No one denies lactose intolerance but most people look at me like I have 2 heads when I explain to them that I can't have gluten. I even had someone tell me last week that I was mistaken, I was too old to be gluten intolerant because it was a "child's disease" and I would have known it before now and NO ONE gets diagnosed in their 30's.

I explained that my friends stepfather was diagnosed Celiac at age 70 and I have another friend who was diagnosed at 52. Again I was told I was mistaken, they must have Crohn's disease. I tried to use the situation as a teaching moment but she basically told me I had no idea what I was talking about and she should know because her father is a doctor.

Oh and my mother insists on describing her wonderful lunches of chicken salad on croissant and the most marvelous key lime pie with the best crust ever. She's never been known for compassion and sympathy but for the LOVE OF GOD stop with all the gluten-laden food descriptions already! Honestly, the stuff makes me so sick that I don't even feel jealous, but I don't understand why she is such denial over the whole thing.

Does anyone else have people react strangely about the whole gluten intolerant/celiac thing?

Not usually, but my mother told me I was "crazy" when I told her I thought I had Celiac and was going to be tested. Apparently in her world, "no one" has Celiac.

I usually take the easy way out and say "allergy to gluten" as opposed to explaining Celiac. People seem to "get" allergies. I say it's a severe allergy, like a peanut allergy, and they seem to understand.

Granted, some people with Celiac HATE having to correct people who mistakenly think it's an IgE allergy, but since I react so severely, this works for me to get the point across. Usually I am in a restaurant or at a party with food when I have to explain.

Just like I HATE having to explain Type 1 diabetes (the severe kind that ALWAYS needs daily insulin for life, is usually diagnosed at a young age, and has NOTHING to do with diet, weight, exercise, sugar, etc.), and correct myths since people only know about the common form of diabetes caused by poor diet and obesity (Type 2 diabetes), I just avoid the topic all together. I say I have "autoimmune insulin deficiency" and leave the word diabetes out. People in general either CAN'T understand diseases, or don't want to make the effort.

Using the term "allergy" for Celiac works best for me!

As to the "why" part of your post. My theory is that there are so many fad diets that any unusual dietary routine gets lumped in with those.

I figured it out at age 52. My mother, who undoubtedly had celiac disease all her life, died of liver cancer at age 66 and was never diagnosed. Many here suffered needlessly for decades because of ignorant doctors. Some people just choose to be ignorant.



No doubt he is one of those ignorant doctors we all love to hate! And of course, the apple doesn't fall far from the tree.



Have you let her know that it is hard enough to avoid temptation without her describing the foods you can't have in great detail? She may not be aware that it is hurtful to you. Once you let her know she won't be able to plead ignorance any more.



Well, my family will watch me like a hawk and accuse me (falsely) of cheating, but they are not willing to help me stay safe by cleaning up their own crumbs etc. I finally threw out all regular flour, so they can't bake things any more with it when they think I am not looking (the dust in the air makes me sick). So, even though I haven't encountered people doubting my diagnosis, they don't believe me about the cross contamination issue (it is too inconvenient for them, poor dears ).

I have the same problem. My mom is starting to see the effects. (Once she saw how quick a reaction can happen she kind of backed off.) Although she says replacing all the plastic in my kitchen isn't important. My best friend got married this weekend so there was alot of eating out this weekend. Her mother told me point blank that she didn't want to hear about my problem. She yelled at me once for not helping my friend with something and that friend and her husband went to bat for me and said it was more important for me to get something to eat while I could. It is a lonly feeling when no one understands. I'm finding that I'm slowly getting over it. My families reaction to this is no diffrent then thier reaction to other things.

Just a suggestion, but Mary Tyler Moore has always had diabetes (type I?) for years...and tell them "guess what!" she wa always slim and a dancer (I believe I heard that she was a professional dancer before she did Dick Van Dyke show). So there, it's not diet, weight, exercise, sugar etc.

Good call! Halle Berry, Gary Hall Jr. (an Olympic gold medal swimmer), and one of the super skinny guys from Audioslave also are Type 1. And I doubt no one would say any of them are out of shape!

Brett Michaels from Poison (what a bod! ) and Nicole Johnson Baker, a former Miss USA, are also Type 1. Brett since he was 6.

It just drives me crazy when people suggest the "atkins diet" to me or think my mom put Coke in my bottle. They can't get it that Type 1 diabetes is the exact same type of disease as MS or Lupus, and I doubt anyone tells THOSE people they got the disease because they were fat and/or ate "too much sugar". I always hear "but you're too thin to have diabetes", even after I explain that yes, Type 1 diabetics *are* usually thin, and yes, it is *usually* first diagnosed in children, so no, it is not odd for me to have it so young. So now I just say "genetic diabetes", I was "born with diabetes", or "autoimmune insulin deficiency".

It's the exact same type of thing, having to tell people that YES, adults have Celiac too! For the record, Gemma Kidd the model and make-up artist, has Celiac, and I am quite sure she developed it as an adult.

After being disabled for 9 years with CFS...MS...doctors don't know - I've learned something about people. Mean people are mean no matter what your state of health is. It just gives them an opportunity to express their meanness. In my opinion, it all boils down to the fact that certain personalities expect you to do things their way and to always accommodate and please THEM. ANYTHING that gets in the way of you and others doing things their way is up for attack.

My illness has become my greatest tool for discerning the kind of person someone is. Someone who is kind will NEVER treat you that way. So the point is, I stopped trying to "get them to understand." They never ever will because they don't want to. If they understood, they couldn't continue to demand you do everything their way. Those who DO understand, are quick to understand, it isn't like pulling teeth. I am able to figure out quickly those who want to understand from those who don't. And if they don't, I don't waste energy TRYING to GET them to understand (how exhausting that has been for me). I do what I need to do to take care of myself and politely keep them as far away from me as I can. I give myself PERMISSION to let them be offended. I learn who they are, I plan ahead that they will be offended by me, and I brace myself for the discomfort of it. It is very hard because I tend to be a people-pleaser, but my survival depends on it.

Oh, and this is funny...at one point my doctor diagnosed me with MS and I said, "I'm so relieved now people will understand!" He giggled and said, "No, my wife has MS and we just got through going to a convention where the topic was "How to get people to understand." When I started telling people I had MS, not CFS, there was no difference! People still continued to ask ridiculous things of me and totally NOT GET IT! I guess there is no politically correct invisible chronic illness. Jerks are jerks no matter what.

Micah

At the risk of sounding like George Carlin, the world is unfortunately filled with stupid people. I also say this with the knowledge that I often do stupid things, but I do try to own my stupidity.
I also use my disease as a litmus test for friendship. I give people the benefit of the doubt on the initial stupid reaction (my favorite thing being "Oh wow that sucks!" as if was completely unaware of how difficult my life is), but how they deal with my disease is how I judge whether they are worth being around. The worst are the people who act put out about it. Like I'm somehow making their life worse on purpose with my requirements. To them I say "bite me".
Luckily the family members that are stupid about my disease are ones I only see once every few years. Everyone else at minimum does not accuse me of making it up. As for friends that didn't deal with it well... they aren't my friends anymore. It wasn't worth my time.