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I was wondering how long this board has been here? I feel like there is an epidemic in our society that is being ignored. I do get overdramatic at times so maybe it's just me whose life is forever changed (I know it's not JUST me I have talked to many others) but how epidemic is it? Is it the 134-1 numbers commonly seen here or is it just the rare poor bastard like me and you that the doctors and usa society ignore? Maybe and likely this has all been discussed before and I just need the proper link to the proper thread? I wonder how many people like me are out there that have no clue? Someone mentioned that celiac has become much more known about since '97? I would think the interent has helped alot of people like me, it is the way I figured it out., not the docters, media ect...

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:( my dad is 71 and just diagnosed a month ago--he has had stomach probs for as long as i can remember--he has been very sick since the day he retired 3 yrs ago--he is 6' tall and weighed at least 250 and is now finally going back up and is now at 167--he was down to 150 and so very sick--almost constant diarrhea and the doctors had no clue--we asked to have him tested 2 yrs ago for celiacs and they didnt do it--he has been gluten-free now for over 3 weeks and is feeling better--i do believe there are a lot of us out there not yet diagnosed--i also believe that many people are gluten intolerant because we have so hyper breed our crops that we cant handle them anymore--celiacs is hereitary, but some of the intoerances is enviromental---deb
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I often wonder this, too. Being on these boards makes me think there are more people like me (and my kids) than maybe there are. Then, this last weekend I went to a holiday party where there were only about 100 people. Guess what? There were 4 people (including me) with celiac disease. We were all stunned. Random sample and it was 1 in 25. :huh:

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This specific board has been here since Dec. 31, 2003. There was, however, another board that was here before then. Because it was more cumbersome to navigate, a new board was created. The board still exists and you can read old topics...the old homepage is here: http://celiac.master.com/texis/master/sear...B&cmd=showlogin.

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I agree, it seems like society is ignoring Celiac. Other diseases are plastered in the media all over the place, everyday, celiac is only sometimes mentioned. Let's think about this, is the number of people with confirmed celiac about the same number of people in this country with AIDS? There might be more people with celiac than with AIDS or HIV.

Also, I don't know about you all, but I feel that society doesn't want to deal with people who have celiac or wheat allergies. Food manufacturers had to be forced by law to show if they have wheat on their labels - what does that tell you? Sometimes I feel that society feels that if they ignore celiac, maybe it'll just go away and leave them alone. I feel that unless someone famous comes down with celiac, there won't be anymore focus in the media than there is right now.

Celiac has no prescriptions which the pharmaceutical companies can make money on, so they ignore the disease. There's no push or campaign other than what the celiac disease associations do. No one writes to the Pres of US to tell him that more funding needs to go into celiac disease like they do for AIDS/HIV.

I work with a man who is celiac, who is constantly eating wheat bread and wheat bakery goods (I know this because he's even brought regular rolls in from the bakery on numerous occasions himself and offered it to us - he also eats the birthday cakes we bring in. I do holler at him, and he just grins and says he knows.) My husband is a severe celiac. People at work look at me strangely as I tell them how sick my husband is, and how he has lost a lot of weight and he's weak; then they look at my celiac co-worker and say to me "Well, so and so has it, and he looks good -- look he eats wheat products and it doesn't affect him?" So now to them they think I am making this up and my husband is pretending to be sick so as not to work. My co-worker's naughtiness negates my testimony about my husband's celiac. It's hard to live that down. So what are these people learning about celiac then? I try to tell them that my co worker is errant and that he's only hurting himself. They look at me like I am crazy. They have no clue about celiac and what the symptoms are.

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I feel for you, Deb! Someday, however, your coworker will suddenly be hit big time, be it like your husband or cancer or brain damage. If he has all the damage to his intestines, it really is just a matter of time. As irritating as he is, you should also pity him. (And pity can be so much more annoying to another person than irritation! ^_^ )

With four of us positive here in my house, I see all the different levels of reactions. My eldest has the worst reactions of us all, meanwhile his good friend, also positive (with a much higher positive blood workup than my son) has almost no reaction when he eats something. They are both being far more careful than your coworker (there must be a maturity/intelligence thing going on here that has nothing to do with age :P) Lol! I guess I get angry too when people are just stupid. (You should play up the long term health effects on celiacs who eat gluten, get your other coworkers to realize the one in your office isn't the brightest bulb in the office.)

Oops, sorry, I'm in a mood...

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I'm having many of the same feeling. Like there is no profit in helping celiacs so we must find out on our own, left to fend for ourselves by the medical community. There is little press on the issue, why? I can't figure that out, I would think and editor somewhere would have this and make a stink. And because the doctors ignore the problem everyone else (my family, friends ect...) don't buy really seem to buy it. I tell people what is wrong with me and how much better I fell after just 9 days gluten-free and they just don't seem to buy it, it's embarrasing almost. I wonder if this is another problem, people like me stop trying to tell others because of the reactions they get? I'd really like to understand all the causes for me finding out on my own what 5 doctors over 6 years could not figure out, it is insane, I'm not very bright. I figured it out. 1 of those 5 doc's coudn't have just thought "well, try not to eat gluten for a week" How hard is that? I had near every symptom and did tell them. My goal is to find 3 people who are still suffering from celiac and let them know what's up.

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;) that's a wonderful goal mcdougall-- :) wonderful, just remember even when trying to help some people they will ignore you :( --i worked with a girl--her mom has been diagnosed with fibromyalgia, i told her to tell her mom about celiacs and to ask for a blood test at least to see what comes up--get this <_< --her mom agreed that maybe she is celiac, but she would rather deal with the pain then to give up her food----sad huh-- :rolleyes: my own brother suffers migraines and stomach probs--my sis and i are both celiacs, but he refuses to listen to reason--he went as far as to say he was making us barley soup and wanted us to eat it so he could prove we are wrong :angry: never gonna happen bro--we did finally get our dad to be tested and now he has been gluten-free for 5 weeks :D and doing much better--but do try to meet that goal ;) maybe you can convince someone--deb
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As a P.S. I have to add that my celiac co worker is 78 years old. I guess he figures what does he have to lose at this age. He came down with celiac disease when he was about 72. WHen I holler at him, he looks at me like he did something wrong. You really can't stay mad at him, but it does make my husband look like he's nuts - that celiac disease really can't be that bad if so and so is eating wheat...

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I feel that unless someone famous comes down with celiac, there won't be anymore  focus in the media than there is right now.

I work with a man who is celiac, who is constantly eating wheat  bread and wheat bakery goods (I know this because he's even brought regular  rolls in from the bakery on numerous occasions himself and offered it to us  - he also eats the birthday cakes we bring in.  I do holler at him, and he just grins and says he knows.)    My husband is a severe celiac.  People at work look at me strangely as I tell them how sick my husband is, and how he has lost a lot of weight and he's weak;  then they look at my celiac co-worker and say to me  "Well, so and so has it, and he looks good --  look he eats wheat products and it doesn't affect him?"  So now to them they think I am making  this up and my husband is pretending to be sick so as not to work.    My co-worker's naughtiness negates my testimony about my husband's celiac.  It's hard to live that down.  So what are these people learning about celiac then?  I try to tell them that my co worker is errant and that he's only hurting himself.  They look at me like I am crazy.  They have no clue about celiac and what the symptoms are.

Gosh, i hate people like that :angry: . They make the whole thing look ridicoulesly (spell?) easy <_< . Well... it's not. When i hear something like that, that makes me want to slap and shake those people that it's not even funny anymore :ph34r: . I mean, helloooo!!! Wake uuuhuup!!! If they want to suffer from it, then they should just eat their wheat and shut the f* up. Nobody has to know that they are celiac.... Just sh.... Understand what I mean? But noooo, those people have to ruin the hard work we've been doing in getting other people to understand celiac in a split second. Sorry for my harsh words here, but i get so mad, when i hear things like that.

And while speaking about famous people with celiac. OK, this guy wasn't actually famous, I even forgot his name... lol :lol: . But well, he toured with Kid Rock and died i think during they toured. At least that is what i heard. He had to take over 50 medications every day. Some people say, he died from drugs (i mean the forbidden drugs like pot, you know what i mean?). Well, that's not right, he was celiac. They never made a big deal out of it. Even if that guy wasn't famous, the fact that he toured with a famous guy would have brought us some advertising. Oh well :( I guess, it shouldn't be...

Stef

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Now if that guy from "Kid Rock" survived and came out with his "celiac" we'd have something there. We'll never really know what he died from, but we all know that untreated celiac could be a factor (by untreated I mean not following diet 100% for many years)

But even still, I'd like to see the numbers for # of confirmed celiacs in USA vs. # of AIDS/HIV in USA and see which is higher. With all due respect to those with AIDS/HIV, why can't celiac get that kind of media coverage?

Sarcasm & tongue in cheek & a dose of sick humor perhaps... Maybe we should start a rumor that you can get celiac by sitting on a toilet seat....then maybe there'd be a rush to get a cure or a medication for it.

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:lol: very good deb----if they only knew how much time some of us spent on a toilet seat, they would be afraid to go potty :P deb
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The 1 in 133 number is how many people probably have some variety of elevated antibodies to gluten. That's about 10x more than have been actually diagnosed - so it's not surprising, sometimes, to feel alone in this one. But boards like this remind us that we're not alone. :-)

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    • 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. 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!        
    • Hello all  I have been living gluten free now for 6 months, as directed by my family doctor after a 6 week elimination diet revealed that I may be celiac or gluten sensitive. I was tested by blood work,  which showed nothing, and am awaiting a specialist to get a biopsy done. I am no where close to getting into see her as it is cased as a non emergency. I have been constantly having bowel problems, rashes all over my body, low iron, weight fluctuations, no energy, depression  and anxiety now for 6 years. Have been a huge nuisance(imo) to my doctor requiring constant antibiotics for this,  creams for this "mystery rash" and either laxatives for constipation that would sometimes go on for over a week to diarrhea that would keep my home- no in between . It hasn't been easy, especially whenever doctors are so quick to blame all symptoms as mental illness. Even though I have continuously told them I feel my issues are something simple...  not a mental illness. Anyways long story short, after going gluten free I have had somewhat Nnormal bowel functions, less rashes around my stomach, been able to cut back drastically on my depression medications and anxiety meds, and energy has taken a huge improvement  which all is great! But .... I am constantly HUngry have gained 20 lbs and can no longer fit into most of my clothes. This is really bothering me because I am afraid I am approaching a weight problem.  At only 5'5" weighing 165lbs is large to begin with. Especially whenever I have two children and have only EVER weighed this much while being pregnant with them. I am 26 years old and just tired of not being myself. I am physically healthy and just would like my body to act it. Any help would be greatly appreciated, as I said I am only 6 months into my journey and have definitely re exposed myself to gluten (accidently) many times in between. Much love. 
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