Grrrr....

[debmidge]

I agree with you Sally - women are more likely to go to doctor before a man does. At least that's true with my celiac husband.

Someone in an earlier post mentioned that the question of "what happens when you eat gluten?" when posed by a non celiac question should be left to the imagination of the person asking.

Before I understood celiac I wish I could have known that answer as then I would have "connected the dots" and figured out that much sooner that my husband has been misdiagnosed for 25+ years.

He was a "classic symptom celiac" that 4 gastros over 20 years misdiagnosed. I was reading about celiac sprue about 4 years ago in the Mayo Clinic Family Healthbook and it mentioned celiac, but no real details, it just contrasted it with "tropical sprue."

I mentioned to my husband "Hon, maybe you have this disease?" He read the small strip of article and replied, "No, I an digest wheat."

But the article didn't really give the full picture of celiac disease and since I didn't have access to a computer back then I didn't have the opportunity to research it. Had I known someone with celiac disease I would have asked them for the full story. Hence my feeling is that when someone asks "what is the reaction to celiac?" they should be told. My husband and I usually reply "It's like having a bad stomach flu." as a short answer.

As to stupid comments, I recently was telling a co worker that we have reduced visiting my mother in law and having Friday night dinner with her because she can't cook anymore (she's 84 and is house bound too. Her cooking days are over and my sister in law will cook for us all on Fridays, but except in Summertime - long story....) (We'd go there to cook but can't get out of work early on a Friday). Anyway, my co worker, who has heard me talking about celiac disease asks "Well, why don't you go there to visit and get a pizza delivered?"

I believe these kinds of answers are truly meant to help, but it's a matter of brain is disengaged from mouth (no cognitive interaction given to the response). So I reminded her that normal pizza is made of wheat (not even to mention that my 84 yr old mominlaw can't chew pizza at this point in her life).

[ianm]

I am of the male gender, went to lots of doctors who were useless and I can cook. Surprisingly the people who don't get my disease are women. Many times the men want to know more and the women don't want to hear any of it and don't believe such a thing is possible. It seems like most of the men I know are into healthy lifestyles and the women only eat processed junk food. Must be something in the water here.

[drewsant]

I really haven't had any stupid comments yet. But there are a lot of people who have no clue what "gluten" is. I have a friend who is a nurse, and I eat at their house a lot, probably once a week. She is really good about asking me if I can have something or not. I've explained to her that I can't eat anything with wheat, barley, rye, or oats. So one night she said something like "oh I made corn for the vegetable, but you can't eat that can you?" (I'm thinking corn isn't wheat, rye, barley or oats is it?) My mom has done the same things. For some reason, people lump corn into the wheat, barley, oats and rye. And I don't want to sound rude or irritated when they say this, but it's like "DUH!"

On the upside however, almost every 3rd or 4th person I tell about this, says they have heard of it, or know someone that has it. Small world.

[cmom]

My mother-in-law and her sister (husband's aunt) have Sunday dinner quite frequently. This past Sunday, his aunt invited us. They all know I have celiac. But it's always the same, no matter how often they're told. Some of the things she fixed were dinner rolls, noodles, peach cobbler, and brownies. Once again I was asked if I would like any of the above. Then it's, "are you sure you don't want any?" YES I"M SURE!!!!! I guess they feel if they don't offer it, they'll be considered rude even though they know.

[Emme999]

I am of the male gender, went to lots of doctors who were useless and I can cook. Surprisingly the people who don't get my disease are women. Many times the men want to know more and the women don't want to hear any of it and don't believe such a thing is possible. It seems like most of the men I know are into healthy lifestyles and the women only eat processed junk food. Must be something in the water here.

<{POST_SNAPBACK}>

Wow Ian. You have no idea how much I'd be willing to pay for a bottle of that water..!

- Michelle

[scotia]

I had someone ask me (repeatedly every time I saw them...) usually with a beer in their hand.

"Are you still off the beer...???"

I said "Yes..."

"Oh, I couldn't do that...!!!"

I felt like saying "OK Einstein...the alternative is...you get sick, perhaps go into anaphylactic shock...and eventually expire..."

However, I just smiled knowingly and walked away.

Needless to say I avoid people who don't 'get it'...or are 'seemingly' too stupid to remian in the gene pool.

All my friends like my cooking, cookies etc, and when they find out it's gluten-free, they're amazed, as they figured it would be some weird tasting concoction, from the planet ZWEEBO...or wherever.

They're more to be pitied, than scolded.

Scotia

[tarnalberry]

Sigh... My coworkers aren't mean about food things, but I've been having a little pity party in my head over the food issue (there's been so much focus on eating out in social occasions that I haven't had the opportunity to prepare for recently) and today, in a meeting that had lunch brought in, a coworker said "what is it you can't have again, everything?", I sighed and said, "wheat, barley, oats, rye, and dairy", and he said "oh, everything that's good". I know all of us have been stressed out and working 60-100 hour weeks, but that just means I'm less able to handle the comments myself... sigh. I know he didn't mean anything, but I really just wanted to smirk back "yeah, I can't eat anything that's good for the rest of my life, sucks to be me, now stop reminding me, eh?", but opted to just remain silent, and hungry.

"come on and join the pity party in my head. it's a real hoot I tell ya... a real frickin' hoot."

[thomas3000]

Hi everyone,

I know how you feel!! My family would bust my chops about what I now eat. Let them eat there frickin donuts and other sweets. Do you really think our bodies can handle this stuff anyway?. What they don't know is that they're gluten intolerant as well. I know this cuz everyone with northeastern european heritage is to a certain degree. I don't have celiac cuz i was able to find a doc that diagnosed me with subclinical gluten intolerance(no abdominal symptoms only mental). I have been blessed to find this out because most will be sick for years before they're correctly diagnosed. I basically have an intolerance but it isn't as severe as celiac patients. I was on my way though. I loved pizza, pasta, sandwiches, I basically ate what I wanted, (lots of fast food). I did have some emotions about others eating what they want but i'm over it. I don't give a rats behind anymore what other people are doing , including my family. I found the root cause of my panic, anxiety, severe depression, fogginess. It hasn't fully went away because I found out that I have parasites and an h pylori infection. Im going to treat with meds and actually requested meds that don't have a gluten filler in them. Stick up for your rights, I haven't had any resistance at restaurants. Food intolerances are becoming more known..We're in this together, and don't take what others say personally. If someone says "this is so good, but oh you can't have it", think about what they're doing to there bodies. They're damaging there intestines with every bite. I used to laugh at a buddy of mine who would order a salad at Hooters, and of course I would get the breaded wings. My view has since changed. Stay strong everyone!!!!

[phakephur]

"Are you still off the beer...???"

I said "Yes..."

"Oh, I couldn't do that...!!!"

Generally when somebody tries to rub my nose in the diet by telling me they could never give up a certain food, I'll say something like "You never know what you can do until you have to. But if what you say is true, I feel bad for you because if you ever have a health challenge that requires some self discipline on your part, you're screwed."

[ianm]

All I can say is that my improved health has given me more vengeance upon the idiots in my life than anything else. I have an earlier post about an idiot coworker and a jelly donut. Now my ex did domething stupid that has backfired for her.

About a month or so ago an Extremely Attractive Freind (EAF), single too, of my ex told her that she saw me riding a bike and was amazed at how much weight I had lost. My dopey ex said it was the result of some stupid psychosomatic disease I thought I had but couldn't remember the name of it or what it involved. Not hard to see why we're not married anymore.

The EAF called me (much to my surprise) and was concerned about this disease I had and wanted to know more. I said it was celiac and as long as I don't eat grain I am fine. The EAF knew what celiac was and we had a good conversation about many things. The EAF told me she had just bought a new house and wanted to know if I would come over for dinner. Never, not in a million years, did I ever expect to hear that.

To make a long story short we have been dating ever since. My ex is furious about it but if she would have kept her mouth shut none of this would have happened. Many of my other former detractors cannot understand what a hot babe like that would want with me. I can't quite figuire it out either but I'm not complaining.

The moral of the story is do not despair if you have celiac and can't eat some of the foods you used to eat. Your health and life will improve and become much, much better than it is now. I used to be an overweight loser with no future. A simple dietary change turned all of that around.

Take care of youself and live life to the fullest because living well really is the best revenge.

[thomas3000]

Amen to that Ian.. That's a great post. I have had some resistance to this. This is not a diet. We are simply eating healthier than most, and it makes them jealous. To be able to find the root cause of an illness is a tremendous accomplishment. I'm not even going to test to see if I'm gluten intolerant. I know I am through research and a functional medicine clinic I have been working with. I am a very blessed person to be as stubborn as I am, because I totally stayed away from psychiatrists, regular docs, and anti-depressants. I know after visiting 5 docs for my symptoms and getting 5 different diagnosis', I was heading down a dark and lonely path. The more I read the more I realize that the gliadin molecule is killing people left and right, and those it doesn't kill suffer from mental and neurological issues. Members of my family suffer from panic and anxiety and severe depression. They won't even consider cutting gluten out of there diet. I also take omega 3's knowing that my ancestors consumed fish fat often. My aunt and uncle both take numerous meds for all the side effects of eating gluten causes(hypertension, panic, anxiety, depression, reflux, high cholesterol), should I go on? I know we love cookies, cake, and ice cream, but our bodies don't like it at all..It sees it as a toxin and the immune system fights until it has had enough. Hence, the debilitating symptoms come into play. Love the way you're eating because you're truly reversing serious health issues!! Good luck to everyone.

[Janelson]

My boss the other day came up with a peice of double chocolate cake from a celebration they were having downstairs for a co-works b-day and said "hey you want some... oh wait never mind you dont eat anything" then another girl goes "Alls she eats are fruits and Veggies thats why she is skinny" I wanted to say hey you try eating all the foods you love til one day one doctor says no more and rips them away. I didnt I just smiled and went back to work with my mouth watering over that cake!

[skbird]

These are great stories - I really like Ian's... very cool! That must have been a great moment!

OK, so I'm guilty. Last weekend I met up with an email friend who lives locally. We were talking about food problems, and she said, "I have one allergy - I'm allergic to artichokes!" My eyes got huge and before I could even realize what I was saying, I'd said "Wow, that would kill me!" I mean, that is a serious one, I love artichokes beyond belief. And here I am with my thousand food sensitivites telling someone with ONE allergy that it would kill me to not be able to eat artichokes.

We had a good laugh about that. Fortunately, she is a psychologist, and found plenty of humor in that. Maybe I am more sensitive about the idea of losing any more foods than I already have or something.

Talk about the pot calling the kettle black!

Stephanie

[scotia]

At the 'risk' of being labelled sexist...

Ian...you ARE the man...

Great post.

Karma works dude...Your 'ex' with her negative and judgmental attitude is getting what she deserves.

Congrats and Good Luck with you EAF.

I too was marreid for many years, now divorced but recently engaged to the Greatest, most understanding Girl in the World.

My girl makes me gluten-free cookies, bread and cakes...she has taken to the gluten-free diet like a Champion and she loves the fact that it's a healthy diet.

"Amen" Indeed Ian.

Scotia

[ianm]

Thanks guys, I knew you would like that story.

It is so true about karma. I always try to look for the good in every situation and am not ashamed of my celiac. I have had three people ask me about celiac this week. They have all gained lots of weight and feel like crap. They noticed how much I have changed and always refuse bread, cake and donuts and don't care if anybody gets offended.

Even in the worst of times you have to remain positive. It takes a long time but eventually you are rewarded for your efforts exponentially.

[Guest ~wAvE WeT sAnD~]

Ian--

You are definitely the man!! I hope that everything works out with the EAF--don't worry about the EX--they all stink!

[otnemem]

There's a woman that I work with who is always quick to remind me that she could never eat such a restrictive diet because she enjoys eating too much. She says, "I would never do it. I'd just deal with the effects of it." She doesn't understand how offensive this is, but in her defense, I think it's tough to understand. So I have a new warning to anyone who feels the need to constantly reiterate that they could never survive on the diet, or makes dopey faces at me as I explain to the waiter the things I can't eat. I just say, "Maybe I should remind you of what happens to me if I eat gluten." If they know me at all, and know what I've dealt with for the last year, the initial mental image is usually enough to shut them up. But sometimes listing a few effects of the evil protein is necessary to really get them to wave their hands and say, "Okay, okay, stop."

Incidentally, I'm a very angry and vengeful human. Reading this thread made my blood boil.

[PicturePerfect]

I get mad at people who forget that I have celiac disease and ask me if I want a cookie or something. I mean I know its not their fault, but I guess you could call me a sensitive person and that just gets me ticked off.

Lisa

[CaliGirl]

Dealing with insensitive people can be done.... you just have to train them! My coworkers used to offer me donuts, toast, and bagels all the time. I worked there for a year, and on my last day, they threw me a breakfast potluck.... of nothing but fruit! It was great. Cherries, watermelon, grapes, pineapple, all so yummy. I'm advocating celiac awareness, one office at a time!

By the way, IanM, you rock. So true, living well (and healthier, and happier, and longer) is the best!

Rachel

[Nevadan]

What a great thread!!

And then there are those of us who are "ONLY" gluten sensitive (and casein sensitive) [gluten gene = double DQ1 subtype DQ6]. Try explaining that you are concerned about all the "potential" neurological and autoimmune diseases related to being gluten sensitive and continuing to consume gluten when confronted with glutenous food choices. Never mind that I'm male and was diagnosed with osteophorosis at 55 ("you should drink more milk") and have been borderline anemic all my life ("you should eat more meat and bread") and have mild pheripheral neuropathy (neuro what?).

My most overt symptoms cured by going gluten-free were bloat, gas, and chronic constipation, all which can be tolerated, however uncomfortably, as opposed to those of you with celiac and the dreaded D. But to me it's not worth the pain. The jury is still out as to whether the osteo and/or anemia is gluten related, but I'm optomistic given that genes are what they are and since both run in my family.

After trying to explain this "gluten sensitivity" to friends it's not uncommon to hear:

"You don't really need to be on THIS diet - just take a Tum's"

"Don't worry, if you eat more bran, the constipation will go away" [Doctors favorite suggestion]

"Why do you want to eat gluten-free, we all have our "allergies" and we live with them."

Fortunately I find the gluten-free "diet" very good. Being retired I don't have to deal with the workplace anymore which I know would be most difficult. When I discovered gluten sensitivity I also learned that my wife's and my eating habits were already about 90% gluten-free so the transition was relative minor, thank goodness. I sympathize with those with active social and workplace lives to contend with, but remember, it's your body and it's your call.

George

[elonwy]

I had my first really horrid reaction ( besides the bakery episode with bf's mom's bf) this last weekend. I was at a bbq my boss does every year, that itself was cool, the cook she hired was actually gluten-free and made me little seperate food in tin foil on the grill that kicked butt, and my boss actually called me that morning to read me the ingredients to the salsa she bought to make sure it was ok.

But anyway. I'm in the pool and a co-worker is sitting on the edge with his wife, and we're talking and he says something to me about gluten and she asks what are we talking about.

I explain Celiac disease very briefly, and she starts to say, REALLY loudly " Oh MY GOD, You mean you can't eat cookies, or cake, or bread or pasta? That's just terrible, I could never do that. And cereal, and pie.." and procedes to list more food, on and on.

That's the first time someone has completely crushed me in public because of this. The cool part is, everyone around her was absolutely appalled at her reaction, and I just shrugged and said, "it's really not that hard" and swam away, but I'm still mad at her. People can be so fing self-centered.

Not that I'm an angel but sheesh.

aaaahhh I feel better now.

Elonwy

[bratcat]

My husband doesn't understand this whole celiac thing and often gets frustrated with me when I can't just eat a sandwich like everyone else.He doesn't like for me to keep saying "I can't eat that".He just can't see why the very thing that kept this country alive(wheat) can hurt you.He told me the doctors are full of "it",that everyone has eaten wheat since time began,so why is it so bad now.Good question.

[elonwy]

We haven't been eating wheat since time began. Wheats been around for about 10,000 years, and has only been in western Europe for about 2,000 years. As far as evolution goes, thats not exactly a very long time.

Open Original Shared Link

It seems like a really long time but genes just don't change quickly.

Elonwy

[skoki-mom]

Well, I guess I am lucky in many ways because I am a nurse, so all of my colleagues have at least heard of Celiac Disease! Unfortunately, the staff room is always full of food because we always seem to be celebrating something around there, or else the parents of our patients send food in for us. As well, we have tea at 5am on night shift, which usually involves baked goods and has been my night-shift life life for the last 14 years, lol! Anyhow, most of them are pretty good, and the questions I get are typically intelligent and most of them genuinely want to know about the condition and what it involves. Even though I have spent a good deal of time feeling grief over the loss of a lot of my favourite foods, I am really aware of how lucky I am in many ways. I work with sick babies, and some of the stuff these kids and their families have to deal with would make your hair stand on end. I don't mean in any way to minimize anyone's suffering, but if I have to be saddled with a chronic illness, I'll take this one over many others I've seen!

((Hugs)) to all, sorry some people have to be so insensitive!

[ianm]

My husband doesn't understand this whole celiac thing...

<{POST_SNAPBACK}>

My ex-wife didn't get it either and that is why she is an ex. It just wasn't worth jeapordizing my health by keeping her around.