Telling Others About Gluten...

[Jnkmnky]

I know people with MS, ulcerative colitis, autism, RA, and what looks like celiac disease to me... I'm sure most of you know people with autoimmune disorders and, like me, want to tell them about GLUTEN and how it may be affecting their disease. How ridding their bodies of gluten might have a postive effect on their symptoms.... Right? You all know people like this, too? It's not just me. So how many of you find your best interests being shunned, ignored, taken with offense, distrust, skepticism? Not one person I've mentioned celiac disease to with one of those disorders, looked into the gluten connection. I don't understand. What's at play here? What happens to a suffering person who won't consider even trying the gluten free diet? These same people will take drugs that have side-effects like...DEATH! But don't want to hear about a gluten free diet.... Someone help me make sense of this!

[MySuicidalTurtle]

I tell my one friend about how it could help him feel somewhat better but he just doesn't believe it.

[Lisa]

I can't help you make sense of this because I just don't know.

I do know that when I went the the GI Dr., I had never heard of Celiac Disease. I knew alot about IBS, but nothing about gluten intolerance. I was diognosed within two months of the celiac disease kicking into high gear and I am hoping that the damage was not as severe as those who have been undiognosed for many months or many years.

It is all in the education, or mis-information. You can't change peoples train of thought, you can only suggest. I know that your heart is in the right place, but those you talk to need to be open for suggestions. And if they are not, that is all you can do. They will just have to heal themselves by trial and error. You have done your best.

Lisa B.

[Canadian Karen]

I don't understand really myself. There are people I know who have so many of the symptoms, the right ancestry, etc. etc. I explain to them about my history of years of misdiagnosis, yada, yada. There is only one person who has taken me seriously and actually went to her doctor asking for the tests. When she returned from the doctor she had the testing done but she had to pay $140.00 for it (when I had the tests, I didn't have to pay for them, well, I guess times have changed....). Anyway, a few weeks later, the results came in and they were negative and I I felt guilty that she spent that amount of money.......

Karen

[cornbread]

Seems like we all have this same problem... I've even had friends ask me about the gluten issue and then say "woah, that sounds like me..." but then they *still* don't look into it. What gives?! I mean, we all miss beer, but I felt so bad that I would've given up anything just to feel better.

[skbird]

I have not been able to get either of my parents tested for antibodies, but a family friend, who is 74, was interested enough to look into her own health (history of food problems and losing weight/appetite). She had scopes and tests and aparantly doesn't have gluten intolerance (at least not Celiac) but they did as a result find an ulcer, so she's being treated and feeling better. I still think she'd benefit from a gluten free diet but at least she's getting treatment for the ulcer.

I do have a family friend with RA and a lifetime of illness and my mom has become a good advocate for me on gluten free stuff, so I keep hoping when they get together they discuss this (I don't see the friend often). And I had a coworker who gets sudden diarrhea after eating at times - meaning has to go running for the toilet all of a sudden, but he won't follow a diet without a diagnosis (which he won't get, either). Frustrating on that one.

Sometimes it seems like people treat discussion of gluten as if I had become born again. And maybe I'm aware of that so I decide not to make a big deal about it. But there are people I think who would feel better if they skipped gluten. I'm hoping to lead by example in this.

Stephanie

[Carriefaith]

I also agree that the gluten free diet would most likely improve the lives of people with autism, ADD/ADHD, schizophrenia, MS, ect. I think a lot of them probably don't know that gluten would help them, which is really sad actually. I really wish that more research and publicity would be done in this area so that more people can be helped.

About telling people to go gluten free... I think that if we provided them with enough scientific info, it may change their minds However, some people will never change and it is really frustrating.

[tarnalberry]

I think it's a couple of factors:

1. they've never heard of it, so they think you're a nut for suggesting it

2. we've been socially acclimated to thinking food isn't *that* central to our health and you're trying to tell them otherwise

3. "take this out of your diet" seems like too simple of a solution for their very complicated problem

4. they've never heard of it, so they think you're a nut for suggesting it

(yeah, I know I put that twice, because I think that's the primary thing - "it's too rare for them to have it".)

[Nevadan]

I know people with MS, ulcerative colitis, autism, RA, and what looks like celiac disease to me...  I'm sure most of you know people with autoimmune disorders and, like me, want to tell them about GLUTEN and how it may be affecting their disease.  How ridding their bodies of gluten might have a postive effect on their symptoms....  Right?  You all know people like this, too?  It's not just me.  So how many of you find your best interests being shunned, ignored, taken with offense, distrust, skepticism?  Not one person I've mentioned celiac disease to with one of those disorders, looked into the gluten connection.  I don't understand.  What's at play here?  What happens to a suffering person who won't consider even trying the gluten free diet?  These same people will take drugs that have side-effects like...DEATH!  But don't want to hear about a gluten free diet....  Someone help me make sense of this!

<{POST_SNAPBACK}>

Have you ever tried to "talk" an alcohol or drug addicted person into kicking the habit? It's usually a real no-go. Seldom can you even get them to admit they have a problem. There is some of the same addiction thing present in many people who are consumming gluten since the partially digested gluten has a very similar structure to opinoids, an ingredient in opium.

I think one manifestation of this is those who actually decide to try gluten-free but don't last but a day or two. They usually give some excuse much like an alcoholic does to justify their return to gluten. Unfortunately all the scientific evidence in the world isn't likely to help either. Maybe there's a need to learn more about the treatment of other addictions and apply some of it to gluten addiction.

Just a thought.

And then there is the issue of eating being a very emotional, irrational activity for many others. Convincing them to change their diet is similar to convincing a Ford person to switch to a Chevy - there may be good logical reasons but good luck!

George

[Jnkmnky]

Sometimes it seems like people treat discussion of gluten as if I had become born again.

Stephanie

<{POST_SNAPBACK}>

Ok. That was very funny. Tiffany- People do look at me like I'm nuts when I suggest the gluten free diet. It's more radical than Vioxx, I suppose.

[Jnkmnky]

I don't understand really myself.  There are people I know who have so many of the symptoms, the right ancestry, etc. etc.  I explain to them about my history of years of misdiagnosis, yada, yada.  There is only one person who has taken me seriously and actually went to her doctor asking for the tests.  When she returned from the doctor she had the testing done but she had to pay $140.00 for it (when I had the tests, I didn't have to pay for them, well, I guess times have changed....).  Anyway, a few weeks later, the results came in and they were negative and I I felt guilty that she spent that amount of money.......

Karen

<{POST_SNAPBACK}>

That's a tough one because you don't know people's financial situations. I'm neg for celiac and sensitivity.... but no one will ever convince my my Endometriosis wasn't real ... then disappeared after going gluten free. Then returned when I ate gluten...then disappeared when I stopped....then returned when I snacked on french bread... along with brain fog (I guess going gluten free for nearly 5 months made me more sensitive??? who knows?)...then disappeared a few days later. I'm done experimenting. There's not enough knowledge about gluten out there. We have to listen to our bodies. I have a child with celiac disease, I'm neg, but symptomatic to gluten.

[darlindeb25]

I too understand how you all feel. My sister and father both are celiacs too. So, that makes the odds that much higher for our kids. I know in my heart that 2 of my 5 are gluten intolerant. My daughter is sick a lot, she even called me last week and asked me if I thought she was allergic to corn. I told her it is time to find out if she is celiac too and she wont. She doesnt want to deal with it. My son Mike went to his family doc and told him he wanted tested for celiacs and type II diabetes (my ex is diabetic with heart probs) and that stupid doctor said, "Mike, you dont look celiac or diabetic, just adjust your diet!" Mike believed him. You can't tell by looking at a person. I am still angry with that doctor. At any rate, people take their own time making up their minds--we can only suggest. Deb

[ravenwoodglass]

I guess my experience with being vocal about celiac disease is unusual from the other posts. I worked in a store for a few months last year and was exrememely vocal about celiac disease. I had 7 people come back in to thank me because they had listened and tried being gluten-free or got tested and were positive. This may be because I live in a smaller city and people remember when I was becoming progressively more restricted in my activities and the canadian canes were hard to miss. On the downside though my Mom's family won't even talk to me. I called my aunt to tell her about the diagnosis and let her know my cousins and all needed to be tested. Well I made the 'mistake' of saying that it was the undiagnosed celiac disease that killed Mom. I got yelled at and told, 'Your Mom died of colon cancer" she hung up and hasn't spoken to me since.

Don't stop talking about celiac, even if 100 people don't listen and only 1 does if that 1 was an undiagnosed celiac it was worth the annoyance to the others. I was undiagnosed for 45 years, my chances of dieing of cancer are very high, I will talk about celiac till I draw my last breath. If someone had talked about it to me, anyone at all, it would have saved me so much pain, my children would have had a childhood not spent looking for the closest bathroom, and my adult son would be over 5' tall. Celiac is too important to not nag people about, after all the doctors won't do it.

[Rachel--24]

1. they've never heard of it, so they think you're a nut for suggesting it

<{POST_SNAPBACK}>

I agree that this is the main reason for people not wanting to listen or take the advice seriously.

I'm sure if the effects of gluten were well known you would see a change in peoples attitudes...they might be willing to try gluten-free if they actually *knew* what gluten was. I'm finding the vast majority of people think gluten is sugar.

Also alot of people have symptoms that seem "obvious" to me...like having D immediately after every meal but they've learned to live with this. Its normal to them and not bothersome so they think they don't have a problem at all. I asked someone who has this symptom if the doctor told them they needed to be gluten-free would they? The answer was no. I then asked what if the doctor told you if you *didn't* go gluten-free you would be at greater risk for developing autoimmune disease, osteoporosis, cancer..etc? The anser was "Well...then I would". Problem is none of these people are likely to get themselves tested...they don't want to know.

[jerseyangel]

I'm glad we're talking about this. My mother has suffered from C as long as I can remember. Even had hemmoroid surgery as a result. She has unexplained anemia--they do tests, but have no idea where "the blood went" (I kid you not). She has hair loss enough so that at 74, she has to wear a wig. She has trouble swallowing, burning in her face, tingling, you get the picture--I could go on. The point is, I told her that she should be tested for Celiac--I was Dx and her symptoms suggested she could have it, too. Her GP told her he "never heard of the blood tests " that I told her to ask for. I suggested she go the her gastro. and she said she'd call him and I haven't heard from her since. (We live in different states). If I keep bringing it up, she'll get defensive--I've explained the dangers of eating gluten if positive but if a person chooses to ignore the situation, there's only so much we can do. I feel guilty, though. I also have a sister who had symptons like mine for years but does not believe in Western Medicine anymore and only consults with a Kinesiologist. She eats a very healthy diet that does not include wheat and feels great--but she refuses to give it a name or give any credance to my DX. Its frusterating .

[skbird]

That's a tough one because you don't know people's financial situations.  I'm neg for celiac and sensitivity.... but no one will ever convince my my Endometriosis wasn't real ... then disappeared after going gluten free.  Then returned when I ate gluten...then disappeared when I stopped....then returned when I snacked on french bread... along with brain fog (I guess going gluten free for nearly 5 months made me more sensitive??? who knows?)...then disappeared a few days later.  I'm done experimenting.  There's not enough knowledge about gluten out there.  We have to listen to our bodies.  I have a child with celiac disease, I'm neg, but symptomatic to gluten.

<{POST_SNAPBACK}>

I have been meaning to voice my envy - it seems like my endometriosis, if that is what it is, has only gotten worse since going gluten-free... Or maybe I'm just that much more aware of my body now. At any rate, it hasn't lessened...

Stephanie

[skbird]

I have a friend with a kid who has Aspergers and ADD and every so often I bring up the gluten connection. She lives in England and I get the impression the gluten free diet is viewed differently there anyway. She knows very well how much food choices affect behavior in herself, she cannot eat certain things and is hypoglycemic. I don't know if it is the difficulty of the diet (her daughter, because of her autism, eats only certain things and they have to be a certain way, etc) and her difficult daughter, or if it just seems too abstract. Last time I sent her a link to this forum with a discussion about autism on it, she wrote back "I'm glad your gluten free diet is working so well for you." A nicely worded brush-off...

I will keep trying, though!

Stephanie

[Jnkmnky]

I have been meaning to voice my envy - it seems like my endometriosis, if that is what it is, has only gotten worse since going gluten-free... Or maybe I'm just that much more aware of my body now. At any rate, it hasn't lessened...

Stephanie

<{POST_SNAPBACK}>

That totally sucks for you. Don't be envious, though. My life is full of other crap I can't get rid of no matter how hard I try. Someone once told me that if I'm envious of another person and I really want what they have... I have to be prepared to take EVERYTHING that other person has...not just the one good thing I want. No thanks! Have you considered the surgery? I hear it helps for at least awhile.

[ianm]

I don't understand it either. My dad and brother won't really consider it even though they have the same symptoms I did just not as bad. My brother has reduced his gluten intake and says he feels better but isn't willing to go cold turkey. Even after seeing the dramatic turnaround in my health people just can't quite make the connection. I am convinced my ex-wife has it, she has all of the symptoms but refuses to consider it. Her sister committed suicide and suffered with mental illness and other symptoms all her life as did their father. I guess it just comes down to taking responsibility for one's life and for most that is just too much to ask. Everyone wants a quick fix pill. It is like being an alcoholic or drug addict. One can't or won't change until they want to.

[mytummyhurts]

I'm finding the vast majority of people think gluten is sugar. 

<{POST_SNAPBACK}>

I know! Maybe because of the term glucose. When people read ingredients and see whey, they say "Oh, you can't have this" even though whey is really milk, but it sounds similar to wheat.

[bluelotus]

Man, I really need to avoid topics like this - its depressing to consider how little people really know or care to know about things. Guess the saying is very true - Ignorance is bliss.

A lot of it too is the FDA's recommendations for "whole grains" which most people think of as wheat products. If the FDA is out there saying that people need to eat wheat (or at least, this is what people hear) - how can someone not in the health industry (assuming most of us aren't) tell them otherwise? Then there is the addiction factor - I think a lot of people are really addicted to their food (particularly wheat and dairy)......they couldn't even begin to think about giving those up b/c that would make life impossible, right??

[ianm]

I read a newspaper article this morning and it was all about the importance of eating whole grains. Of course the only grain mentioned was wheat. There was absolutely nothing about buckwheat, flaxseed, amaranth, quinoa, etc. It was wheat and only wheat.

[rock on]

i am relatively new to the "born again" gluten group , and my mom laughs at me everytime i mention it...when we get off the phone, she'll use "gluten" as a goodbye. but, she takes it seriously & i'm hoping that some family friends who have a son with autism will heed the info that i sent to them about how the gluten-free can help with some issues.

i'll keep telling people about it, but it really is up to them to be thier own advocate & listen to their own bodies. you can lead a horse to water.....

[hathor]

I think there are two things going on.

1. People want to treat their physical problems with a pill or some such. They would rather be sick than change their diet. There seems to be a strong psychological attachment to certain foods.

2. Some people think that their doctors know best. If the doctor tells them it is IBS or nothing to worry about, that's it.

It isn't just gluten. My MIL and her husband have bad GERD and high cholesterol. My husband had these things too and his doctor wanted to put him on medication for both. Instead, dh changed his diet and solved the problems. But the other two wouldn't dream of changing their diets. It is "too radical," "too hard," and besides, their doctor never mentioned the possibility.

Right now, my BIL has been diagnosed with MS. I've read a lot about how dietary changes can help. But he has put up this barrier and won't even talk about it or do any research on the subject. (Really, I didn't expect him to simply take our conclusions as fact; I was simply hoping he would read what had been written, the studies done, etc.) Meanwhile, he continues to eat this stuff that I think is just poison on his system and takes drugs.

All it seems we can do in any of these cases is to forward information and act as good examples.

[frec]

I read some research in the past year about some celiacs being seriously overweight instead of underweight. The lack of nutrition makes them eat more, trying to make up for what their bodies need but aren't getting. Anyway, my friend is very overweight and has terrible digestive problems--always reacting to something--she doesn't know what--and bolting for the bathroom. I've told her about celiac disease but not in the context of causing weight problems. ("Hey, I think the reason you're overweight is because gluten has destroyed your intestinal absorption!"--oh dear.)