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elawphoto

How Do I Explain?

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I was diagnosed about 3months ago. My family has been just great about it, but my boyfriend seems to be in denial. He doesn

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It seems he is not as supportive as you think he is. :( You don't have to prove it to anyone. You just have to do what you need to to keep yourself healthy. If he or your friends don't believe you...are these the kinds of folks you want around you? I'm not officially diagnosed, but did the diet test to figure out what my issues are. I dare anyone to argue this with me. I know how I feel, and I know I feel 100% better off gluten and peanuts. One foray into gluten, and I'm toast. Ugh. You are diagnosed. One last ditch effort could be taking him in to talk to your doctor with you. If he's still skeptical after that, I'd find someone who wants me to be healthy, over wanting to have things always the same and easy.

Good luck.

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In my opinion, boyfriend or not, he doesn't have to understand it at all - he only has to respect your decision to eat gluten free. It sounds like he's not respecting your decision if he's constantly questioning you. I'd tell him "My decision, not yours. Grow up and respect it." (Harsh, yes. But respect is a BIG important thing in relationships. :) )

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Hey there is a book written by Dr. Peter Green that might help him understand the disease if you can get him to read it. It covers most of the physical issues and risks and explains how the disease damages our bodies, maybe reading it from a doctor would help him to accept it.

If you are in a committed relationship that you think is going to be permanent then maybe seeing a counselor to work though this might be a good idea if it continues and doesn't seem to be getting better. You need support, this is a lifelong change for your health and you need to have a partner that is supportive of you (beyond the celiac for anything in a long term relationship really). It could be that he just needs help to accept and understand it or it could be he just isn't the sort you should be with long term. I'm wondering if he is letting other people influence him rather than standing up and supporting you, something you need to learn about him.

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How do you explain to others about the disease? Especially when they question it.

Honestly?

I tried a LOT of methods at first. Got frustrated a lot. Now? I go simple but shocking.

"Well, its a choice. Eat gluten - have massive diarrhea to the point I don't feel safe leaving the bathroom, generally want to die, and accept that, like my grandmother I will soon get to experience the joy of a colostomy bag and an early death due to stomach cancer. Or, skip the Wonderbread and have a long, happy, healthy life where I have the ability to do all the things I want to. So, you say you care about me - which is more important? The bag of cookies or living?"

Expect shocked stunned awkward silence.

But the point usually gets across. Or, I at least get a pretty clear understanding of who is of value in my life and who should be jettisoned at the first opportunity.

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It's hard to explain, that's for sure, and there's no pill for it,I think doctors have a hard time with it too, like it can be controlled by diet??? My daughter was diagnosed with it and her husband has been pretty good with it except he thinks the gluten free food is like "taboo" to him, like he'll get sick if HE eats it? Men are weird anyway. I just bombard people with articles I researched. How can you argue with medical documents?? Just print some and hand them out to people, or put them where your boyfriend can read them or email them to him. I just served gluten free mac and cheese to my husband and besides being kind of "al dente" he said it was fine and he was afraid to try it, WHY I don't know?

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Honestly?

I tried a LOT of methods at first. Got frustrated a lot. Now? I go simple but shocking.

"Well, its a choice. Eat gluten - have massive diarrhea to the point I don't feel safe leaving the bathroom, generally want to die, and accept that, like my grandmother I will soon get to experience the joy of a colostomy bag and an early death due to stomach cancer. Or, skip the Wonderbread and have a long, happy, healthy life where I have the ability to do all the things I want to. So, you say you care about me - which is more important? The bag of cookies or living?"

Expect shocked stunned awkward silence.

But the point usually gets across. Or, I at least get a pretty clear understanding of who is of value in my life and who should be jettisoned at the first opportunity.

:lol: :lol: Now I like this response! Not that I'd say something like that the first or second time someone asked me why in the world I now have to eat like I do, but....for crying out loud, if I were in your situation, where no one seems to want to accept it, I like the right-between-the-eyes response.

But then sometimes my bluntness shocks people anyway. :rolleyes:

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Just some ideas to pass along, that might help.

To help explain why it's a big deal:

I've compared it to diabetes before, since that's so well known. It's helped, sometimes, if I kept it simple. I basically said this:

--celiac disease is not an allergy, or a sensitivity. Celiac disease is an autoimmune disease just like diabetes.

--both diseases involve our own bodies attacking other parts of our body until that body part no longer works. Diabetes attacks cells that create insulin. Celiac disease attacks cilia that digest food.

--For both diabetes and celiac disease, the end result is an early death.

--We have found a way to create insulin that can help people with diabetes. We have NOT found a way to create new cilia to help people with untreated Celiac Disease.

-- And the only thing that makes it possible for us to survive? Celiac Disease is the ONLY auto-immune disease that we figured out what makes the body attack us: digesting gluten. It's like if we found out that, say, eating broccoli causes diabetes. For everyone who found out and stopped broccoli before their cells were destroyed, they would never be in danger of developing diabetes if they stopped eating broccoli.

If we didn't know about our 'trigger', we would eat gluten, and eventually die from starvation and nutrient deprivation because our body would lose the ability to digest food. Like a diabetic before the discovery of insulin.

I think this can put the disease into a context that people can understand, and help them realize why it's so serious.

To help with problems getting across on sensitivity and cross-contamination:

--think of gluten like raw meat that never gets cooked. If you used a knife on raw meat, would you then go use it on your fruit? If you used a cutting board to cut raw meat, would you let other food touch it without washing? Of course not! If you splattered droplets of blood opening a package of raw meat over the kitchen...would you assume it's fine because you can't 'see' all the droplets, or do you clean it up because you know the bacteria is still around?

I think this one helps because so many people know how dangerous raw meat can be to our health, so making this connection can help get the point across of how careful we have to be. If just touching raw meat and touching our tongue can get us sick, why wouldn't it be possible with another substance, like gluten, for someone who gets sick that way, ya know?

To deal with the misconception that celiac disease is being overdiagnosed, AND a good reference to realize how serious it is:

This study: http://www.reuters.com/article/idUSTRE5694O320090710

They had a supply of frozen blood from 1948-1954 that was tested within the past couple years for positive evidence of celiac disease. The sample size was in the thousands. It was tested with the same tests that they use today, obviously.

The results:

1) positive test results were four times greater in the modern blood than in the blood from people 50 years ago. So more celiac disease folk today is not from being overdiagnosed, it actually is increasing in the population, and we don't know why.

2) they tracked down the people who had given blood in the 50's. The ones who had tested positive for celiac disease were nearly 4 times as likely to have died in the 45 years that followed the study. So NOT treating this disease, or ignoring it? Will shorten our lives.

Don't know if these will help, but I sympathize - we just had to go visit relatives and got a lot of the 'it's not really that much of an issue, you're not really that sensitive' during the trip. Sigh.

I was diagnosed about 3months ago. My family has been just great about it, but my boyfriend seems to be in denial. He doesn

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i realize this is probably going to be an unpopular opinion, but why do so many celiacs spend so much time & energy trying to explain, explain, explain celiac disease to skeptics? after 2 years of being gluten-free, my response is easy: "i don't eat gluten, i can't digest it, it makes my stomach hurt." that's where it ends. no lectures, no handouts, no arguing. if people try to push food on me i just walk away. i don't want to carry around articles and have arguments with everyone, so i don't. yes, people can be insensitive and hurtful, but if i let every person upset me i'd be upset alot the time, and i refuse to let other people stress me out to the point where my stomach hurts and i go home and cry. i also don't want to spend my social time talking about diarrhea, gas, bloating, villi, etc. especailly at the dinner table - gross.

i am also in AA (8 years now), and i don't spend tons of time talking about what alcohol does to me, either. i could, i suppose, relate all the fun things of that disease, too: waking up in stranger's beds, waking up on a train without knowing where it was going, getting fired from my job because i showed up hungover and puked in the conference room, etc. but why? people will either be supportive or they won't. if they are and they genuinely want to help me i am happy to talk about it (celiac or alcoholism) but otherwise i either change the subject or i leave. i am in control of myself, my health and my emotions, not the people around me.

elawphoto, your boyfriend sounds scared that you will get sicker, or maybe that you will pull away from him, and that is understandable - this is new and overwhleming for him, too, and it's nice that he is learning to cook gluten-free. but if he is arguing with you and making you feel bad about your choices he is NOT being supportive. my advice? think long and hard about whether you want to stay with someone who will not be there for you when you need him. do what you have to do to take care of yourself. good luck.

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i realize this is probably going to be an unpopular opinion, but why do so many celiacs spend so much time & energy trying to explain, explain, explain celiac disease to skeptics?

Likely not for every case, but I have found it's often less of a case of trying to explain yourself to skeptics... as dealing with twits who won't drop it. Beyond telling the server that I have celiac and here are my needs - I really don't WANT to go into it at the table. But there often seems to be one soul at the table who MUST make it a thing. Either to prove how smart they are, mock someone openly at the table, or simply because they don't have the intelligence to realize they are being rude. (Yeah, I know I sound rather bitter about that. Blame it on dealing with Stepford wives at my husband's company functions.) Now, the easiest way around THAT is to simply not go out to eat with folks like this. Sadly... not always possible. And as breaking into tears, popping someone in the nose, or stating flatly "You are an idiot of the first order who needs to kindly shut up" are usually viewed as less than socially acceptable.... explaining and hoping you hit a few connecting neurons often seems like the best/only solution. :P

On the other hand... more often than not I simply either try to avoid the situation in the first place... or as I said my first reply go for shock tactics to at least shut the conversation down. I have learned I don't have to explain anything if I look at someone frostily and say something along the lines of "You really are a rude and moronic fellow. Change the subject at once." while attempting to channel my great-aunt Wilma's steely hauteur.

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magpie -

i like the steely hauteur image...need to work on that myself!

i guess my tactic is proactive avoidance, not being defensive. like at a potluck i will take some of the hummus/gluten-free dip/whatever and put it on my plate - that way i don't have to worry about people dipping gluten crackers into the wrong dip. at the holidays i get in line first & put large helpings on my plate to avoid being CC's by utensils. if i think there will be no gluten-free food at some event i eat before i go, not when i get home, as so many people seem to do. what's the point of that? being hungry, watching people eat food when i can't eat is a really good way to torture myself, blow up at someone and give the impression that i am nuts. for the people who will not let it drop (what IS wrong with them?) i will tell them very bluntly that they are being rude, ruining everyone's meal and i will not engage them any further. that is a trick i learned from a vegan friend. if you want to see some ganging up at the table try eating with a vegan and a bunch of meat eaters - i have never seen such outright hostility! to her credit she lets it roll off her back, but she taught me that people can only argue/mock you if you engage them.

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Magpie, you just made my day! I'm going to start rehearsing those lines tonight so when I'm prompted about cheating on a piece of bread, I'll have one heck of a come back. Thanks again! I'm in stitches over here!!!

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I'm thinking that I'm just going to say I have an allergy to grains. I know that is not really the case, but they do understand what an allergy is. For those in our immediate family, maybe they need/want to understand more about what's going on, but for everyone else, not sure that it's necessary to give all the details. My friends and family are stilling having trouble believing that I am having issue, since this started for me 2 months ago at the age of 41.

Since I'm new to all this, there has been little impact to my family. I have taken the burden of worrying about what I'm going to eat on myself. I don't limit where we eat, I just try and find something once a restaurant has been selected.

Try not to worry so much about what they understand or believe. You can't eat gluten because it will hurt your insides. How much more do they need to know?

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I get frustrated with others (mainly aquaintences, but also some friends) who don't seem to get it, either. I just get irritated when they just seem to think "so you have some food allergies. Big deal." I try not to waste my time explaining to these people anyway, as it would just burn me up. However, I am trying to educate as many people as possible about this and most people are somewhat sympathetic. However, my family (outside my immediate family) knows I have it but no one has gone out of their way to contact me or ask me how I feel. It hurts sometimes, but I try to blame it on ignorance, instead of simply not caring.

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You know, I've never had anyone actually disagree with me about Celiac. If someone asks, I say I have Celiac first, and either they understand or I get the blank stare. If I get the blank stare, I say, "You know in the health food section at the grocery store, all the stuff labeled 'gluten free' "? And the light dawns and they go, oh yeah! And I just say, that's me! Never had a problem. My boyfriend's family still doesn't get that I'm not eating any of their food, yes I know it's just hamburger, I brought food I'm fine. But they don't give me a hard time about it, they're Italian, they can't help but try to feed me.

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I've really never had any trouble with people being rude about it either (which, reading some of these horror stories, I am thankful!). There was one situation, where at a restaurant I stated I needed it on a Gluten-free bun, and the waitress asked if it was for a gluten allergy, which I replied Celiac, and the fifteen year old girl at the other end of the table bust out laughing...however, I gave her the benefit of the doubt that she was 15 and didn't quite understand (and I enjoyed every bite of that gluten-free meal!!). On the other hand, her older brother, who is my age, kept talking about my "made-up celiac" because he's known me for about 6 years now and I just got diagnosed in April. Thankfully, his mom seems to understand, and asks me about what I can/cannot eat.

Wow. Reading some of these post, I truly do feel blessed that the people I talk to are more sympathetic and understanding than skeptical and insensitive. Two of my best friends don't quite understand everything about gluten--but I don't expect them to. They don't have to live with it, I do. And they're more than helpful throughout the whole thing. :)

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When people comment on how often it is diagnosed, I say "doctors have developed better blood tests in the past 10-15 years. It isn't occurring more frequently, just getting better diagnosed and at an earlier stage of the disease." I also address the fad diet concerns by saying, "Since a STRICT gluten free diet has such dramatic results for someone with Celiac, it has gotten a reputaiton as a miracle diet." Then I share a little opinion about either why it is good that healthy that people are giving it a try because it might help more people get diagnosed and why going gluten free isn't for everyone. That is often decided by the reaction I'm getting from my conversational partner. If they are female and have that glint of weight loss diet sparkling in their eyes, I make sure I tell them I gained 20 lbs when I started the diet, but if they have concerns about IBS, fibro, or depression, they might want to get tested or give the diet a try. I've never gotten someone who does not either let it drop or develop genuine curosity, but if I had a jerk who continued to give me a hard time, I would probably belittle them by insulting what must be their heavy reliance on morning shows for their medical information and then move on to a new topic.

Usually in any difference of opinion, if you can find something about which you agree and work out from there, people can be educated, minds can be changed, and compassion can be found.

Also know that you don't have the responsibility of educating everyone. Sometimes it is easier to educate those you love and spend lots of time with and just say I have food allergies and thanks but no thanks to everyone else.

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I do think "so I have food intolerances. big deal." I don't take them lightly, but they're not a "big deal" either.

And I can't fathom extended family members or friends calling me just to see how I was feeling about needing to be gluten free. I didn't expect that when our baby was born, and the dietary change is a far smaller thing in my life.

I don't say this to say "whoa, those are crazy expectations" (though I do think they are unrealistic) but to point out that everyone will think differently on this one, and just because someone doesn't meet your expectations doesn't mean that they're doing something wrong.

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