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Awareness
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Well, I guess the title sums up my question! I've been emailing all of the network Dr's on call asking them to do a segment about Celiac Disease and was wondering why no one's interested. Sometimes I feel that posting with others affected by Celiac gives me a myopic view of the significance of this health issue. When I turn off the computer and look around at the rest of the world, no one's interested because no one's even HEARD of the disease....unlike AUTISM, MS, AIDS, DIABETES, etc... But I haven't been completely useless. Our family has done the Celiac walk the past 4 years, we even had a fund raising kool aid stand and handed out literature detailing Celiac and donated the proceeds to the last walk we did. That was fun. That made the paper twice. We gave out 200 flyers on Celiac that day. Maybe three people who stopped by our stand KNEW what Celiac was! We handed out all 200 of our flyers :o

So, if Celiac Disease REALLY affects 1-133 people, why isn't it better known? Are we doing everything we should be doing to let others know? Or is there a conspiracy...(that's a ridiculous word, I know) but seriously, do you think the drug companies that make millions off of meds for the symptoms of celiac disease, keep the cause of the symptoms quiet because THEY won't make millions off of a gluten free diet?

Ok. I'm off track here. What have you done to promote awareness? That's the simple question. Now I'm getting off the computer, dressing my son in his Celiac shirt and parading him around town. Just kidding. We're going food shopping.

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Good thoughts and good question. As for myself--I actually have created a 4-fold plan to raise awareness locally where I live. (yes--I really am a dork!) I recently sent out letters to restaurants, and plan to send out more as well.

The next phase I'm entering (I totally sound like a dork!), is writing letters to previous doctors (I've had many of them!), and sending along celiac disease facts sheets as well, in the hopes that they will make Celiac info available out in the lobby/waiting rooms with other health brochures and info. Doctors are a hard group, harder than restaurants in some ways, because many of them have a great deal of pride in their knowledge base, and using consumer power doesn't work so well with them. The letter I've written to my doctors tries to use that pride our our advantage--humbly asking them to rethink their paradigm of celiac, and acknowledging that they have great power to influence the community and individuals--and that we need their help. I kept all my "annoyedness" at doctors to myself (like--years of being misdiagnosed!)

My third goal is to contact local grocery stores, praising for the few gluten-free products they have, discussing strong celiac community locally, asking for more products, and lastly, to try and work with local tv and newpapers to get the word out. Next week I am meeting with a woman (b/c of work) from WFYI, our public tv station. I plan on trying her for ideas too.

So far I've had some luck. One of the restaurants took my thoughts to heart and made several changes to the location I wrote about.

If these ideas don't produce great results, I plan on bungee jumping from Indy's tallest skyscraper during rush hour for attention, and then throwing stale wonder bread down on people's head. :P

Hmmm.... I still want to make myself some kind of fab celiac t-shirt too. Still working on that one... :)

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When I share my recipes, I note that they're gluten free.

I talk freely with coworkers, friends, random strangers (in real life) about what it is and what the ramifications are.

That's about it - I'm a word of mouth machine. :-)

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Tiffany-

Word of mouth is definitely one of the best ways ! I think I've told just about everyone I know :lol:

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Go Jen! ;-) Telling them all will just spread the word faster! :-)

I've thought about doing more, but there are other things that I've been more interested in increasing awareness in (like vulvodynia) and so forth. I've heard odd things on a few boards about politics in some of the groups, so I shied away from that avenue. (There's more than enough politics at work... *shakes head*)

For those who have tried calling doctors, how does that go? Do you ever talk to the doctor? Do you only talk to a nurse or a PA? Is the person you talk to responsive or dismissive? Does it generally take a long time with each person or a short time? I might be interested in doing that, but the logistics seem a bit overwhelming.

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I also usually get the word out by mouth. I am very talkative about it and pretty much everyone I meet will know about celiac by the time I'm finished talking to them, whether they like it or not lol :lol:

I am in the midst of contacting previous doctors(I'm going to be sending info about celiac to them too)...I've had mixed attitudes about the info.

When we called my one doctor the nurse took a message and the doctor called us back. Not sure if all doctors will talk with you but it is definitely worth a shot.

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Contacting ex drs is an experience. When I told my son's dr that we found out my son has celiac disease, he told me that children DON'T get celiac disease. He actually argued the point with me. He said it's an adult disorder. I was so stunned after a few minutes of our back and forth that I walked out of the room without a word. Never went back, either. This was a few years ago. My son's new dr is totally clueless as well, but she never disputes anything I tell her. She doesn't ADD any relevant info to the subject, but she doesn't care and she doesn't care to hide the fact that she doesn't care. I think she must think celiac disease is a non-issue or something. I don't ask.

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I feel bad, now. Not doing much for awareness. I don't send letters to people, cause most of the doctors I have gone to know about it and the ones I'm currently going to already know enough. And I'm a pretty shy person, so with the food being a social stigma, I feel most comfortable not going into the fullblown details.

You guys make them aware and I can help once they're diagnosed :D

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I'm a pretty shy person

:o I would never have guessed but that's fine..you help out quite a bit :D

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Not shy on the computer, particularly on this board. But shy in real life.

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Shy is an expectations we live up, or should I say DOWN, to. You're wonderfully extroverted here. I didn't suspect you were a teenager when I began posting here. Please stop 'being' shy and depriving the real world around you of your endearing personality/humor/inteligence. I have an idea. You said you live in NY, right? Why don't you make a banner for Celiac awareness and stand outside the morning news shows?!! :lol: Let's see if you can get Al Roker to interview you. Tell him JunkMonkey sent you. Sorry, I'm not telling you what to do...I think it's funny, that's all.

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I tell anyone who cares to listen, AND I write a regular column for my local co-op's bi-monthly newsletter about living the gluten free life... I haven't thought to contact former Dr.s but the current family practice that we all go to, I tell them ALL about Celiac, and they are so impressed with the turnaround in both my health and my daughter's health, that they can't argue with me. My Dr.s PA has actually started reading more articles about Celiac and educating herself about it. I was impressed at my daughters well check up that she (the PA) knew as much as she did about Celiac.

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You guys make them aware and I can help once they're diagnosed :D

And you're darn good at it. We all need a niche, right? Once we identify them, someone's gotta teach 'em. ;-)

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Thank you everyone! :D (particularly Tiffany and "JunkMonkey") :P

I have also decided to write to the first pediatrician I had. Most of my doctors have been pretty good, but he really messed up... dismissed all of my stomach aches, saying either that I wanted attention or that it was childhood allergies that weren't worth the expense of testing for and that I would outgrow them. For about ten years and with constant complaining of this he never thought to do anything or test for anything. I could have been living on intravenous nutrition for the rest of my life as a result of his lack of concern (malrotation) and he missed not one, but TWO problems: also celiac! I'm thinking of sending him a letter--just to show him how much he missed and to, at the same time, educate him on celiac.

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I am very blunt and upfront about it and tell people what I can and cannot eat and I don't care if they want to hear it or not. I am not shy and everyone does have a right to my opinion! :)

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I thought about writing my former doctors, too. A lot of them didn't have a clue and one even blamed me and said, it's all in my head. I really would like to educate them on celiac disease B) . I probably never know what they think about this, cause I doubt, they give me a phone call over the atlantic :lol: .

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On another chat board that I belong to I have my celiac story and a bunch of information and links about celiac in my community bio. I have had a couple people seek me out to ask questions about it and I have referred them here. I also talk to everyone who will listen about it, so now every one I work with (including a bunch of the truck drivers) are very celiac savvy.

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I also talk it up, to anybody and everybopdy that is interested and will listen!

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Oh, me too, for sure. In fact, I feel like as carriers of the disease it is our JOB to inform the uninformed. Most people will be surprised that they have never even heard of it, seeing as how it is NOT rare. (I don't consider 1 in every 130 people rare...) I like to let people know about it because beating ignorance is half the battle, if you educate you are that much closer to the finish line....

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The health food co-op that I get most of our gluten-free foods at didn't start carrying a lot of gluten free foods until I started writing the articles for them. Also if I have found products on the internet, and liked them, they will try to get them in for me and carry them for all of their gluten-free customers. Today they were having there summer festival and they were giving out samples of some gluten-free foods and the grocery manager was giving out Food's By George gluten-free Brownies... since the reason she got those in was because of my daughter, she cut her an extra large brownie for her to eat on the way home! I get so tickled every time I am in there and I run into more and more people on the gluten free foods aisle and I know that I had a lot to do with that section being created!

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I am a member of our local Toastmasters and gave a speech on it Tuesday. So there's about 20 more people who are educated on it! I got Best Speaker too!

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Way to go Julie5914! Good Job :D

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I had to educate the nurse at my drs today. She was taking blood from me and two of my kids for the Prometheus Labs celiac disease kit. It's so disheartening to be in a medical environment and have the professionals not know what you're telling them.

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Update on me--getting ready to send out the dr letters/fact sheets and my letter to Marsh--Indianapolis based, strong midwest grocery store. I hope to meet with the head of their purchasing soon. I also met with a woman from our public tv/radio station. I am contacting one of the shows that highlights medical issues to see if they will do a story. I'll let you know!

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Wow, Jen. You are really on top of things. Good Job!

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    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • I get these crazy cravings for some things I can not eat anymore. Not only am I diagnosed with celiac but I also have a allergy to corn, olives, sesame, peanuts, and intolerance to yeast, soy, dairy, and a very low tolerance for carbs/sugars, Top it off with I can not digest meats or egg yolks, they just give me the burps and come up later.
        To deal with these I find myself turning to Republic of Teas (They have a great desert tea line up all certified gluten-free) and sweetening them with monk fruit extract, or stevia. And I find myself making Puddings bases that I use for shakes, dips, and ice-cream for meals. The puddings are normally a blend of cashew, or almond milk with a thickening agent like agar agar, pectin, or knoxx gelatin, blended with a sweetener like xylitol, swerve, stevia, monk fruit or a combination. And flavored with Lor Ann Oils (all gluten-free certified and you can find the kosher ones listed as such) super strength flavors or fountain syrups to match something I can not eat normally a combination of two flavors (Strawberry Cheesecake, Banana and Carmel, Cookies & Cream, etc) Then I add a fat that matches best, like almond butter, cashew butter, hemp butter, ground flax seed, coconut flour, chocolate, Pumpkin seed butter or a combination) These bases are normally blended up and consumed with 1-2 scoops of protein powder and eaten with steamed vegges as a side dip or loaded into a ice cream maker for a desert after my meals.      Also found myself making desert soups....like a pumpkin soup that taste like pumpkin pie. I am sure we all have our little quirks but this is one of mine for getting that sweet craving taken care of. Most premade items are off my list due to the allergies and it seems most companies use the oils, starches I am allergic to as non stick or thickening agents, Even the semi safe ones tend to put way to much sugars in them and I find myself only being able to nibble . There is also my little binge issues with almonds, pumpkin seeds, and, cocoa but that was explained to me as normal And on my most craving for peanuts I have found sancha inchi powder to work great, The Powder itself taste like the girl scout peanut butter cookie sandwich from my childhood, And is great mixed with a bit of almond milk into a butter or used in baking and smoothies. Before this I have been making Artisan blends of almond butter for years and even made a market selling them to pay  for my own consumption. Baked goods wise I have a bunch of recipes I make for others and sell at markets and this allows me to nibble on a sample to check it, as most contain a bean or gluten-free Harvest Oats/Flour in them and the carbs from that and the coconut sugars bother me. Still helps with cravings there, I only have 2 recipes that sell good and are safe for me to eat full servings of but are so expensive as they use almond and coconut flours, low sugars/xylitol and are paleo that I only can afford to make them once a month. Posting to hear about some odd and out there ways others deal with substitutions and cravings. Please do not bash mine as odd as they might be as they keep me from going crazy. (Yes I know DROP THE OATS, fact is I only get them when tasting stuff and they are gluten-free Harvest, the only ones I have never gotten glutend with)  
    • After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of grains, but I have reintroduced rice using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My Paleo+Fasano diet has been assessed by a registered dietician to include every nutrient and micronutrient that I need so I guess having a really good diet is helping too. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. A lot of the steps I have taken to avoid gluten would be seen by some as over the top but I can say that for me, when I introduced these steps, that's when I stopped getting reactions and it's all worth it. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
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