspot.com
Suite 101: www.suite101.com/profile.cfm/mmrcarter
Twitter: LostScribe
AIM: lostscribe79


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18 Responses to “Gluten Free Soapbox: We Are Not Crazy!”

  1. Wen says:

    I can so relate. I have a friend, who avoids my gluten talks. If I bring it up…there is silence. Really? I have some I can talk to about it and they get it. I have family members that get it, but don’t understand why I talk about it still. I figured it out, now just deal with it.

  2. Ann Trejo says:

    I love this article! Although my family is on board with my gf diet, there are a couple who don’t really understand it. “You’ve been eating gluten your whole life, what’s one more meal?” I just wish they would look Celiac up on the internet and see why I can’t eat “just one more”. I know what I’m talking about, they don’t, and I’m Not Crazy!

  3. Joan says:

    Crazy? Sadly it seems that some Celiacs suffer from neurological and mental illness. Lets be a little more sensitive to their feelings. Thanks

  4. Marissa says:

    Glenda – My heart goes out to you and your situation! You asked for a bit of advice, so here goes: I don’t have any kind of medical degree, but I don’t need one to know when I don’t feel good. I know that when I eat gluten it makes me very sick. If this is the case for you, then there is no shame in doing what is right for your body, right?

    As for friends who don’t agree, or think you are too high maintenance, maybe it is time for all of us to re-evaluate what a true friend is. A true friend will be with you through thick and thin, no matter how hard it may be at restaurants :)

    One other tidbit I can offer is this: Gluten free is what you eat, not what you are. I read that somewhere and it stuck. You are still the same person you have always been. If eating is stressful, do what some others on here have suggested and pack your own snacks when visiting others. Wash your hands often when playing with the grandkids and remember to take a moment to breath and enjoy life.

  5. Renee says:

    It is hard. I ate out 4 nights a week before being diagnosed, now I hardly ever go out to eat. I too have been contaminated even after I have taken every precaution, it is just safer to cook all of my own meals. Even when we go to someones house I bring my own food-always. I always carry a cooler in the trunk of my car which has some GF granola bars, salad dressing, wasabi and soy sauce (because I love sushi). There are many good GF frozen entrees on the market, I always have some on hand for those nights that I do not feel like cooking an entire meal.

    As far as your doctor and your friend who needs them. Surround yourself with people that care about your well being and want to see you healthy.

    It is hard not to be consumed by this disease. Try to read as much as you can on the subject, find a support group and continue to keep yourself healthy. Do what ever it takes.

  6. Glenda says:

    I know how this feels when some relatives continue to bring wheat-filled cookies, or say I am “weird” when I explain Celiac. Some are just plain sick of me reading about gluten containing medications every time I get a prescription or read every single one of the labels on everthing I buy at the grocery store. I have been diagnosed for two years (at age 60) and my Gastro Dr. once said “You are being too hard on yourself. You can eat foods you really enjoy (with gluten) once in a while.” I have not been back to him. I have been glutened at restaurants even when ordering from their gluten free menu and speaking to the manager! PF Chang’s is the only one I can really trust. I hate cooking but now must cook every meal I eat and it is so time consuming, but what else can I do? Celiac has become the center of my existance. I even had a best friend who decided not to include me in her life anymore because it is difficult to go out to eat with me. She was my friend for 16 years and she has hypoglycemia, allergies to smells, cleaning products, mold, and whatever. What a hypocrit. It is hard to relax and enjoy my grandchildren. Any advice?

  7. Renee says:

    This is a great article. I have read every book on Celiac disease and gluten intolerance since my diagnosis 6 months ago. One of the books said that when people go to medical school only 15 minutes is spent on Celiac Disease. It is no wonder that most doctor’s do not know much about it.

    You really have to take your health in your own hands. Especially when trying to find out what is wrong and then after to help you figure out this new lifestyle.

    I was over whelmed after my diagnosis I had no idea what Celiac disease was, I had decided to try the gluten free diet for one week. that was it, I was committing to it for one week. After day 4 I felt like a whole new person and swear I will never touch gluten again.

  8. Mark says:

    Yes Diane, that’s the down side. We’re going to turn into hermitts.
    Which is why I’m reading and writing on this web site.
    Fortunately my uncle understands.
    But when my aunt in another city finds out when I’ll go visit she will go bezerk.

    This gluten free business takes a lot more planning to go out.
    I have to bring a banana, or dried raisins, cheese, orange juice, in case my sugar goes down.
    I can’t just go to a burger place when I’m far away from home and just gobble a burger.

    And when you go to some gathering or funeral they only have sandwiches and at other events they just have donuts on plates.

    My doctor complained that I’m restricting my diet. I can’t believe it. But I feel better I said.

  9. Diane says:

    I applaud this article. I have turned down so many invites or ‘going out with a group’ for as someone said, ‘the eye rolling’ or incessant questions of ‘why not this or that’. Well written! Diane

  10. Mark says:

    When I saw my new doctor last week (who replaced the one I had who left the clinic) she thought I was nuts, for cutting out: high oxalate foods for my kidney stones, some goitergens that messed up my thyroid, and my no gluten diet.

    But she sure knows what pills to prescribe for thyroid problems.

    She never heard of high Oxalate foods (explained on this web site),
    she never heard of goitergens that affect the thyroid,
    I had to explain everything to her. I am not going back !!!
    It’s not my job to explain every little thing. She’s paid, I’m not!

    If we’re nuts, so are the billions of Asians who eat rice instead of bread-gluten.
    Why are they allowed to eat rice but we aren’t?

    I didn’t wait to be diagnosed. In September feeling on the brink of death all summer long and in bad health for years, I stopped eating bread and gluten foods.
    After a few weeks, I feel so much more energy and my muscles are growing bigger.
    Why is that such a threat to doctors?
    Oh… you can’t prescribe all these medications to someone who feels great.

  11. Valerie says:

    This article is fantastic and definately explains a lot. I used to have terrible migraine headaches, never got better…I would take a handful of pills in the am and then in the pm. Once I started going gluten free, I started feeling much better and after 3 months gluten free, I take NO medications now. I never thought all these medications I was taking even helped. All I thought was I was too drugged out and and in a fog. I guess I was lucky, only took me 6 months for the GI doctor to diagnose me.

    As I look back on it.. I have probably had a problem with gluten for the past 8 years, just found out I was celiac approx 1 year ago. I feel so much better. I had to completely give up ALL dairy including ice cream.. (in a food group by itself, but not anymore =( ) and fried foods too. The diet is hard at times, but totally worth it for me. No… we are not crazy.. but I feel most people with gluten issues were misdiagnosed for far too long.

  12. Mark says:

    To anyone who’s a teenager who finds out they have Celiac or Gluten sensitivity:

    DO NOT TAKE this as a TRAGEDY.
    You are so lucky to find out NOW while you are young.
    If you stick to your gluten free diet you will be spared so many complications, even cancer.

    Get down on your knees and thank God and your guardian angels that you found this out at the start of your life before this illness ruins your life !

    The BIG irony is that I remembered last week that when I was a teen taking Physics at summer school, the guy behind me in class whom I knew before but had lost track of said that he was taking the summer course because he had missed a lot of school because he had been sick and that he had just been diagnosed with Celiac. When he explained that he couldn’t eat bread, I felt in my head “Poor him… what a tragedy, he can’t eat bread”

    I had been in hospital for chronic diarea (spelling?) a year before that.
    They didn’t find anything and suggested that I stop drinking milk.
    I felt this is such an irony. If only I had been told to stop eating bread/gluten
    how my life would have been health problem free.

    I’m middle age now and just figuring all this out (all these gluten illnesses)
    I went gluten free during September 2010 and I just got the library books last week to understand it even more.

  13. Mark says:

    Where to start…???

    Ella you need a new family. They really don’t care.
    My uncle who cooks Sunday dinner for me, told me he bought some mushroom soup with cornstarch in it instead of the other kind that uses wheat.
    And he’s in his 80′s

    James… I got this book from the library called Dangerous Grains by James Braly MD
    it explains so much. There’s 5 kinds of gluten sensitivity and celiac catagories.
    Or you can find some other book on Celiac or gluten at the library.

    I was so hyper last week reading this book and others.
    I’m seeing the common thread with all my illnesses and my parent’s illnesses.
    My Dad was really smart and I wish he’d still be around to read these books.
    He’d problably be amazed at this gluten “poison” link.

    They don’t seem to talk about fibromyalgia on this web site… but it’s in one of my Celiac library books.

    If only every doctor read one of these books or read on this web site.
    So many people would be cured and I’m guessing half of the people wouldn’t need any pills anymore.

  14. Just over a year ago I had never heard of Celiac Disease. I did some research. I knew that allergies involve histamine and that histamine could not cause everything that was happening. Then one word reached out and slammed itself into my attention: antibodies. These messengers of invasion turn on all kinds of defenses. I have better than average comprehension of things and it took me more than sixty-eight years to figure out what was happening. No wonder there are so many completely clueless people out there. They need to suffer to understand.

  15. Ella says:

    This made me smile. I’m newly diagnosed and have had several family members tell me to suck it up that this isn’t that big of a deal, to just deal with feeling bad. I made sure to send this to everyone in my family. : )

  16. Eden says:

    I would get up and walk out right then and there if a doctor told me to my face that symptoms looked “Made Up” or downplayed the significance of Celiac Disease. Doctors think they’re Gods just because they went to medical school and we didn’t.

    Thankfully most of the people I know actually have Celiac and the ones that don’t are just as concerned…it’s a good support net. I feel really bad for people who don’t have that. Going gluten-free is a hard enough change as it is, it doesn’t need to be made worse by uncaring or just plain ignorant people.

  17. Mark says:

    I can understand the general public not understanding (while they suffer from the illnesses that they mock us for not eating gluten), BUT DOCTORS?

    Doctors should know better. It’s really depressing when I think of this.

  18. Jayne says:

    Great article, so true!

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