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Advice needed about Bullying


pugqueen5432

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pugqueen5432 Newbie

I got diagnosed with celiac disease at the age of 4. I'm currently in high school and get bullied constantly and always feel like a let down to others because the food can be so expensive, most of the people I know had no clue what celiac was and are still trying to get used to it which means they don't know what to buy and or what contains gluten this makes it a hassle for them when I come for dinner I feel like I'm making things harder than they are. I don't know how to stop feeling like this, like I'm putting extra stress on people. This disease has become an embarrassment to me and I hate going to friends houses because of feeling this way. If anyone has advice I would appreciate it so much.


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Scott Adams Grand Master

Welcome to the forum, and I'm really sorry to hear that other students are your school are being bullies over your gluten-free diet. It surprises me to learn that they would not know more about others needing a gluten-free diet for health reasons, but the problem isn't you, it's them. Clearly you can't and should not want to be friends with such people, and it's probably best for your health a psyche to avoid them.

My hope is that you do have friends that are open minded enough to not only understand your need to not eat gluten, but that they would also be supportive of it. If you don't yet have friends like this, your life's goal now should be to find them, because they are out there. I'm sure that there are other people at your school who need to be gluten-free because 1% of people have celiac disease, and ~12% have gluten sensitivity, and both of these groups must avoid gluten.

GodsGal Community Regular
  On 9/5/2021 at 6:19 PM, pugqueen5432 said:

I got diagnosed with celiac disease at the age of 4. I'm currently in high school and get bullied constantly and always feel like a let down to others because the food can be so expensive, most of the people I know had no clue what celiac was and are still trying to get used to it which means they don't know what to buy and or what contains gluten this makes it a hassle for them when I come for dinner I feel like I'm making things harder than they are. I don't know how to stop feeling like this, like I'm putting extra stress on people. This disease has become an embarrassment to me and I hate going to friends houses because of feeling this way. If anyone has advice I would appreciate it so much.

Expand Quote  

Hi! 

First of all, I just want to say that I am sorry that you are being bullied. That's not ok. Unfortunately, there are a lot of people who don't understand what it is like to have an autoimmune disease. There are kind people out there. But sometimes people will use any kind of differences to make people feel bad about themselves. It's not anything that is "wrong with you." The problem is inside them.

Are your parents aware that this is going on and how you are feeling? Is there a teacher or counselor you can talk to? This is not something that you should have to carry alone. It is ok to ask for help.

I have a hard time in social settings too. You are not alone. It feels awkward sometimes. This disease is hard. And, it's not well known. 

My advice is plan ahead. If you are planning to hang out with a friend, maybe ask your parents to talk to their parents to explain your dietary needs, and why eating gluten free is so important.

You can also say something like, "I know that with my celiac disease it is really hard to find and prepare food that I can eat. Would it be ok with you if I brought my own food?"

Another thought...can you invite them over to your house instead of hanging out at theirs?

None of this is your fault. You have celiac disease. But, you ARE NOT celiac disease. It does not define who you are. True friends will be kind and supportive. 

I want you to know that we care about you. So, please keep us posted! 

MollyMarblesPie Newbie

I know what you mean, I was diagnosed after High School, so going into college I had to explain I couldn't eat what others ate, they would bring cake, doughnuts into class at times and I would be the only one not able to eat it. Celiac Disease isn't really well know, the average person has no idea what it is, or they may brush it off as not being a big deal.  I like what GodsGal said, about bringing your own food to your friends house, that's what's best in my opinion. that way you know what's in it and how it was prepared. If you're just snacking at your friends house Lays Potato Chips are gluten free, Cheetos,  Kettle's Potato Chips, I'm just listing some cheap gluten free snacks, these are what I eat personally from time to time. If you like Popcorn, popcornopolis, I'm pretty sure majority of their popcorn is gluten free, I've had their cupcake popcorn which is gluten free. I could list more but I don't want this post to be too long! Just giving a few ideas.  

trents Grand Master

You might consider writing up a primer on celiac disease and what gluten is/where is it found to give to family and friends to help them understand it better. There are published resources on this forum to help. One is titled, "Getting started" or something like that. Scott, can you link that one?

Scott Adams Grand Master

I think you mean this one:

 

trents Grand Master

Yes, that one. Thanks. I bookmarked it for future reference.


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    • somethinglikeolivia
      Responding to both of your replies: thank you so much!! That makes a lot of sense and helps me feel better about it - I really appreciate the clarification and recommendations. You guys have been very helpful and this site is a gift. Thanks again! 
    • trents
      I think giving attention to the main sources of exposure such as direct consumption of gluten and gross cross contamination with reasonable attention to handwashing and thorough counter top cleaning and dishwashing should cover cross contamination issues. The biggest precautions would be eating in restaurants and at other's homes. Don't get paranoia over it and don't make trouble where there is none. As far a what you communicate with your physicians, just tell them what you know. Strongly positive antibody tests, negative biopsy, positive symptoms when consuming gluten with clearing of symptoms when gluten free.  
    • trents
      Occasionally we do see anomalies where celiac antibody tests are positive but biopsies are negative, and even visa versa. Sometimes, damage to the small bowel lining is patchy and unless numerous samples are taken from various areas, the damage can be missed. So, there's that issue as well. I think in your situation, the tell-tale indicator is the difference in symptoms between when you were off gluten and when you were consuming it.   
    • somethinglikeolivia
      Okay, that makes sense - so based off of the 90% odds that it is positive, it’s worth switching to fully gluten-free? How strict do I need to be with cross-contamination, handling, etc. Is it something that can go by feel, for instance if I feel okay making my family sandwiches and handling the bread as opposed to eating it, or is it something that is causing silent damage even if I feel fine? Also, do I make it clear to my rheumatologist and other medical providers that I am celiac? Or will they veto that due to negative endoscopy? Thanks again for the help!
    • Scott Adams
      If you look at the article that I shared you will notice that "The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease," so your results indicate that you very likely have celiac disease, especially if you also have symptoms while eating gluten that go away when you stop eating it (although many celiacs don't have obvious symptoms).
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