Explaining Gf As Lifestyle Choice.

[dogear]

After about a year, I've gotten comfortable about admitting to a few close friends, but no relatives yet, that I'm gluten free. I told one friend of mine who actually has celiac disease, expecting that he would be furious and immediately terminate the friendship and never want to speak with me again. But that didn't happen. In fact, he was of the "gluten isn't good for anyone" school.

I've told a few waiters and people in contexts where nobody I knew was listening, "I don't eat wheat.", and left it at that. Once I even worked up the nerve to ask an herbalist if his supplements were gluten free or not. When he asked me if I was celiac, I told him that I was not but felt notably better gluten free. He said something to the effect of "there seem to be a lot of people like that", which makes me feel like less of a freak.

Sometimes even buying Ener-G crackers or the gluten free cookies from Midel, makes me feel like I'm doing something bad. Like I'm taking an incorrect antiobiotic or buying drugs illegally. I often will go out of my way, or even go without specifically gluten-free products to avoid an item where it specifically uses the term celiac or in the case of Ener-G crackers "gluten sensitive enteropathies" on the box or package. It makes me feel like I'm doing something very wrong, and just plain shouldn't be on this diet. It makes me feel obligated to just go buy a bread roll and eat it right there, even if I'm not hungry and have plenty of gluten-free food at home and with me.

Although nobody reacted badly to the whole thing yet, I can't shake the feeling that I'm a weirdo for having a gluten-free lifestyle but no diagnosis to call for it. And yes, I did feel better on the diet, but the fact I wanted it for years without expecting any health benefits still makes me feel really weird about the whole thing.

I'm often ashamed of myself when celiacs speak of the foods they miss, while I have an extremely strong emotional aversion to ever eating them again.

Am I going crazy?

[bluelotus]

Not a weirdo at all. I've had negative responses from a few people. Some relatives seem to think I am lying or overreacting - their line of thought is "how can food be poisonous", then again, they are overweight. I hate it. I lie all the time to co-workers, professors, and friends - "no, can't go out to eat, I have to study" or "no thanks, I'm allergic to wheat" (not true obviously). There are just some people out there that don't believe or accept health issues/concerns like this ...... but maybe karma will work out and they will experience it firsthand (not that I would wish this on anyone). Anyway, you are not alone and I am sure that others have had similar experiences. Hang in there and I wish you the best.

[tarnalberry]

Some of us do not have "formal" diagnoses, but we know that gluten-free makes us feel better. If your body has told you that it works better without gluten, you're doing the right thing listening to it! The physical reaction and your quality of life is a valid diagnostic test in determining whether or not you're gluten intolerant. And there is growing recognition in the medical community for being gluten intolerant without yet having sustained enough intestinal damage to be diagnosed with celiac disease.

Any choice you make to better your health (that isn't hurting other people, so no cannabalism ;-) ) is a good choice, and good for you for sticking with it! I hope you outgrow the feeling that you're doing "something wrong", because it sounds like you're doing the best thing you can do by listening to your body!

[ianm]

I wave my celiac flag high and proud. I used to be obese and my life was an absolute disaster because of it. I don't have a formal diagnosis and don't need to because it is so obvious what the problem was. I tell everyone wether they want to hear it or not that I can't eat wheat. If they don't like it or get offended I really don't care. It is my body and for the first time in my life I am healthy and things have never been better because I don't eat wheat anymore.

[Guest nini]

speaking from the perspective of someone with an official dx of celiac, I also want to congratulate you on your determination and your willingness to listen to your body. I personally don't believe that you need a medical dr. to tell you that gluten is bad. I guess I am also of the school that says that no one should eat gluten.

Please stop feeling guilty about buying specifically gluten free products. The more people that buy these products, the more companies will make more and better gluten-free products!

[tiredofdoctors]

I think I know how you're feeling. I'm not a Celiac, but I have Gluten Ataxia. I have spent the last year getting progressively worse, now I'm in a wheelchair. I told the counselor with whom I work that I felt like the family freak. Now that they have determined that gluten IS responsible for my condition, I told her that I'd feel like an even BIGGER freak. ("We can't have birthday cake because she can't eat it . . . " "We can't have fried chicken because she can't have it . . . ")

When I was in the hospital, a pastor visited my roommate. He was talking about Psalm 27 (and, believe me, I'm spiritual but NOT religious). But he also talked about fear. He said that FEAR is False Evidence Appearing Real. That has gotten me through a lot of this.

I read in the friends and loved ones about a boyfriend who made gluten-free brownies for his girlfriend. I told my husband about that -- he said "They have that stuff available?" I told him that maybe they did. He took me on an all-evening shopping spree tonight. We found more gluten-free stuff than you can imagine. I called my parents to tell them -- my dad was SOOOOOO happy. He said he can't wait to taste the things and that he's so glad that we can all have birthday cake together (it's a big deal in our family).

I'm starting to think it's not so bad. When you tell someone that you have a gluten-free lifestyle, you show them that you're proactive about taking control of your health, diagnosis or not. I think it shows that you're someone who is empowered and dedicated to being the best "you" you can be. Sounds hokey, I guess, but I think there's some truth to that.

I am a healthcare practitioner, and I can tell you that when I was practicing, the first 1/2 hour of my evaluation was spent listening to my patients. THEY told me what was wrong with them. The evaluation portion was easy then. I think the biggest mistake that doctors make is NOT listening to their patients. I think they should ask at least these four questions: 1) What does it FEEL like when it happens to you? 2) What makes it better? 3) What makes it worse? 4) What is the impact that it is having on your life? It has been proven that the average physician listens to his/her patient for 7.5 seconds before interrupting. Think about that the next time you're in a doctors office. Who knows you better? You, or the doctor? The doctor knows MEDICINE -- facts, signs, symptoms, and a lot of what the drug companies tell them. But does the doctor know YOU???

You're certainly not a freak or different or any of those other negative terms for taking care of yourself. You are to be admired, and for many, should serve as a role model. Sorry this was so long, but I feel REALLY strongly about it!

[aikiducky]

Tiredofdoctors, thank you. As a self-diagnosed person, that was really good to hear.

Pauliina

[tiredofdoctors]

Anytime -- we're all in this together!

[VydorScope]

Okay, I hope I do not sound cruel here, or unfeeling, cuase I do not mean to... BUT WHO THE HECK CARES? Its like when I was in college, I did not drink OR smoke, and if ppl thought I was wierd, thats THIER PROBLEM, not mine or yours.

I realy think a lot of us would be healthier and happier if we just stoped putting so much importance on what other ppl think of us. "You are to skinny!" "You are to fat!" etc! BAH!.

You seem to imply you feel sick when you eat gluten, THEREFOR you are at least gluten intolerant, that is all you should need to make the choice. If others can not accept that, then sorry but I do not think you should call them friend. A friend would care about your health and well being.

Thats my take on it at least.

[KaitiUSA]

I totally agree with the previous post(by VydorScope)

Who cares what other people think...that is not your problem. Not everyone will understand and not everyone will like you but thats life.

I personally am proud to be celiac and I tell people about it every chance I get.

Remember, NOBODY can make you feel inferior without your consent.

[tiredofdoctors]

I think it might be easier for some patients to ignore what others think than it is for others. I agree that 1) It's no one's business and 2) we really SHOULDN'T care how other people react, but converting that into your personal being could be difficult, depending upon how you were raised, life history, etc. Maybe, Pauliina, it would be easier to venture out to restaurants, etc. with people who feel "safe" to you -- the friends or family that don't judge you and support your decision to be healthy. That's what I did with my wheelchair -- it got easier and easier. Most recently, I wheeled myself 10 blocks downtown from my MD appointment to my favorite fabric store. I specifically sought out one lady who I knew was "safe", told her of my accomplishment, and she hugged me and we celebrated it rather than my being ashamed of being in a chair. I'm going out to dinner only with my husband right now, because he makes me feel good about choosing to be healthy, and is supportive of me saying "can you please make sure that it's cooked (this way) and that it doesn't come in contact with (anything containing gluten)?" Have gotten some stupid looks, but my husband gives me a back-up so that I don't feel like I'm hanging on a limb by myself. Just some thoughts.

[jenvan]

dogear--

i think you are way too apologetic! feel confident in the choice you made and that you are caring for yourself well. and know that those who care for you will support your decision, and hopefully try to understand it too. try and continue to share this with others . the more we share the more we will raise awareness (which makes things easier for us) and the more people who will figure out they have celiac or gluten intolerance as well! (ps--i love those mi-dels too

[aikiducky]

Actually I completely agree that it's nobody's business but mine that I choose to take care of my health. I think I'm fairly convincing about it in person, too, because I really have had amazingly little doubting reactions from people.

But, I am self diagnosed, and so from time to time, it's just GOOD to get a bit of validation. That's all.

To the original poster, re: buying gluten free stuff - look at it this way, if more people buy gluten free products, there's more of a market for them, availability goes up and prices go down. All good.

Pauliina

[tiredofdoctors]

Hey Pauliina! Way to go. Think of it this way: I have never been diagnosed with an allergy to Tetracyclene. When I was a kid, they gave it to me, I broke out with these enormous hives, and they had to take me to the hospital to get medicine. Did they ever do a TEST to tell my mom I was allergic to it? No Way! But they said I was. To this day, I tell doctors that I'm allergic to tetracyclene. They ask what happens - I say - I don't remember, but my mom says . . . . !!!!!

I agree about the gluten free products getting more popular, too -- Gluten-Free Brownie Mix is $4.79 here -- Betty Crocker goes on sale for $1.19!!!!! Have started gluten-free cooking -- it's pretty good. Had pancakes for dinner tonight because the I started making the soup that was SUPPOSED to be dinner too late! Added some flax seed meal to the batter -- pretty tasty! My husband thought they were great. I was also happy that I could get gluten-free bread mix -- now I can have sandwiches, too. That was one of those "Do you mean to tell me I can't even have a peanut butter & jelly sandwich anymore?" issues for me!

Take care of you -- stay strong!

[dogear]

Ianm,

You say that you were obese on gluten, but the diet cured your obesity?

I was never severely obese (just teetering on the threshold between overweight and obese), but a combination of no gluten and no excitoxins seems to have cured that. I mostly attributed the weight loss to the excitoxin part. Now I sort of wonder.

[ianm]

I wouldn't say it "cured" my obesity but it certainly explained why I had gained so much weight and couldn't lose it until I went gluten-free. I have to carefully watch what I eat and control my portions plus lots of exerecise are required to maintain a healthy weight. It is a lot of work but consider the alternative.

[dogear]

You see I always sort of struggled with my weight, but had only in the few years before The Diet started to skirt the borders of obesity.

Now I find it fairly easy to control my weight. I don't eat any junk that EF (excitotoxin free) and gluten-free, and I do excercise, but my weight problem seems to have sort of gradually cleared up on the EF/gluten-free diet.

The EF part started a few months (didn't keep exact track), before I went gluten-free (though at one point I was cutting gluten and buying Trader Joe's gluten-free waffles in a sort of "guilty" secret) sort of way. Until now, I mostly attributed the weight problem the the excitotoxins, and I have no doubt that they were a HUGE part of the equation. But did the gluten-free part make a difference? I don't really know.

[Guest BellyTimber]

That's a bit like I have felt since my doctor didn't put me onto the road to a celiac disease diagnosis.

Participating in this board and another one on the same subject has boosted my confidence.

[CeliacMe]

YES YOU ARE CRAZY! Tell everyone about Celiac. I tell everyone, my whole family is getting tested. See, the more people with Celiac, the more food manufacturers will see it as a profitable market and make food that tastes good and is more readily available. Outback steakhouse, PF Changs and Legal Seafood have gluten free items on their menus because of big mouths like me.

[tiredofdoctors]

CeliacMe: Good Job! We only have Outback here, but it's inspiring to know that you've made these companies make positive changes for their consumers. I'm not great at "taking a stand", but I think you've changed my mind! Keep up the GREAT work, and I'll see if I can get up enough courage to start in there with you!

[Paul-Bunyon]

Not a weirdo at all.  I've had negative responses from a few people.  Some relatives seem to think I am lying or overreacting - their line of thought is "how can food be poisonous", then again, they are overweight.  I hate it.  I lie all the time to co-workers, professors, and friends - "no, can't go out to eat, I have to study" or "no thanks, I'm allergic to wheat" (not true obviously).  There are just some people out there that don't believe or accept health issues/concerns like this ...... but maybe karma will work out and they will experience it firsthand (not that I would wish this on anyone).  Anyway, you are not alone and I am sure that others have had similar experiences.  Hang in there and I wish you the best.

<{POST_SNAPBACK}>

Some people are so ignorant...and they think we're the crazy ones. How about diabetics? Do they think sugar doesn't harm a diabetic?

[jmarie]

I know this isn't going to be a popular thing to say, but since you brought it up, I am kind of annoyed at the volume of people on this message board that don't have celiac disease. What are you doing here? If you just want to be gluten-free, great, good for you. It's probably a healthy choice.

But isn't this "Celiac.com" for people with a disease that renders gluten intake life-threatening? Isn't it here that I can communicate and empathize with people who have suffered debilitating symptoms, then had made a drastic lifestyle change to save their lives?

I don't fault anyone for needing support with a diet, but I don't think this is the place for dieting support... Maybe I'm in the wrong place. I have a brother with a birth defect due to this disease and my mother is gone from an autoimmune disorder related to progressive celiac disease.

I don't think you should lie about it, that's ridiculous. That's mocking someone's illness... like saying you have cancer when you don't. If you just don't eat gluten, just say that: "I don't eat gluten because it's not good for me". The end.

[Rusla]

I know this isn't going to be a popular thing to say, but since you brought it up, I am kind of annoyed at the volume of people on this message board that don't have celiac disease.  What are you doing here?  If you just want to be gluten-free, great, good for you.  It's probably a healthy choice. 

But isn't this "Celiac.com" for people with a disease that renders gluten intake life-threatening?  Isn't it here that I can communicate and empathize with people who have suffered debilitating symptoms, then had made a drastic lifestyle change to save their lives?

I don't fault anyone for needing support with a diet, but I don't think this is the place for dieting support... Maybe I'm in the wrong place.  I have a brother with a birth defect due to this disease and my mother is gone from an autoimmune disorder related to progressive celiac disease.

I don't think you should lie about it, that's ridiculous.  That's mocking someone's illness... like saying you have cancer when you don't.  If you just don't eat gluten, just say that: "I don't eat gluten because it's not good for me".  The end.

<{POST_SNAPBACK}>

Perhaps you don't realize that some of us don't know whether we are or not and some have hand false negatives. Some don't show on a blood test and have to wait for other test. Many have the same symptoms as Celiac and are trying to figure it out. Some people can't see specialists because of extreme waiting lists or some specialists won't see them if a blood test is negative. Others have had positive in biopsy and negative on blood test and they are still confused.

The medical profession is often vague and not forth coming on many things with people no matter how hard you push. So is it not better that those who are waiting, those who don't know yet find out all the information they can. If they don't happen what they find out here could help others along the way and some day because of being gluten sensitive they could be Celiac.

Do you honestly think people who are on here are mocking those who know for sure. Some are here because they have family and friends that are and they are trying to do the best by them are you going to begrudge them the knowledge to help friends and family?

[aikiducky]

But isn't this "Celiac.com" for people with a disease that renders gluten intake life-threatening?  Isn't it here that I can communicate and empathize with people who have suffered debilitating symptoms, then had made a drastic lifestyle change to save their lives?

<{POST_SNAPBACK}>

What you're forgetting is that several people here, who don't have celiac disease, or who don't know for sure that they have it, have suffered from debilitating symptoms and made a drastic lifestyle change to literally save their lives.

I don't know for sure that I have celiac disease. It's too late to test for it now. The change from eating gluten to going completely gluten free wasn't any easier for me without a positive diagnosis. If I accidentally eat something with gluten I still get sick and miserable. I'd say it's about a bit more than "dieting".

Basically you're illustrating perfectly why it's so difficult to be gluten free in this world...it's bad enough when it's comes from people who never heard of celiac before.

Pauliina

[darlindeb25]

JMARIE, you are very wrong in saying this: "I know this isn't going to be a popular thing to say, but since you brought it up, I am kind of annoyed at the volume of people on this message board that don't have celiac disease. What are you doing here? If you just want to be gluten-free, great, good for you. It's probably a healthy choice."

Everyone who comes to this board comes because they arent feeling well and are looking for help. A healthy person would not be looking for help in a gluten free forum. If they only want to diet, they dont give up wheat. This is a very uncaring statement.

You aren't alone in the fact that your family has suffered from celiacs. My daughter was born with a birth defect because of my celiacs and it hurts me to think that is my fault. She is 23 now and has had pain most of her life. I feel she is celiac too and she doesnt want to deal with it. I wish she would read in these forums and see there are others like her out here. I also have a son with ADD and it effects his life everyday and I have another son who had learning disabilities all through school and I know it was because of my celiacs. If I would of had access to something like this forum, maybe I would of figured things out much sooner. My sister and father are both celiacs too and we have suffered all our lives with this--he is 70, she is 47 and and I am 50--she and I have known for 4 yrs and our dad for just 1 year and he has been very ill for the last several years.

I too feel that everyone would be better off without grains. Grains are for fattening animals. My mother always said, "Corn is for fattening hogs and milk is for baby calves!"

As for you Dogear--tell everyone, dont sit back and worry about what they think. You have to worry about your health and if you give them a chance, I bet the majority of them will help you. Much of the time, people dont understand how serious this is and they have no idea of the unusual items that contain gluten. I tell everyone upfront and if they choose not to understand, then that is their problem.

Deb