tennisman

I have been gluten free since I was diagnosed in 2003 . But lately I have been really struggling with the diet the last year and half or so I keep thinking of the foods I miss I get really angry it's driving me mad I don't get why 7 years the diet never bothered me but now I hate it .

For ages I have also had depression , anxiety , anger problems , i'm very very paranoid and have very strange sleep problems , I have been going to Counselling and they said my sleep problems could be sleep hallucinations it really scares me when it happens and I always feel very tired the next day . I find Counselling helps but it never stops the problems .

I know celiac disease is linked to depression , anxiety , fatigue etc and whenever I think about celiac disease , the problems become worse , I also get so angry when some non celiac's talk to me about celiac disease like not believing a little bit of gluten can make us ill , recently a non celiac said a few things when I was eating in a restaurant and I got so angry and broke some of the restaurant cutlery .

It sucks feeling low and hating celiac disease and the gluten-free diet so much I don't know how to cope celiac disease , after 9 years with it I find it keeps getting worse , when I should be used to it by now

I don't believe gluten is bad for everyone , lots of athletes eat pasta before playing sports surely if gluten was bad for everyone the athletes would struggle eating pasta before playing sports . I think the gluten free diet is over rated , I have more health problems on the gluten-free diet than before I was diagnosed :S I have read lately gluten damages everyone's villi it's complete BS otherwise everyone would be diagnosed with celiac disease . I don't know where the gluten damages non Celiac's villi information comes from , these days the gluten-free diet is seen as a miracle diet I have known healthy people go 50 % gluten free for the hell of it and say they are now Celiac I find it very annoying people seem so desperate to have celiac disease I don't get it.

Hi tennisman,

Happy to know that you are having great time with nicely prepared gluten-free meals, i guess you are mentioning Indian restaurant outside India. where is this located.

Thanks

Nannu

Hi Nannu ,

The Indian restaurant I went to is in England . Indian restaurant / take away's are very popular in England and usually all the main dishes are gluten free . The waiters always say no flour

I have a positive funny story for once Earlier I went to eat at an Indian restaurant , have been there before a few times , always have a nice gluten-free meal Today I decided to try something new , I asked is it gluten-free and the waiter said yes . It was a sweet and sour dish and I asked it has no soy sauce . He said I will get the ingredients for you and bought me a jar of supermarket curry sauce lol wasn't expecting that . It was gluten-free I think they must have added spices etc because it tasted a lot nicer than a supermarket curry sauce . It was kinda cool they let me read the ingredients so I could relax and enjoy the meal knowing it was definitely gluten-free

A very long time ago, I worked in a child care facility for troubled kids. One of the things we were taught during our training sessions was that anger usually comes from frustration. When people experience frustration, that frustration can express itself as anger.

It is safe to say that the life of a celiac is one of constant, continual and unrelenting frustration. Even

My Mum was diagnosed with celiac disease when I was 10 and I understood it well and I was only 10 ! Even my italian granny who doesn't understand much english or italian :S understands celiac disease and how we can't have any gluten . I think a lot of people not all but a lot act stupid on purpose to get a reaction out of us .

I am new to gluten-free and new to knowing I have a problem. It dismays me to read these comments and what I can expect to hear from people. I don't really understand why people have opinions about things they know nothing about. I have been in a wheelchair due to neuropathy for 5 years. I am able to walk but the pain I had before my wheelcbair was so severe that I was all but home bound and was taking opiates around the clock (and still in pain). I chose to use a wheelchair so I could get on with my life. Just this morning my mom tells me to take a walk outside so I can go play with my daughter in the snow. Excuse me? Of all people she knows what I've been through, but even so, there she was telling me to just go out walking (and trust me, after 5 years immobility I couldn't do that if I wanted to.)

I wish people would just keep their thoughts to themselves! :/

I hope you won't have to hear any negative comments . It's ridiculous why the people say things especially if they are only doing it to wind us up. Sorry to hear about your medical problems , I hope gluten free will help you

It would be nice if people kept their thoughts to themselves maybe 1 day

My response to this is always the following, they need to think before they say crap like this.

"Oh, I would die if I couldn't eat bread."

"Don't worry, it'll kill you first."

I agree they need to think before they speak !

Up to this point, I haven't found anyone who was really deliberately nasty to me. There's a whole heck of a lot of bewildered ignorance, or the usual same stupid stuff that people say, but nothing that suggests that people aren't supportive of it.

I think a lot of it has to do with the fact that most of my work colleagues saw me shrink in half when my acute celiac set in. I lost 40lbs basically overnight, but kept working even when I was at my sickest, and probably *should* have gone out on medical. So, I might get some silly comments or questions, but most of them continue to see how much I struggle with it every day.

I get a lot of "Oh, you can't eat cake? Well, what about____________?" And then I clarify anything with wheat. And then we have to do the list thing...pasta, bread, pizza, hamburgers, etc.

Then there's, "Oh, I would die if I couldn't eat _________." (This was from a trained nutritionist by the way ). Or, "I would get so bored with your diet." Yep, me too. But alas.

I also get a lot of people coming up to me who genuinely want to talk about it and know about it. I'm a busy person at work, so that can sometimes get annoying, but I try to make time. Because generally, they're asking for themselves or someone else they know. And since I know how terrifying it is to be extremely ill with no known cause...I feel like it's a personal responsibility to spread knowledge about celiac if I can.

Oddly, my mom has been the worst offender when it comes to hurtful comments, but that is nothing new. "I just don't understand how wheat can be hurting you. You've eaten it all your life." Yes, Mom. Exactly the problem. Or my favorite, the appeals to history AND/OR science AND/OR religion. "People have been eating wheat for thousands of years, and they've been fine and healthy. It's in the bible as the staff of life." Not having this argument for the umpteenth time, Mom.

She's always downplayed, minimized, or ignored my medical problems. Part of the reason I was diagnosed so late is because we didn't go see the doctors for my insomnia or migraines when I was a kid, or the dermotologist for the rash on my back, or a psychiatrist for my pervasive depression. The care I've gotten is as I've been able to afford it, on my own terms, after I became and adult and moved out.

So to get back to your original post, there's plenty of people out there who are extremely harmful, and deliberately ignorant. Many because they're corporate shills or government actors pushing an agenda, but also because they really don't WANT to understand and it doesn't matter how much you try to educate them. It will never matter. So to be a downer, but that's the way it is.

I'm surprised a nutritionist would say that I kinda like the comments about " I don't know how you can stick to the diet " . I look at in a few ways 1 we celiac's can stick to a diet for years never cheating which other people say they couldn't do . Kind of makes me feel good I have achieved something which someone else thinks is difficult . 2 they have actually thought about the diet and difficult it could be instead or making a negative comment.

That's good people are interested and want to learn about celiac disease , and you can give the the details about it so they understand properly A few times at parties people ask why don't I drink beer and interested in celiac disease . Although 1 time I told 1 person about celiac disease and they poured beer on my food luckily I spotted him otherwise it would have been a nasty wa to be glutened .

Sorry you didn't get to the doctor's quicker I hope all your symptoms are gone now . I don't like all that people have been eating wheat since ... Shame gluten was ever invented lol.

I think these people were set up . On Coeliac uk facebook the person said prescription foods are junk and it's crazy the national health service should give anyone bread , pasta , biscuits , cakes and corn flakes . But little does this person know cakes and corn flakes are not prescription items . Caught red handed

there was this one time when i went to a friend of mine with my son, she knows that my son is celiac so i was planning on taking his snacks but she told me that everything is going to be gluten free, so i was so happy that i am not going to be worried of him eating something with gluten in it.

needless to say i went there and when we were watching a movie she got popcorn (a very good start), then she went back to the kitchen and got cake, i asked her is this gluten free, so she assured to me that they are and said that she read the ingredients over and over again, so i told her to show me the box the first ingredient said flour, so i told her that this contains gluten, do she started telling me if you dont want to eat it dont eat it, but look how skinny your son is let him eat some, so i told her about his problem AGAIN, then she jumped up and told me well 3 months ago on his birthday he was eating cake and cookies, and i am pretty sure they were made of gluten, so if he had it for more than two years and nothing happened i am sure he can have it now....

i dont know why i stood there arguing with her anyways, i sent my husband a msg to call me and pretend that it is an emergency so he did and i left that day and never returned, now we are still friends but not that close

That sucks glad you managed to get away quickly . It's very terrible non celiac's try and give advice they know nothing about.

I used to stop myself from being hateful, but when somebody is rude about me eating gluten free, I just tell them I hope they get to experience the kind of pain I experience when I eat gluten. Sometimes I mention explosive diarrhea and excruciating joint pain that kept me awake for nine months.

So what if they think I'm nasty. I think the same of them.

Good thinking give them a taste of there own medicine . I think some people are just ignorant . Mention the D while they are eating

Oh, the cultural thing is a bit different, as over here, (across the pond) if you are not medicated to the gills with some sort of addictive or prescription **** with horrible side effects, you have nutcases telling you that you don't really have the disease.

You really have your hands full over there with the return of the Thatcherites trying to privatize the NHS and all this "austerity" - consider that on the internet, you never really know who or what you could be interacting with, and these trolls could have another agenda that they are not disclosing. I follow a few "food trolls" over here and their real life identities, and who is paying them to say this garbage they have posted on the internet, would shock some of their real life acquaintances - they are not stupid, they are usually very smart, highly educated, and very, very malicious. The maliciousness extends to being able to organize other stupid idiots to post garbage on the internet for them - I've seen solicitations from one of the dishonest, creepy Big Dog "science" editors at a well known blog calling for people who can critique science writing online, and the criteria is, "no science background needed."

Think about that. They're given talking points written by some organization funded by a corporate think tank, and sent out to spread it.

Creeps like this, who make it a big deal to stay anonymous on the internet and/or who change their usernames a lot while cruising around sowing their particular disinformation, are pathetic. That's why they stay semi - anon, because in a clean debate, any of us could and do wipe the floor with them. Don't take it personally, they're just doing it for money.

That's bad these nutcases are pathetic . It's messed up these things can happen . Someone who commented from the article has joined the Coeliac UK facebook page and said some bad ridiculously stupid things . He is getting ripped apart now It turns out some of these people are pretending to have celiac disease and telling people who have celiac disease they are uneducated . But there strange comments and wrong info about celiac disease is making them get caught out at fake Celiac's wow that sounds strange fake Celiac's . Maybe they will get celiac disease after complaining that would be justice

Gotta find out who has sent the trolls to this article .

I will try not to take it personally , on the article some none Celiac's have stuck up for Celiac's so it seems it's just a few morons causing trouble . Thanks for the reply

Thanks for the replies

I guess it's my own fault party the people who say study things in real life like friends I don't see anymore . It's more online where the problem is . Everytime I see an article about celiac disease and there are negative comments I just get angry and I guess that encourages people to wind me up more .

Here is the latest article story it's from the england or maybe it should be re named to stupidland. Basically we get prescriptions on the national health service bread , pasta , crackers , flour , bread mixes all plain replacement foods . We pay just over 100 pounds to get these prescriptions . Recently the government wanted to cut down on ' luxury ' gluten-free foods from prescription . Now they want the gluten-free banned completely . The article has had a lot of comments from negative non celiac's saying stupid things . The national health service in uk give drug addicts illegal drugs they give smokers help for giving up smoking but they want to ban gluten-free food it annoys me too much .

Here is an example comment that is annoying me - I don't want my tax money spent on feeding people with a food intolerance. I helped pay (via taxes) for the research and diagnosis and don't begrudge it for a minute. However, gluten free is NOT a treatment or medication. The taxpayer should not foot the bill.

After reading this you wouldn't believe how mad I get. How a person without celiac disease can say gluten free is not a treatment or medication

Like everyone here celiac disease has wrecked many years of my life I have now had 7 years in a row with extra problems and when celiac disease gets talked about an intolrence and not taken seriously I get too annoyed .

Here is another few comments all non celiac's - downgrading a diagnosis to ?intolerance? (to make it sound like a fad or phase that people go through).

It's sad to read such incorrect comments from so many coeliacs who are uneducated about their own illness!

I'd like to eat meat every day, many people would consider that a "staple" part of their diet but I can't afford it and I doubt the NHS will prescribe me any!

These are just a few examples , I know probably I shouldn't take these comments so personally but I find them very hurtfull

I should just let this go but celiac disease is treated as a joke and I want it to be taken seriously . This is a massive set back for celiac disease . I just don't want the uneducated win this battle about celiac disease being not serious

We all know people who just won't understand why we eat a gluten free diet . No matter how much you explain celiac disease and the health problems etc . Are these people just very stupid or are they doing it on purpose to wind us up ?

I think probably i'm over reacting a lot of the time but it's really doing my head in now . I have have been on the diet for 9 years and I'm just bored of it all the foods and drink I used to like I have eaten so much I no longer like these foods even junk for like sweets and fizzy drinks I dislike now :S

Yet people tell me I'm only gluten free because they think gluten free foods are free because it's called gluten FREE .... Surely this is to get a reaction out of me ? I can't believe anyone would even tell a celiac disease sufferer you only eat gluten free because they think gluten free food is free .

Also someone a non Celiac told me I know nothing about celiac disease and if I researched I will learn something . So 9 years with celiac disease and I know nothing about my own disease .

People have also told me celiac disease is not a disease but a tiny allergy or intolrence . I could go on all day about these stupid comments .

Am I right getting angry about these things or should I just ignore these comments because the people are saying these things to get a reaction out of me ?

I wish there was some way I could pass my celiac disease onto these people so they could understand what celiac disease really is . I just get so annoyed at these comments

i am a person that hardly eats cookies, i dont eat hamburgers when going out because personally i dont trust what they put in them, one time me and some close friends went out for lunch, and my son is celiac and they are all aware of that, so i got him frenchfries that they are gluten free, and some salad, and i ordered for me the same thing, they all started asking why dont you order burgers, or something else, but i told them that i dont like burgers (so they dont start trying to convince me to eat in that place and that they know what they put in the meat and so on, so i said that just to avoid and argument). The next thing i know while we were eating my son told me that he wants a hamburger so i told him that they are yucky, after all he was at the time only 30 months old and he doesnt understand if i tell him that they are not good for him, but if i tell him that tthey are yucky he wont ask for them again, so all of my friends started telling me "if you dont like something it doesnt mean you cant give it to your son".. I was so mad I was like "WHAT?" and they all know what his problem is, so i told them again that he cant have anything with gluten in it, so one of them said "i am sure that the cheese burgers dont have gluten in them", so i told them that the bread has gluten, and how it makes him sick, anyways, i was pregnant at the time, o i had to go to the lady's room, so i left my son with them for about 3 minutes and then we went home, that night my son kept crying, very bad diarrhea and vomitting , so i called one of my friends and she said that she had given him a piece of her hamburger just to see if anything happens to him but nothing happened so she gave him another piece.... i was so mad and started yelling telling her that my son is sick because of her... needless to say i dont hang out with any of them any more.. i mean you dont believe someone has a problem until you put them to a test????

Wow that's terrible I can't believe people can even do such stupid things .

This week I heard a lot of bad comments . Including i'm uneducated about my disease when this person doesn't even have celiac disease , I wish I had a gun to shoot that person !

Did anyone from the UK see this - Open Original Shared Link

It's a disgrace . This bothers me a lot.

The NHS does not provide food on prescription for other groups of patients whose diseases are associated with, or affected by, the type of food they eat. ?For these reasons, we are considering whether or not the local NHS should continue to provide NHS prescriptions for gluten-free foods.?

All I can say is WTF

This was a comment from the article . There's SO much more gluten free choice available nowadays, so no need to have free prescriptions. / This is from a non Celiac who knows nothing about celiac disease , what a stupid person , how can a non celiac advise someone with celiac disease.

It sounds like most coeliacs need nutritional advice and guidance, and help on how to make interesting, varied and affordable meals, not a regular presciption of boring gluten-free stodge. - Yet again a non celiac clueless person trying to give people with celiac disease advise .

ook how much money the NHS, could save... If these people got their own FOOD!! - I better not say what my response to this is or I might get in trouble .

It's a joke 'm so pissed off . I also read celiac disease should be down graded to an intolrence WTF

I received a pamphlet to send to my sons school as he is starting kindy this year. And in it it states that consuming gluten is "never life threatening", as some of you know my reaction to eating gluten IS life threatening. And It makes me so mad when I read stuff like that from the people who are supposed to know all about it! Am I over reacting? I know its not really common or anything, but my life is very important...to me. And I hate when Coeliac is minimised like that, don't they know that when they say stuff like that people in cafes think things like "doesn't matter if they get a little bit" blah blah.

I am totally over reacting aren't I? Should I say something to them? That it can cause fatal reactions in some people?? What would you do?

You are NOT over reacting . celiac disease is never taken seriously and it's very frustrating . Some people need to research and research again before writing wrong information

Yeah, it really is ridiculous that doctors don't know anything about it, especially with its prevalence. I hope that changes in the near future.

Just as a quick point, you might want to look up calcium and milk. Most new research has indicated that milk actually leeches calcium out of your bones, causing osteoporosis. The link between milk and bone health has never really been substantiated. Cultures that don't drink milk have stronger bones and almost no osteoporosis.

Here's a nutritionist talking about milk:

Open Original Shared Link

Thanks for the video and info on dairy . Because my vitamin D was low I drank a lot of milkshake as the milkshake powder had a lot of vitamin D and calcium from the milk . So maybe I don't need the milk

How long did you do the elimination diets? My understanding is that it can take a year or more to heal your villi on a vigilant elimination diet. Not to be knit-picky, but if you've "tried dairy", which it sounds like you may have done on more than one occasion, you are essentially starting the diet over again as even the tiniest bit could be causing substantial damage. I would try a 100% elimination of dairy and probably soy for at least a year before deciding it isn't working. Results can be slow and if more than one food is bothering your intestines, results can be even slower.

Me and my sister are having similar problems with not getting better on the gluten-free diet. I am currently on a whole foods diet (minus gluten, dairy, and caffeine) and she is on an elimination diet (eating no corn, rice, gluten, dairy, fruit, or nuts). It sucks and it's hard, but I'm afraid it may be the only way to solve the problem.

I never trust what any medical people tell me about food. I had severe stomach aches and diarrhea on a near daily basis from birth. I asked about my stomach problems at my check-ups every year and me and my parents were told "it's just nervous stomach", "she'll out grow it", etc. Nervous stomach? I don't think I had a single solid BM for the first 19 years of my life! I self diagnosed at 19 and had to educate my doctor about Celiac. She still knows almost nothing about it. When my sister developed similar symptoms to mine, she tried to convince my parents it was a communicable disease and had her tested for everything under the sun. We had to demand allergy testing and a scope.

My point is, I would never trust what a medical person says about food intolerances. I would read all you can on here and describe your symptoms as best you can. The people on here really know what they're talking about. Most medical people, sadly, don't.

1 month off potatoes that was a wate of time lol . Dietican said 1 week off dary but I ended up doing a few months off dairy . And I have again been off dairy since october I ate some at xmas and it didn't make me any worse . I don't want to do a year off dairy unless I had too because I really need to get back on milk for the calcium . There is no damage in my villi it's all healed .

Hopefully it will solve your problems , gluten free diet is annoying enough having to take out other foods is not right I read a lot about taking out other grains etc I think it helps some people.

Sorry to hear about your doctors it's ridiculous how little they know about celiac disease . I recently got hold of this ebook called Textbook of Pediatric Gastroenterology and Nutrition it's 800 pages and costs

Many of us have other food intolerances.

I haven't improved much on the gluten-free diet and have noticed I'm reacting to soy in a big way. I was just re-scoped and was found to have a lot of damage still in my villi, even though I'm am hyper vigilant about not consuming gluten. It turns out other food intolerances can cause villi flattening too. Maybe you've developed one of these in addition to gluten?

Someone recently posted a report about lectins in foods and it was an eye opener for me.

Open Original Shared Link

Thanks for the link I will take a look . Sorry to hear you still have damage in your villi . I had my 2nd endoscopy in Dec 2010 and my villi was fine my doctor did extra tests on the biopsy as he wasn't happy with the doctor who did the endoscopy's report , he said my villi showed signs of regeneration but when my doctor did some extra tests the villi was fine the endoscopy doctor just had a not very clear way of reporting results . If I had food intolrences that would have shown inflammation in the endoscopy as well ?

Well, Celiac is known to cause problems in odd places. I don't see why other conditions (especially autoimmune) can't do the same.

Are they testing you for autoimmune conditions or conditions related directly to the stomach and back?

I'm sorry you aren't improving. Its exhausting to work so hard at feeling better, only to have it not work.

I'm wondering can celiac disease still do damage even while on the diet because the disease is still in the body . I wrote about the stomach and back tests in my other reply to your post

Ditto!

People get sick and our bodies fall apart as we age & none of it has to do with gluten or no gluten.

I started getting other health problems a few years after being diagnosed with celiac disease my back problems started when I was 17 it's not the normal age to get chronic back problems ?

I'm sorry. I understand what you're going through - though in reverse. I was dx'ed with Hashimotos about 7 years ago and meds helped for a while but then it all crashed down from 'ya know - gluten.

All those weird ubresolved Hashis symptoms - gluten.

Seven years of my body being torn apart from something else - leaving me with lots of damage.

So yes, you very well could have another issue (related or not) to Celiac (autoimmune or not).

Have you told your doctor how you feel? Have you been tested for other autoimmune conditions? Have you tried eliminating other foods, as the previous poster suggested?

Sorry to hear about Hashimotos and the damage

I tried elimination diets and been working with a dietican. In 2006 I was tested for ankalosing spondylitis and lupus , apparently I tested positive for the gene and had something showing up in an x-ray to show I had ankalosing spondylitis but 1 week later the doctors said they had read the results wrong . I tested positive for the same tests again in 2008 again , doctors said It's possible to test positive but not have the conditions . Than last year I did the ankalosing spondylitis with my new stomach doctor it came back negative . Every test the doctors do is negative . Which is good but doesn't help me get better .

The gluten free diet will only solve medical problems related to consuming gluten in the first place. It's possible you have medical conditions completely unrelated to eating gluten, but that doesn't reflect badly on the diet as you'd surely be worse off 9 years later if you kept eating gluten.

It's possible you have other food intolerances. I have been gluten free for over 2.5 years and I felt great initially and then my health started to decline again. I am currently experimenting with eliminating other foods that could be causing my symptoms. I am starting with dairy and I recommend you do the same. I believe the majority of people with Celiac disease have some sort of sensitivity to dairy.

You could also try a whole foods elimination diet, where you only eat foods in their pure form and cut out all the major allergens (gluten, dairy, soy, peanuts, tree nuts, shellfish).

I'm sorry you're not feeling better. I'm kind of there too and it really sucks.

Thanks for the reply and advice . I have been working with a dietcian since 2010 he doesn't think I have any food intolrences as we have done many elimination diets . There is 1 more elimination diet I have to do because last time after doing half the diet I got a urine infection and needed tablets that contained a food I was avoiding on the elimination diet . I have cut out dairy and it's helped a little but if I try eating dairy the pain gets no worse but I have trouble sleeping so I think dairy has some negative effects on me .

Probaly I am better off on the Gluten Free diet but we miss out in a lot of nutrition from gluten so maybe not . If I have stomach pain on the Gluten Free diet I might as well just eat gluten and have exactly the same symptoms but can eat whatever I like . I know that would be bad for my villi but there is no point being Gluten Free if still makes me ill

About medical problems not connected to celiac disease I think that could be possible . But I have seen doctors about back and stomach problems and they never find anything . The only thing that was found was a vitamin D deficiency .