Tactfully Telling Someone That They "just Don't Get It"

[MommyStina]

So, I was diagnosed with Celiac three years ago and have been strictly following the diet and lifestyle changes it entails. With the exception of a few slip ups, things have gone very well. We also within the last year have figured out the my daughter has it as well and have included her in the gluten free way to be. When I was diagnosed, I joined this site, a support group, and read everything i could get ahold of, as well as tapping into teh knowledge of a couple of Celiac friends, so I would like to think I have some idea of what is going on in my body ( I also have a premed background, so that helps)

A few months ago, my mother in law was having some GI issues and her doctor (who my husband and I are convinced is a quack) thought she might have had it as well. I tried to be nice and sent a bunch of books and tips down with my sister in law to her. They found out she didn't have it (?), but my sister in law had been reading all the material i had sent down (still don't have any of it back)and then she decided that she "most likely" had it. So she started following the diet. Supposedly...

She stayed with us a couple of weeks ago and didn't eat any differently than my non-celiac husband. Last night she posted on Facebook that she was "glutened )-:" I was confused. I sent her a text message asking is she was ok and that I didn't realize that she had been following the diet and if she needed any help. She explained that she was given a salad at lunch that had croutons on it and had picked them off but it still affected her. Then, she said that when she was taking her allergy meds(she has horrible seasonal allergies) she didn't need to follow the diet but didnt pack them on this trip. She also said that her Dr. told her she has a mild form of Celiac and that it didn't warrant full compliance to the diet as long as she was on her meds. I asked her if she had been tested formally, because (from experience) it can be a pain to follow a diet this strict if you don't absolutely have to....she must have gotten upset because she never responded.

1. Correct me if I am wrong, but don't you have it or not. And if you do, isn't the only option the gluten free diet?

2. I do have another friend who has it, but isn't as sensitive. She doesn't get affected by cross contamination, but I am sick for days if my food is cross contaminated. So, if my SIL has a mild form, shouldn't she be affected like my friend and not be affected by the picked off croutons?

3. Allergy meds control a different type of Immunoglobulin, right? IgE? With Celiac, being an autoimmune condition, we are talking IgG or IgA...shouldn't the meds not have anything to do with the control of the disease?

I am really just concerned. If she reallly does have it, then she is at risk for all sorts of other nasties if she doesn't strictly follow the diet, so what do I do? I don't want to make her even more upset, but I think that she has some misconceptions about the whole thing and I would like to help, but I don't want to sound like a "know it all". If I am wrong about any of the facts please let me know, if that is the case I owe her an apology.

Thanks for the help!

[Skylark]

There are wheat allergies as well as celiac. Perhaps she is allergic? Allergy meds do not help with celiac but they are helpful for people with a true IgE mediated wheat allergy.

You are right that there is really no such thing as "mild celiac". Thing is, there are people who can't tolerate wheat but don't have antibodies or villous damage. Labeling them "celiac" is not strictly correct. Some doctors and scientists would lump all gluten intolerance into some form of celiac autoimmunity but there is not enough research to support that. It's not clear what wheat does to people with non-celiac gluten intolerance, or whether they will go on to develop celiac or other forms of autoimmunity. Some are probably celiac, as the testing has a substantial false negative rate. Others may be sensitive to wheat germ agglutinin or the fructans in wheat.

With true celiac, the severity of symptoms from eating gluten is not necessarily linked to disease severity. There are people with so-called silent celiac who have antibodies and severe villous atrophy and no GI symptoms. They are often identified because relatives have celiac. People with silent celiac could eat a cookie and not notice it. Other people have no antibodies or villous damage, and yet feel awful after eating tiny amounts of gluten.

If your SiL is negative on the celiac tests, or came up with wheat IgE, I would leave well enough alone and support her choice to eat however she needs to feel healthy. If she had even a low positive result on celiac blood tests (sounds like she hasn't been biopsied) she needs to stop eating all gluten.

[GlutenFreeManna]

Skylark pretty much covered the particulars. There is no such thing as "a mild celiac". However you can't make your SIL adhere to the diet if she doesn't want to hear about it. You gave her a bunch of literature and she still didn't understand. You asked her if she wanted your help and she didn't reply. The only thing I would do if I were you is next time she is visiting you, offer to make all gluten-free meals for her as well. Perhaps this will lead into a conversation about celiac vs wheat allergies and eating gluten free. You can talk with her about the things YOU have to do to prevent CC, etc. That way it's just a conversation about it and not a matter of you telling her that she doesn't know what she is talking about.

[conniebky]

Skylark pretty much covered the particulars. There is no such thing as "a mild celiac". However you can't make your SIL adhere to the diet if she doesn't want to hear about it. You gave her a bunch of literature and she still didn't understand. You asked her if she wanted your help and she didn't reply. The only thing I would do if I were you is next time she is visiting you, offer to make all gluten-free meals for her as well. Perhaps this will lead into a conversation about celiac vs wheat allergies and eating gluten free. You can talk with her about the things YOU have to do to prevent CC, etc. That way it's just a conversation about it and not a matter of you telling her that she doesn't know what she is talking about.

I agree with Skylark and Manna. I don't have any tact.

[K8ling]

I met someone who claimed to be celiac as well, and then asked for a sandwich on white bread "Because it doesn't have wheat in it! It's white!". When I pointed out that it was BLEACHED wheat flour and thats a HUGE nono she gave me a blank look and said that her doctor said it was ok.

It gets better: when I was quizzing her about her symptoms/reasons she thought she was celiac, she said "Well, I saw how thin some of my celiac friends were and I thought WOW that must be a great diet! So I cut Gluten out of my diet and then went to my doctor to ask, since i had had trouble dropping the weight!"

O.o

My husband had to keep me from strangling her. She asked where I got my "pretty bracelet" and commented that it was a great accessory (I have class 4 asthma, it's for my asthma and HAPPENS to say I am Celiac on it and I got a pretty one because I have to wear it ALL THE TIME).

After my loving husband said (tactfully) what I wanted to say, he looked at me and said "I think I know why every other country in the WORLD hates us...people like that".

I love my husband so much sometimes. So in my case, I have to have a wrangler so I don't fly off the handle lol

[sandsurfgirl]

I am very direct and matter of fact about it. I will back down on any other subject but not celiac. If someone says something wrong about celiac I correct them right then and there. I suffered needlessly my whole life because of misinformation. I should have been diagnosed 7 years earlier than I was after my OB sent me to a GI suspecting celiac the GI talked me out of testing because there was no way I could have it according to him.

People on here get treated like dirt because of misinformation or ill formed beliefs. So I make it my mission to educate the world.

Everything she said is plain wrong. If she has a true wheat allergy, then why is she avoiding all gluten? All she needs to avoid is wheat.

[K8ling]

The point is she had NOTHING wrong with her, she though wheat and gluten was a fad diet. Also, I avoid wheat like the plague, it makes me nervous to even eat it.

[NorthernElf]

Wow...guess it happens a lot out there ! My SIL was doing this similar thing at Christmas. "Avoiding gluten". She had seen a homoepathic doctor who recommended it and she was taking all kinds of tinctures or whatever you call them...and still eating gluten when she wanted it. Yeah, she is about 50 pounds over weight, I think it might have been a diet thing.

I said nothing...I wanted to because it bothered me but I was spending two weeks with family and didn't want to stir the pot...and maybe I wasn't sure how it would come out once I started !

I spent that two weeks (in Arizona) sick most of the time - constant D, stomach cramps...couldn't find out where it was coming from and ended up barely eating altogether. Then my brother & SIL took us all out to a pizza joint (pizza & spaghetti and a small salad bar I wouldn't touch) where I had a couple of glasses of wine & watched everyone eat pizza...but that's another story. Anyway, as my SIL is chomping on a pretzel talking about eating gluten free...some of the time...well, what's the point !?!?!?!? There I was taking more Pepto than I ever had trying to track gluten sources...finally figured it out to be some food products but also my mom's teflon pans (all her pots are teflon!) and cutting boards and what not - just getting a small steady stream of gluten.

I think the anger comes from the fact that I don't CHOOOSE to live this way, I MUST. It's not some weight loss diet I can adhere to if I want to, cheat when I want to.

[K8ling]

... Anyway, as my SIL is chomping on a pretzel talking about eating gluten free...some of the time...well, what's the point !?!?!?!? There I was taking more Pepto than I ever had trying to track gluten sources...finally figured it out to be some food products but also my mom's teflon pans (all her pots are teflon!) and cutting boards and what not - just getting a small steady stream of gluten.

I think the anger comes from the fact that I don't CHOOOSE to live this way, I MUST. It's not some weight loss diet I can adhere to if I want to, cheat when I want to.

OH WOW do I understand. The cookware at the beach house? all nonstick. I didn't get sick til the 3rd day because i had to build up enough to have a SEVERE reaction...after that initial BAD reaction, I had 3 weeks of it.

I get so agitated with people who do it by choice because you're right, it IS our reality, it IS a fact of life for us. We CANNOT do it. I wish people would take it seriously. You wouldn't go on a diabetic friendly diet if you didn't have to, would you? I feel like people are trivializing our daily struggles when they do that.

[RideAllWays]

Ugh. My boyfriend's mom claims to eat gluten-free..she says she has a huge understanding for it and such but I'm terrified to let her cook for me. When she comes over I try to convince her that I'll do the cooking and she can just sit, relax, etc, but she really likes to get in there. Her son and I keep our apartment completely gluten free and she tends to bring gluteny foods in. She eats a lot of pasta, bread, etc and there is no way she actually eats gluten-free...why would she claim to do so?

Bottom line is, there are always going to be people who think they are being healthy by eating "gluten-free" when the feel like it...but they are even less likely to understand than other people.

[precious831]

You know what bugs me sometimes is being told being gluten-free is so easy. It irritates me when people claim they are gluten-free like it's the hottest thing to be on right now! I have to be gluten-free so I can survive! They don't get it. And I try not to say anything but I do correct people too. I react to even small amounts, it's not funny. My own sister still don't get it, she thinks I'm "allergic" and small amount of gluten won't get me sick. She once brought me eggrolls that she said was gluten-free. I said it isn't, then she said "oh well the waiter at PF Changs said if you have celiac it shouldn't bother you because this eggroll don't have a lot of wheat in it." Anyway I didn't eat them of course. I know for a fact those eggroll wrappers are NOT gluten-free. I've only seen one that is gluten-free and they don't look like that.

Anyway, OP perhaps your SIL is mixing up wheat allergy with celiac and/or gluten intolerance? No amount of allergy meds are gonna help with celiac.

[mommida]

Well, this isn't exactly tactful...

I really haven't done it but someone here did.

Spray the nearest non edible product on a plate of food. (She was being told to pick something off PIZZA and eat it.) The person sprayed Windex on the pizza. She told them to dab it off with a napkin "cause it was just a little POISON on the food" and now they could eat it.

I think she made her point about cross contamination.

Then again when it was my turn to teach an ignorant B^*& trying to push food on my daughter when she was only 6 years old, I didn't go to the extreme and use insect repellent on that B^&*'s plate. I just politely backed up my daughter and said "really she can NOT eat the food now". I pulled her out of the girl scout camp, got her something safe to eat from our cooler, and brought her back to the girl scout event.

[K8ling]

MUHAHAHAHA I love the Windex. I think I might use that.

[MommyStina]

Well, this isn't exactly tactful...

I really haven't done it but someone here did.

Spray the nearest non edible product on a plate of food. (She was being told to pick something off PIZZA and eat it.) The person sprayed Windex on the pizza. She told them to dab it off with a napkin "cause it was just a little POISON on the food" and now they could eat it.

I think she made her point about cross contamination.

Then again when it was my turn to teach an ignorant B^*& trying to push food on my daughter when she was only 6 years old, I didn't go to the extreme and use insect repellent on that B^&*'s plate. I just politely backed up my daughter and said "really she can NOT eat the food now". I pulled her out of the girl scout camp, got her something safe to eat from our cooler, and brought her back to the girl scout event.

LOL!!! Wow! That is a GREAT idea! I think that would get the point across! I have to remember that one....

[MommyStina]

You know what bugs me sometimes is being told being gluten-free is so easy. It irritates me when people claim they are gluten-free like it's the hottest thing to be on right now! I have to be gluten-free so I can survive! They don't get it. And I try not to say anything but I do correct people too. I react to even small amounts, it's not funny. My own sister still don't get it, she thinks I'm "allergic" and small amount of gluten won't get me sick. She once brought me eggrolls that she said was gluten-free. I said it isn't, then she said "oh well the waiter at PF Changs said if you have celiac it shouldn't bother you because this eggroll don't have a lot of wheat in it." Anyway I didn't eat them of course. I know for a fact those eggroll wrappers are NOT gluten-free. I've only seen one that is gluten-free and they don't look like that.

Anyway, OP perhaps your SIL is mixing up wheat allergy with celiac and/or gluten intolerance? No amount of allergy meds are gonna help with celiac.

I am also EXTREMELY sensitive to any amount of gluten! One time, my mom and sister brought a big, green salad that looked perfectly safe to me and I was under the impression that they finally understood what not to do and how to prepare things and was fine with the salad and my own dressing on it until I discovered a random piece of MACARONI in the salad I was eating!!! Come to find out, the same colander that my mom rinsed the salad greens in was used to rinse a pot of macaroni earlier in the day by my brother and he just put is back in the cupboard without washing it! My siser said "don't worry, it's just one piece of macaroni, it won't hurt you, you didn't actually eat it!" Ummmmmmmmmmm.....HELLO!!!! Needless to say, I was not a happy camper an hour later.

[MommyStina]

Wow...guess it happens a lot out there ! My SIL was doing this similar thing at Christmas. "Avoiding gluten". She had seen a homoepathic doctor who recommended it and she was taking all kinds of tinctures or whatever you call them...and still eating gluten when she wanted it. Yeah, she is about 50 pounds over weight, I think it might have been a diet thing.

I said nothing...I wanted to because it bothered me but I was spending two weeks with family and didn't want to stir the pot...and maybe I wasn't sure how it would come out once I started !

I spent that two weeks (in Arizona) sick most of the time - constant D, stomach cramps...couldn't find out where it was coming from and ended up barely eating altogether. Then my brother & SIL took us all out to a pizza joint (pizza & spaghetti and a small salad bar I wouldn't touch) where I had a couple of glasses of wine & watched everyone eat pizza...but that's another story. Anyway, as my SIL is chomping on a pretzel talking about eating gluten free...some of the time...well, what's the point !?!?!?!? There I was taking more Pepto than I ever had trying to track gluten sources...finally figured it out to be some food products but also my mom's teflon pans (all her pots are teflon!) and cutting boards and what not - just getting a small steady stream of gluten.

I think the anger comes from the fact that I don't CHOOOSE to live this way, I MUST. It's not some weight loss diet I can adhere to if I want to, cheat when I want to.

EXACTLY! It isn't a choice it is a necessity!

After reading a few posts here, I had a long, detailed conversation with my SIL about what she was told and how wrong it was and she explained her Dr.s reasoning for the diet and allergy meds (I am convinced he doesn't really have a clue what Celiac is and how it is dealt with) and she set an appt. to get a second opinion from another doctor!!! I though we made some progress!!! Then....

We ended up going out to eat this weekend to celebrate my husband's birthday and mine (we are two days apart with out anniversary in between (- and my inlaws took us out. I ordered very specifically for my daughter and I and watched how my SIL and MIL ordered...for both of them claiming to be on the diet, neither one of them ordered anything specifically altered, I don't even think they listened to how I ordered. My MIL was eating rolls and Caesar salad...my SIL didn't eat anything that would have had gluten in it...well, except that the seasoning on the steak she ate all of definately had gluten in it, that's why I ordered ours WITHOUT.

Argh!!!! Just when I thought I had made progress, boy was I wrong. /-: Talk about frustrating!

Do you ever feel like you are screaming commmon sense, life saving information at someone and they are either completely deaf or living in a vacuum, or who knows what?!

[GlutenFreeManna]

EXACTLY! It isn't a choice it is a necessity!

After reading a few posts here, I had a long, detailed conversation with my SIL about what she was told and how wrong it was and she explained her Dr.s reasoning for the diet and allergy meds (I am convinced he doesn't really have a clue what Celiac is and how it is dealt with) and she set an appt. to get a second opinion from another doctor!!! I though we made some progress!!! Then....

We ended up going out to eat this weekend to celebrate my husband's birthday and mine (we are two days apart with out anniversary in between (- and my inlaws took us out. I ordered very specifically for my daughter and I and watched how my SIL and MIL ordered...for both of them claiming to be on the diet, neither one of them ordered anything specifically altered, I don't even think they listened to how I ordered. My MIL was eating rolls and Caesar salad...my SIL didn't eat anything that would have had gluten in it...well, except that the seasoning on the steak she ate all of definately had gluten in it, that's why I ordered ours WITHOUT.

Argh!!!! Just when I thought I had made progress, boy was I wrong. /-: Talk about frustrating!

Do you ever feel like you are screaming commmon sense, life saving information at someone and they are either completely deaf or living in a vacuum, or who knows what?!

Well at least she is seeing another doctor. Hopefully this one will straighten her out. Is there any chance she is confusing gluten free with low carb? I had someone ask me once if they were the same thing and I had to explain that there are many gluten free foods that are high in carbs, and that low carb diets are for weight loss whereas gluten free usually has to do with a serious health issue.