Gluten Gluten Everywhere

[Indiana Joan]

I went gluten-free in March and now I'm feeling better in so many ways. I'm still learning as I go and this forum has taught me more than anything else, especially about the wide variety of obvious symptoms from gluten intolerance.

My problem is that I see people all around me who are obviously gluten intolerant. I try not to say anything but sometimes I just can't keep my mouth shut. I only want to help though, and I only bring it up to close friends and relatives, not everyone I talk to.

Well, each person I told so far has blown me off like I'm nuts. There's "nothing wrong with them, they just have a backache" or "migraine" or "asthsma" or "diabetes" or "fibromyalgia" or "they've been this way their whole life." Moreover, their doctors would have told them OR they've already been tested for it and the test was negative. I only want to shed some light to help them but you can lead a horse to water but you can't make him drink, right?

Like the other day one of my obvious-gluten-and-dairy-intolerant-friends said to me, "Why do I carry all this weight up here (abdominal area) and why is this weight so hard to lose?" My reply was, "It's inflammation and bloating, not fat." She looked puzzled.

What I'm getting at is that I really think this gluten problem is far more widespread than anyone can imagine. A lot of times "us people" who don't eat gluten feel so isolated, when in fact I think the only way we're isolated is that we understand a food substance is the cause for all our unrelated health issues while others have no clue or are in denial.

Honestly, I think it's just a matter of time before thousands more jump on the gluten-free band wagon. Look at where we are today compared to ten years ago! Who would've thought?

[Skylark]

Two things. First, everything does not boil down to gluten intolerance. I was seeing it everywhere too, but there are plenty of other food intolerances like soy allergy, casein sensitivity, and fructose malabsorption that are under-diagnosed as well. I have one friend who eats wheat perfectly fine but gets symptoms a lot like mine if she eats soy or nightshades. I do think that as we understand gluten intolerance better, we will realize that it is not a good thing for people with DQ2 or DQ8 genes to eat, which is a much larger proportion of the population than the estimated 1% celiac.

The second thing is that all you can do is plant a seed. The though of "normal" food like bread making someone ill is so foreign to many people that they will laugh at you. Push hard and they'll say you are crazy. Remember though, that you are setting an example. I don't suggest other people might be gluten intolerant any more, but I'm very open and relaxed about my celiac disease. I've had quite a few times now where people suddenly start asking me a bunch of questions. It turns out they suspect that they are gluten intolerant.

[WheatChef]

There is actually a well documented tendency for humans to start attributing new diseases they've learned about onto their own symptoms or the symptoms of those around them. It's called Medical School Syndrome as it is very common in those going through medical school, as well as those in the psychology field. I know it certainly can be desirous to find other people who are just like you once you've gone through something significant. It does sound however like you might be at risk of alienating some of these people. I have no doubt that the only goal of yours in sharing this information with your colleagues is to help them but if you push too hard you could end up closing off their mind to the possibilities of what you're saying. I've found the more casual you can be about these sorts of matters the more people will listen. Diagnosing people in the middle of an elevator ride for example would not be casual and could end up putting people on the defensive, casually mentioning a symptom of yours that you know from previous experience is somewhat similar to a symptom of theirs (but not even bringing up or hinting at their situation) can get people to start thinking about it.

Skylark's example is excellent, provide yourself as a potential source of info for when they finally want to ask question about it and you could help many people help themselves.

[tarnalberry]

But you can have migraines independent of gluten intolerance. You can have asthma independent of gluten intolerance. You can have fibro independent of gluten intolerance. Abdominal weight carrying patterns too. You can have any ofthese without a food intolerance at all. Yes, they could be related, so it's worth checking, but it doesn't have to be.

[MagpieWrites]

The best way I've found to help those who might also have celiac is simple - Lure them to the Wheatless Side. Come, we have cookies. And they are tasty! By that I mean, I really REALLY have made myself limit my griping about struggles I face when dealing with my celiac around people. My husband hears some of it, my mom on rare occasions, and you poor folks! Beyond that - I try to stay as positive and upbeat about it. I share my goodies (I actually HAVE lured folks to diagnosis with the goodies. Two of my husband's coworkers who had thought it was possible they had issues decided after snitching his lunches off and on for a few months that maybe it wouldn't be the end of the world it they had to go gluten free. They both got tested only a few month or so ago!) and just try to be really honest about all the GREAT things that have happened since I was diagnosed.

Granted, I usually have a trump card these days. I didn't see a lot of folks for several months due to an illness and than the whole "Snowmageddon" thing that hit the states this winter - so people who knew me before are now shocked when they see me. Dropped 4-5 sizes and about 90 pounds, and I have energy! The difference is pretty... startling, and it gets folks asking what is going on.

(But really? Bribe with gluten free goodies , and the door will crack open to folks learning more about celiac and gluten intolerance!)

[i-geek]

But you can have migraines independent of gluten intolerance. You can have asthma independent of gluten intolerance. You can have fibro independent of gluten intolerance. Abdominal weight carrying patterns too. You can have any ofthese without a food intolerance at all. Yes, they could be related, so it's worth checking, but it doesn't have to be.

Exactly.

People don't generally respond well to proselytizing. I know when people are in my face with a lot of information, especially if it's something I don't want to deal with right then, I tend to push right back (stubbornness is one of my best and worst traits). However, if you mention it briefly and leave it at that, you've either started a good conversation (IF the other person chooses to participate) or you've given them something to think about later when they have time and maybe a more open mind.

[zergcoffeebean]

Everyone in this topic so far has made some interesting points. I think that it is easy to assume that everyone around you whom is experiencing something similar to what you are going through that the conclusion must be the same. Even so, I have found that most people around me, aren't interested in feeling better until it's *their* idea. Which is fine and dandy, but to convince them to get it checked out, I think gentle nudges... cookie bribery as another put it, might be a more effective approach.

I still have no idea how to approach my family about it. My mother's sister (Aunt Gail) tested positive for the celiac genes, the other test (I'm really not sure which one, but she said the antibodies were sky high), and tested positive via endoscopic examination for celiac. This was about 10 years ago. I saw her recently, and she was drinking beer after beer after beer, eating like everyone else. For the most part, her health seems good. At first glance anyway. She doesn't complain of pain or constant issues with eating. I'm not even sure why she got tested for celiac in the first place. But even with a positive diagnosis from a doctor, she could not stay gluten free. She would not. She is choosing not to. Even though I know, we know, that decision will kill her. I don't get it. Blah blah blah horse...water..

Gentle explanation, education, and just sharing your experience will do wonders for people who want to feel better. And may even sway even the most stubborn of people. That, and it takes a lot less effort than posturing.

[K8ling]

I have a friend who KNOWS she has food allergies like crazy, she is VERY overweight and constantly sick, and she's in an extremely stressful marriage. She was complaining to me one day about how hard it is to get the weight off and how she exercises allll the time (not really but I didn't say anything). I said "well what are you eating?" she said she was eating "healthy"- not veggies and whole foods but frozen processed meals and subway and fast food! I said she wasn't going to get anywhere with it if she didn't start treating her body better.

Then she said...

Wait for it...

"I tested positive for all kinds of allergies in high school but I couldn't keep track of all of them so I just stopped trying not to eat them".

?! Her mom said she was allergic to Milk, wheat, and corn! OMG No wonder she feels horrible all the time and the weight won't come off! It's swelling! Her body is screaming out for help!!

So sometimes they just are either in denial or being stupid.

[kayo]

I have found that most people around me, aren't interested in feeling better until it's *their* idea

I totally agree.

[eva-girl]

indiana joan -

if you are not a doctor you should not be "diagnosing" anyone, period. not only is it rude but it could be dangerous. how would you like it if people told you you weren't celiac but instead you had ADD or whatever? and the celiac diagnosis is not simple - it took alot of testing and diet manipulation for most of us to discover we have celiac, not just someone talking to us. obviously if someone thinks they may be gluten intolerant & asks you about your symptoms that is one thing, but they are adults and it is their responsibility to take care of themselves. just worry about your own health and let your family and friends worry about theirs.

[BethM55]

My family and a few friends have slowly gone from shaking their heads in disbelief to trying overly hard to help, to considering possible gluten issues for themselves. I've not pushed, just 'walked my talk', done my thing, and taken care of myself. It's hard not to tell someone "Hey! do something for yourself! Change your eating habits!" But that doesn't work. I do have people tell me they feel guilty because they aren't doing what I do, but I don't want that! Not everyone needs to eat gluten free. The only thing I ask of them is to accept my oddities as they are. I do what I do because I need to, not to change anyone else. If people want to see me as an example, that's up to them, and a side benefit to the work I've put in. I'm no saint, I'm not perfect, but I sure like feeling better!