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Other People's Negative Reactions

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I would like to ask if anyone else has suffered from sarcasm from others relating to their following a special diet.

Here is my situation- I was depressed since I was a young child, and plagued by throat problems. I had my tonsils out, and then got ulcers constantly where my tonsils had been. I had a biopsy on a particularly long-lasting ulcer, which was fine, but the doctors told me to go away as they didn't know what to do about my throat. I couldn't get through a day without a nap, I'd nap on the bus, in class, on a bench, even on the floor if necessary. I received psychiatric treatment in hospital as a teenager for my depression and was on SSRIs for 15 years, I was told that I would need to take them for life. No doctor suspected gluten and I was told to live with my condition.

So in my desperation I tried various alternative treatments, eventually arriving at nutrition. The nutritionist immediately suspected gluten and told me to stay off gluten and see what happened. I got better within weeks, no more throat probs, no tiredness in the day time, not depressed, its been 2.5 years now with zero meds, giving up gluten has literally been a lifesaver.

Anytime I accidently ingest gluten I get a throat ulcer within a few hours and the next day I wake up mentally unstable- I sometimes have tantrums, cry easily, am rude and aggressive, feel empty and hollow, and I'm exhausted.

I have contemplated doing a gluten challenge and doing the proper celiac tests but I fear for my mental and physical health, I worry about doing myself serious damage which couldnt be undone (my Dad has ME), plus I have a job and a life and I don't have several spare months to be sick.

SO in the face of all this there are certain people in my life (old friends and family members) who accuse me of being neurotic and faddy for avoiding gluten. They say I've been swayed by nutritionists and that I should either get 'proper diagnosis' or eat like everyone else. It has caused some unfortunate ruptures, both in the family and in friendships, as I feel pretty hurt that these people don't appreciate how much better I am and don't respect me wanting to look after myself. I have been accused of it being psycho-somatic, although I know it isn't- on so many occasions I've thought, 'I'm fine, I'll just have this little cookie', and BAM, a throat ulcer the same day.

Over time I'm realising just how strict I have to be to be well, but its SO hard socially. I have avoided the people who have been negative, but I can't avoid them all the time, and I still feel pretty hurt.

Thankfully, my closest family and my boyfriend completely support me, because they have observed my miraculous transformation, my parents no longer have to worry that their daughter is on the verge of suicide, they're delighted.

Has anyone else (I guess especially those without a diagnosis) had sarcastic reactions from others, and how do you deal with it?

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I am sorry you are having such difficult time with some family and friends. I wish I had some suggestions, but I don't. My only thought is to not bring up the g word and just beg off with other excuses, like I'm not hungry, I'm on a diet (not dishonest), etc to avoid whatever they think you should eat. I totally understand feeling 100% different and I didn't even have "symptoms" like many people have had to endure. You just have to do what you know is right for you and not put energy into those who are unwilling to support your choice whether they agree with it or not. Hang in there...and welcome!

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First off kudos to you for sticking to what you know makes you feel better & healthy. Peer pressure at any age is hard to deal with. I would say those who think you are maybe a tad unstable or whatever they may call it are not your true friend or relative who care about your well being.

You are an adult & you know better than anyone how you feel...I agree with you I would not do a gluten challengee ... I would not risk being ill for who knows how long to make anyone else feel good at your expense...I don't need to prove anything to anyone except myself & who I care to....

People are very stupid when it comes to autoimmune disorders & even allergies to food. If they don't have them then they are not real.

And please don't waste your energy on these people, enjoy your health & happiness with those you know love you & see the change in you.

You owe nothing to no one except yourself & your maker....

This same issue happens more often than not for most of us...

blessings

mamaw

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Ahhh...yes, I've gotten the "fad diet" comment too from a relative who funny enough keeps her dog gluten free because of the issues it causes the dog. Her husband suffers from "IBS" and his brother from idiopathic peripheral neuropathy. But when I suggested that perhaps they look at the possibility of Celiac disease, it was brushed off and discounted. Well after 3 months of D, I've been gluten free for a week and miraculously the D is now gone. I don't care what the results of the biopsy and Celiac panel are, I already know the answer. Hang in there and don't give them a second thought. Your health is more important!

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Isn't it wonderful to get off the psych med? I was doing gluten-free before it was a fad so I didn't have to deal with quite as much flak as it sounds like you're taking. I couldn't challenge either. I was in graduate school and like you, gluten gives me psych symptoms as well as GI trouble. I ate one sandwich, was miserable for that day and the next, and decided I'd stick to a celiac diet. I have so many symptoms of celiac there isn't any doubt in my mind.

If I run across sarcasm I get equally rude, describing the precise GI effects of eating small amounts of gluten in graphic detail. I can get pretty severe D for hours from small amounts, like food from a shared fryer, and the description is graphic enough to make people want me to shut the heck up. I say "well, you weren't taking me seriously" and drop the subject. They don't trouble me again.

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I'm sorry you are dealing with people who are unwilling to listen, consider your feeling, or support your diet. It's funny, I grew up being accused of being a hypochondriac, too, though my health issues were not as serious, and now I always second guess myself when I have a concern. I talked to a dr re: my son yesterday and she said something you might appreciate:

Why would you go forward with more teasing when you already know what works?

I have struggled with depression and I think you are right to be concerned about a challenge. Even if you know it is the gluten talking, it still feels the same.

Why are these people in your life? Do you see them a lot? I think I would seriously consider which of the unsupportive people I wanted to keep a relationship with, and write them a letter explaining the pain you have been through, and the relief you have achieved, and what you expect from people who stay in your life. You don't have to ask them to believe you - it can be something as simple as don't say a word about it if you can't be respectful or supportive.

This situation reminds me of coming out as gay. At one point I had to lay down the law with my own dad. I told him if he wanted to see his grandiose he could not keep making gay slurs and negative comments in front of them. I had to tell people what was acceptable behavior around including my partner at family events. People didn't like it at first, but over time they've come to accept us and some even love her. I think the same can happen with the food.

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Thank you so much for taking the time to reply everyone, you have really cheered me up and motivated me. domesticactivist, I can appreciate the parallel you are drawing with coming out- this is who I am, deal with it. I think I've been semi in denial about just how exageratedly gluten sensitive I am but it keeps banging me over the head, first I had to really accept and understand that about myself, and now other people are going to have to.

This is truely an inspirational forum, its wonderful to meet so many people who have been in very similar situations and who share so much information and life experiences, wish I'd found it years ago.

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My thoughts - anyone who would compromise a friendship over the foods that you choose to eat is dumb. I don't say that flippantly, I'm serious. My husband doesn't like tomatoes - something "normal" people eat, but he can't stand. Is anyone up in arms that he avoids anything with tomatoes? (And when you are talking social events, there's a darn good chance that there's something with tomatoes a good portion of the time.) No, no one cares. It's his choice.

Anyone who is going to get in your face about your own choices is not worthy of your time. They're too preoccupied with making everyone in their world fit their own little picture to actually CARE about anyone.

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I have had the sideways looks and could tell they were waiting for me to look away so they could roll their eyes in disapproval. But when it comes down to it they are either jealous or ignorant. Most people want to live and eat healthier but lack the motivation to do it so they try to undermine those that would succeed. All the others have no idea what it is like to live life in constant pain or sickness and lack the empathy to care. I find that not making a big deal out of it helps. All my close friends and family know but I feel like others just dont need to know because people who arent close just dont seem to get it. When the subject of food comes up at work for instance I politely decline their offers and insist that I am not hungry or I have my own healthy food that I prefer

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I just want to let you know that you are not alone. My mother was institutionalized for a short while when I was 17 and has never been able to live completely unsupervised. Don't get me started on her doctor. My mom's mom was institutionalized when mom was 7 and remained there her whole life. I don't have a formal DX but had a doctor point me in the right direction and it's clear I need to be gluten-free.

As for other's reactions. It hurts. I know. I am not as thick skinned as I try to be or would like to be. I've had some difficult, necessary conversations lately over an allergy. Just this week. Cried some tears, some for me some for my son. One was a science teacher and another a nurse so both should have had the skills to understand but both completely shut down, didn't care, no compassion, questioned the DX and made me feel like I was nuts, making it up, sadly misinformed, a hypochondriac etc. The nurse even tried to DX me over the phone. I don't need a DX. I already have one and it's accurate, doesn't fit the small box the she's been taught. I wish I had some good advice for handling these things. I need to figure out how to do it myself. I've thought about just saying straight up, "you've crossed the line now" or "Why is it that I feel like I need to have a lawyer with me when we have these conversations?" I really do feel that way! I'd love to see how they respond.

On the subject of being called a hypochondriac, my family has called me that since I was a kid, but funny thing, I am the healthiest of them all now! Even though they now know their health problems, they don't manage them well. Would rather feel sorry for themselves. Funny thing about that too. I feel like it's easier for people to feel sorry for others who don't manage well but not for those who do manage well, we just get the criticism. I think doctors fall into this trap too. I've come across this attitude. I have the same disease, I deserve respect and the same attention as somone who's "worse off"(who may not even be trying at all). That nurse recently kept harping on folks she knows who have more severe reactions than we do, as if we had no respect for them and what we were requesting was uncalled for, and as if since we don't have those reactions we can't possibly have this allergy, but we do and I am trying to prevent such reactions. We have the opportunity to do that. If we wait 'till we find ourselves in that boat it will really too late and life threatening and our daily life will be seriously impacted. I think people like to unconsciuosly pull others down with them. I think too that as a society, we've been taught that things, food etc. are what quality of life is all about. Often when I face healthcare providers with these difficult choices of sacrificing things or foods for the benefit of health, they advocate choosing the things or food and sacrificing health, as if one has no quality of "life" without them. My mother's doctor falls into that category.

Sorry for being longwinded. It's tough swimming against the stream. It's good to know we have places like this to come and feel a little more at home. Hope you feel welcome and supported.

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Why are these people in your life? Do you see them a lot?

Good thing to question in your case, I feel. We (husband/daughter and myself) recently opted a no-show at the "family" get together on Christmas! Can you believe it? I had brought up the topic of food to my sisterinlaw and I volunteered to bring in some gluten-free goodies so that our daughter could at least have something other than carrots and she gave the most sarcastic "I don't care what you bring". No mention of doing even the slightest adjustment to the food for her or anyone else (and let me tell you, it's not the greatest)

The family knows about our daughter. Their kids, too, may be suffering and they don't know it (my husband's side).

It's how some people are. Family is what it is, right? I am not sure what motivates or drives this negativity, but don't let it get to you. Be strong!!! They may just find themselves with it someday.

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I am sorry you've had these experiences and I'm glad your closest family are very supportive of you.

I have been lucky, I guess. People have been supportive. I thought my mother was thinking it was a fad diet from some of the things she said but when I stayed with her recently (for the first time since I went gluten free) she was fantastic at making sure we avoided CC.

I know what you mean about it being hard socially; the stuff is in everything and cc is a big worry so eating out can be tricky. But as far as people pushing food on you, I think that there is no justification for that and they really need to grow up and except that the world doesn't revolve around them and won't be a better or worse place as a result of whether you eat the cookie or not! It sounds harsh but it's awful that you've been so stressed by people who get to pat themselves on the back for being generous by forcing you to eat things you can't. We don't make cookies for the nutritional value, but because they are a treat. They aren't a treat for you if they have gluten in them, so the thought behind them had gone from 'providing a treat' to 'ensuring a close friend gets super sick'. If someone pushed gluten food on me, I'd ask them "why do you want to hurt me? What did I do to you that would make you want to hurt me so bad?". See what they say to that! If they want the friendship to be about hurting each other, maybe you can ask if you could stick pins in them for a while, surely that won't hurt much either ;-)

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I get sarcastic remarks sometimes and I guess it depends on my day how I feel and react. Mostly I ignore them and relish the fact that I feel good, I look good and that I'm happy. How I achieve that is my own personal journey and not up for debate.

I also opt not to give food so much power. It's just fuel. Fuel to get us through the day. Don't get me wrong, I am a foodie, I love to cook, it's my yoga but removing the power food had over me is the best thing I ever did. Once I removed all my food intolerances this became easier as I no longer had ridiculous cravings or a bottomless pit of a stomach.

When I have a pity party moment I remind myself that it's just food. In our society food has become a past time and a social event. In many countries people don't have that luxury. They might only get one meal a day. So these are the things I think about when faced with negativity either from someone or even from myself.

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