Awareness

The Gluten-Free Drama

15 Comments 16 November 2010

The Gluten-Free Drama

Over the past few years awareness of the ill-effects that gluten can cause in many people has been without a doubt on the rise. But it’s still sad, and almost comical, how much drama the topic can produce.

For instance, I was thrilled to see this post in the New York Times providing gluten-free recipes for Thanksgiving–how cool is that?! But scroll down to the comments and the same old arguments erupt.  Still, I think that all of the media attention that the gluten-free diet has been awarded this year thanks to Chelsea Clinton’s wedding and Gwyneth Paltrow’s healthy lifestyle is a GREAT thing! I really do!

Celebrities and media figures are realizing the benefits of a gluten-free diet and thus, the word is spreading. For those of us who have been diagnosed, whether we’re intolerant, sensitive or have celiac, we know that the road to recovery is a long one. Not because of the treatment, as that’s the same for all of us–don’t eat gluten. But the diagnosis.

I personally was about ready to give up, all my research proved that my symptoms ranging from migraines to acid stomach could all be a result of a gluten intolerance, but my GP didn’t know anything about gluten, and not knowing who to turn to, I went to an allergist, whose blood test came out negative, because I had eliminated gluten from my diet for the preceding three months.

But a chance encounter lead me down the right path, and I was diagnosed as severely intolerant to gluten. Do I have celiac? Well by definition, I would have had to go through an endoscopy to know. But I did not have the time, the money or any desire to go back on gluten for long enough to inspire accurate results.

So I may face discrimination from some sects of the gluten-free world. But it’s honestly not about them, it’s about me, and my health. And you and yours!

I do think that anyone who was diagnosed 20 years ago in a time before gluten-free options were so plentiful is a true rock star! And I think that anyone who has gone through an endoscopy is one tough cookie.  But I don’t think that others should be discredited because they are “just” sensitive or intolerant. Because the bottom line is that they too will suffer if they eat gluten. And the more verbal and trendy we are about the potential benefits of a gluten-free diet, the more of the suspected 40% of Americans who are sensitive, intolerant or who have celiac will have a greater shot at finding better health.

- who has written 104 posts on Gluten Free Fox.

Kristen Campbell and her "wonder dog" Waylon are both severely intolerant to gluten. Celiac? Perhaps. But they've never had the endoscopy to tell (human or dog--does that exist?). Fortunately, they found each other! When Kristen isn't busy at work, she loves mixing up natural, gluten-free beauty products under her self titled line, spending time with her favorite "wonder dog" and catching up with friends.

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15 Comments so far

  1. Bisby says:

    Wow thanks for saying it so wonderfully, I am in exactly the same boat as you. When I went to a seminar for #gfree eating I was asked by my neighbor was I a ‘real celiac’ or just sensitive. Shit the pain feels the same to all of us. ‘Celiac’ is just a symptom along with 300 other symptons. Pain is Pain and not eating gluten is a relief. How can we change this drama out there??

  2. Erin says:

    Kristen

    I think your second to last paragraph hits the nail on the head “But it’s honestly not about them, it’s about me, and my health. And you and yours!” You are 100% correct. You were struggling to find a solution for you and your health/sanity. Eliminating gluten did this for you. You are the only one who knows how you feel on the inside so don’t let anyone tell you anything else!

    I was diagnosed in 1981 by endoscopy and biopsy. My parents had a very long six months trying to figure out what was wrong with me as a toddler. Going gluten-free truly saved my life.

    Erin
    Gluten-Free Fun
    glutenfreefun.blogspot.com

  3. Here here! (or is it hear hear? I never have know.) I was diagnosed by an M.D. who practiced homeopathy first if possible. My sensitivity was determined by muscle testing and an elimination diet. It was immediately apparent that gluten was making me sick after that. Forget an endoscopy, you do have to be a tough cookie for that!

  4. Amy says:

    So true. I think all this talk about being a “true” celiac is really silly. It’s not like the celiac tests are foolproof. Nor is much known about non-celiac gluten sensitivity. Plus, if an intestinal biopsy does not show damage, does this mean the person isn’t having an autoimmune response caused by gluten?! Not necessarily. Although I’ve never been tested for celiac (and won’t be, since the test would necessitate a gluten challenge), I was diagnosed with alopecia areata in my teens and autoimmune thyroid disease in the last few months. I suspect that gluten was a contributor to both autoimmune conditions but of course I have no proof. Does it really matter that I don’t have the official piece of paper telling me that I have celiac disease? I can’t figure out why it would. I realize I might not get the validation of mainstream celiac organizations or “official” celiacs, but as long as I’m on the road to recovery, I don’t care. Cheers to you for discovering what works best for you!

  5. Annette says:

    I agree in part with what you say in that there is one huge similarity between people who are sensitive or have coeliac, we all veel sick if we eat gluten. However I would point out that someone who has Coeliac does a lot more damage to their body if they eat gluten and thus having CD as opposed to an intolerance is different. CD is an autoimmune disease, like Diabetes is but intolerance or sensitivity is just that. My gut has been so badly damaged from years and years of eating gluten but not knowing what was making me ill that it is not repairing itself now even being gluten free for 2 years. Although, I too am happy that the “stars” and famous people are bringing the Gluten Free Diet to the forefront and making people take notice although I get annoyed when I go out to eat and request my meal to be GF and I get looked at as if I’m being picky as opposed to the fact that it can actually be detrimental to my health. If someone who has CD continually (or even mistakenly) eats gluten it continues to damage the gut as well as increases your risks of cancer. But thank you to Chelsea Clinton and Gwenyth pawltrow for assisting all of us who need a DF diet, whatever the reason.

  6. Todd Bender says:

    This is a great viewpoint. As a confirmed celiac I appreciate your supportive and enlightened attitude!

  7. Rachel says:

    Aaargh. The picture you chose to go along with this otherwise awesome post shows, and in my opinion, celebrates, chemtrails. Or geo-enineering. This sky is dirty and sick.

  8. Diane says:

    We just discovered our four year old has severe gluten intolerance. We decided not to have the endoscopy since the treatment is the same. What I have learned from her Dr. is that being gluten sensitive, intolerant or have CD can open the door to other autoimmune diseases if left untreated. With in four days of GF I had a new little girl. Her behavior calmed down and she started sleeping through the night (what a relief for me!) My GP says that change in diet has no correlation to hyperactivity in children. HA, I have seen first had what it can do. Thank you for writing this article. Now we need to get the general medical community to take this more seriously.

  9. Jill says:

    I was diagnosed with CD in September 2010 after having both Endoscopy & Colonoscoppy. I guess I am a “tough cookie” I was amazed at how great I felt after only a few days of going GF. I gotta say that it pisses me off when I eat out and people look sideways at you when you ask for a GF menu or just ask questions about the food. The worst is when a restaurant doesn’t even know what GF means? SCARY stuff. While I feel better, I am starting to have symptons again like I did prior to being diagnosed. Back to the drawing board….. my gastoentrologist wants me to swallow a little camera so he can view the 25 feet of intestines that the other tests can’t see….. however– now i’m reading that casein may cause the same symtoms???? Confused? Yes I am. Any suggestions or feedback would be just great. I’m brand new to this site and have learned so much already.

  10. Eileen says:

    It took 20 Years for m daughter to self-diagnose. The pediatrician, endocrinologist, cardiogist, to name a few couldn’t figure it out, even though she presented with most of the symptoms. When she decided to go GF the hormone specialist she was seeing for delayed menses told get to go for it! Within 1 week many of her issues disappeared! Two years later, she is a thriving,happy engaged young adult. Do what your heart tells you! My ped advised her to take miralax for her bloatimg. My daughter had more sense than any of the doctors.

  11. Alison says:

    When I was diagnosed with celiac, I felt a lot of grief for over a year. A lot of people told me I “shouldn’t feel sad” because a lot of people choose to go on a gf diet, it’s trendy, etc., etc. This made me feel worse! I truly feel happy for anyone who finds great benefit from a gf diet, for any reason, but for me it stills feels like a terrible loss.

  12. Kat says:

    THANK YOU!! I’m intolerant. Never been diagnosed, and don’t care to be. It’s just Not worth going back on gluten… I still have bad days when I’ve been accidentally exposed to oats, or wheat, and that’s enough for me to totally stay off it whether I have a ‘diagnosis’ or not. People often ask if I Celiac and I have to tell them I don’t know. But I quickly explain what you have to go through to get the diagnosis and they always understand why I’ve opted not to find out.

  13. Pam Flick says:

    It is so wonderful to hear of a parent who goes to their own experience of facts for THEIR child regardless of the MD’s notions. I have suggested trying Gluten free foods for a couple of my grandchildren who have similar issues and believe anything would be worth trying for the children’s sake. Sad to say, my suggestions were not given a chance for trial. I hope more parents will at least try diet changes to help their children. I was diagnosed with Intestinal Metaplasia and prescribed a pill for stomach acid. Unbelievable the doctor had no dietary suggestions other than avoid spicy foods. Wanting to prevent the likely outcome of the Metaplasia turning to Dysplasia which generally turns to Cancer, I started searching alternative dietary options and a wonderful owner of a health food store was kind enough to suggest Gluten free, Sugar Free, Dairy Free & only Grass fed, free range beef, chicken & egg options for me. This and more not only helped my stomach but has stopped 90% of all the Autoimmune disorders which kept me miserable for most of my life. I feel better than I have in such a long time. Occasionally I have tested myself by eating sugar and dairy and many of the symptoms come back with a vengence. I refuse to test the Gluten as it was the first thing I eliminated with major health benefits as an result I am constantly sharing my story with anyone with Fibromyalgia, allergies, chronic unexplained pain, headaches, any autoimmune disorders and much more because I now feel so wonderful in comparison. The only thing it hasn’t helped is the pain from Spinal Stenosis. I want the world to know we do have options for better health and a much more quality of life.

  14. Sharon says:

    Very interesting connections between what we eat and the effects that has. My father was diagnosed in 1978 at age 46 and has lived gluten free since. I have been tested many times both with the endoscopy (nothing at all) and the blood test (nothing at all). Yet I have had intestinal discomfort for many years, often with upset stomachs as a child. I self diagnosed with lactose intolerance as a young adult but still never felt quite right. Gradually I removed other foods like apple and other fruits which helped a lot. However, it wasn’t until I found out about FODMAPs that I feel better, though still with some issues. Leaving onions and garlic out of my diet has made the biggest difference. No more brain fog, fewer aches and pains, no headaches make this hopeless diet reasonable.

    I am finding that sourdough bread works for me because it breaks down the fructans. It has been interesting to see that there are studies out there that find that real sourdough wheat bread MAY be a possibility for gluten free diets.http://www.celiac.com/articles/752/1/Study-Finds-Wheat-based-Sourdough-Bread-Started-with-Selected-Lactobacilli-is-Tolerated-by-Celiac-Disease-Patients/Page1.html . Sounds hopeful! More studies are needed but…hopeful!

  15. Lei says:

    I just randomly ran across your site and look forward to exploring it! I found out I have Celiac a few months ago. I just have to say that the endoscopy was like a spa day (sort of). The worst part was the IV! Other than that, the meds were great and I left feeling nice and relaxed. I just don’t want anyone to run across this and worry if they have to have one.


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