• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

How To Respond?
0

Rate this topic

7 posts in this topic

Recommended Posts

I am newly diagnosed and am looking for suggestions on replies to other people's comments, such as "what happens if you eat wheat?" Or "how can you do It? I'd die if I couldn't eat wheat!?" Or " how's your tummy?" I want to scream. My tummy? It's not a stomach ache! Are people really that uninformed? Even before I was diagnosed I knew what Celiac was.. Yes, my sister and brother have it, but I think I would still know something about it? And, no, it isn't easy, but I don't have a choice. I don't want to be insensitive or rude in my replies, but I am having a hard time.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I use such questions as opportunities to educate people. I've found that when I discuss it openly and in a knowledgeable fashion, people seem drawn in and begin to wonder if they or people they know have it. It helps to point out how common celiac disease is and how few people have been diagnosed. Tell them it's a genetic, autoimmune disease that affects the absorption of nutrients and hormones, and that's why the symptoms can vary so greatly. You can list some of the common ones (anemia, bone and joint pain, migraines, infertility, tooth enamel defects, etc.). If people want to hear more, you can tell them about cross-contamination and how even one molecule can spell trouble for a person with celiac. Believe me--people will have more questions as they suddenly realize that they, themselves, may have this very disease...or gluten sensitivity. Also, with regard to the diet, you can tell them that you simply eat like a person from an earlier century, which is a more healthful way to eat--it helps you absorb more nutrients and will help you live a longer, more healthful life. You don't have to shame them for their eating processed foods--merely point out that society has gotten away from eating "real" foods and that you're enjoying your new lifestyle even though it makes eating at social events somewhat tricky....and that's why you have to bring your own food.

It'll get easier over time--you'll see.

Share this post


Link to post
Share on other sites

My diagnosis was a complete surprise. I didn't even know I had had a biopsy until I got a call with the results. No, I didn't know what celiac was before that and many people don't. I don't expect people to know what it is. I don't have a problem explaining it either, or with general ignorance. It is the insensitivity that bothers me. "I'd just kill myself if I had that!" Really? So you just said to me that my life is literally not worth living without the same bread you eat? I call people on exactly that too. I am so done with insensitive pricks. And that is what they are. Would someone respond to another person's cancer diagnosis with "I'd just kill myself if I had to go through chemo!"? No!!! So why are celiacs, and we alone, treated like this? It isn't right and I tell people that they should have a little more sensitivity instead making insensitive comments they wouldn't dare make to someone with pretty much any other disease or illness. I actually had someone with cancer make that exact comment to me, and when I reversed it on her she realized how incredibly rude she was being.

This isn't some fad. This isn't some made up disease. This isn't any less serious than any other disease just because we can't pop a pill for it. I'm actually thankful that it is so easily treatable. At any rate, my go to at this point is "That is an incredible level of ignorance. You wouldn't dare be that insensitive to someone with any other equally serious illness that is treated with medication instead of a special diet. This is far more serious than X (X being whatever they brought up, such as a tummy ache as you mentioned) and I suggest that before you go around offending more people with your ignorance you educate yourself about the disease or stick with a simple how are you feeling today?" Is it harsh? Yes, but like I said I'm way beyond done with the insensitive people. And I reserve this only for the truly insensitive, not for simple ignorance.

Share this post


Link to post
Share on other sites

From my experience, my responses seem to depend on WHO I am talking to. If they are just nosy and think it is weird, I keep it short and simple. "I get really sick if I eat bread." "I throw up." or "It's like getting food poisoned." or "I eat healthy food." or "I'm 'allergic' to wheat." If they are just plain nosy, I don't owe them any explanation. I will eat and do what is best for me and it is none of their business!! Some are just curious because you eat different things, but if they show genuine care and concern, I will might take the opportunity to 'educate' them on the topic. I also do my best to not make it a big deal when talking to friends, but that's just me. Yes, I am VERY serious about the gluten-free lifestyle I now live. However, I feel like if I was to make it a big deal, then they would make it a big deal and I would feel even more socially isolated since food is just about at every social event. When it comes to dining out, on the other hand, definitely speak up to ask questions to the waiter or manager and those around you will be able to tell how important it is to be serious about your health.

On my journey to healing (still there), I realize that no one will ever understand how I feel or will they ever know what it is like having celiac. It is frustrating. On the other hand, I can only hope that I (along with others on a gluten-free/SCD/Paleo diet for health reasons) serve as an inspiration to others. It is by no means easy and if anything, I hope that somehow their heart is stirred with thankfulness that they can eat those delicious foods that I can't rather than 'feeling-sorry-for-the-girl-who-can't-eat-a-cupcake.'

You can keep your responses as short or long as you want. Take charge of the conversation and point it whichever direction you choose, even if that means changing the subject (they'll get the point!). Share only what makes you comfortable! At the beginning, food and celiac is a pretty sensitive topic (for me, it still is sometimes) and those around you should be able to pick that up. I remember asking your same question when I was first diagnosed (over a year ago). It'll come with time. There will always be people asking questions, so it is a 'skill,' if you will, that will develop. Hang in there.

Share this post


Link to post
Share on other sites

As a Celiac/Gluten Intolerant person, we're all going to get questions and deal with ignorance. I'm one of those people who tends to go on and on about it if you get me going. But then again, it's usually my fault with the "I can't eat any of this" or "Yay! Gluten free [insert exciting food here]"

Best thing is to keep it simple and factual. No, it's not an allergy. It's an auto-immune disease (it's important to emphasise that it IS and DISEASE. You can't do anything about it) that damages the intestines, prevents absorptions of nutrience, and can cause all kinds of fun problems from digestive issues to cancer. The only way to treat it is to not eat ANY gluten whatsoever, even the tiniest crumb, or food prepared on the same surfaces or cooked in the same oil as gluten. It's also important to say that it's not like an anaphalatic reaction (for most people), so it's not like you'll keel over on the spot, but the symptoms can last several days and damage can take a few weeks to heal.

But also say that eating gluten free makes you a happier and healthier person. I always say "Either the gluten will kill me, or I'll kill someone else in the process. Whichever happens first" (ie: you don't want to deal with me after a glutening, therefore, you don't want me to accidentally eat any of it. Comprende?)

Most people will understand, or at least accept your explanation. There are some ass%$@#s out there, but as long as their ignorance doesn't interfere with your will-power, then all should be fine. Eating gluten free is tough, but it's not so bad when you know it keeps you happy

So, stand your ground, look at it as an opportunity to educate, but don't feel you have to explain anything unless you don't want to (unless they're the one cooking/serving, in which case, a flat-out "What's in it? Is there any? No, I can't eat that" and that's that, is necessary.

Good luck and happy healing!

Share this post


Link to post
Share on other sites
Ads by Google:


Thanks everyone! I am sure my frustrations have to do with more than just questions from others. I am still adjusting and learning...and waiting to feel better. Anyway, my friend who always asks how my tummy is texted again today. I took her question as genuine concern and responded with a thorough explanation. I got a "wow" response. I feel better thinking that she is really concerned and not insensitive, and I am looking forward to explaining it to the lady at work who "would die if she couldn't eat a donut."

Share this post


Link to post
Share on other sites

I find folks don't necessarily want to much detail. I tend to brush it off and say it's like having a very bad flu. For a week. This works well for folks who say 'don't you miss it' or 'just try it, have a bite' whatever. Would you eat something if it took you out & gave you ALL the symtpoms of a bad flu???? Stomach cramps & the work (leave the rest to their imagination, most people have had a flu...eww).

Chances are they know someone who is sensitive - and I wil point out the difference. Sensitive *can* be like lactose intolerance - you can handle a bit of gluten, I have zero tolerance, even a bit makes me sick.

IMHO, best way for folks to get it is to see I never, ever eat it - it's not a diet fad (oh, don't get me started), it's a very real condition with consequences!

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,146
    • Total Posts
      939,917
  • Member Statistics

    • Total Members
      66,132
    • Most Online
      3,093

    Newest Member
    Whhyyy
    Joined
  • Popular Now

  • Topics

  • Posts

    • Please check the date on post, you just responded and tried talking to a person from 7 years ago. On consideration to the subject Poatoes are a huge flare factor for my UC and cause my blood sugar to sky rocket...I am not even diabetic but for some reason potatoes (hash browns) that I tried a few months ago with some eggs shot it up over 400. not even a control test with table sugar managed that.
    • Have you tried eliminating high glycemic foods? Fruits, added sugars, starchy grains, potatoes. etc? Also adding in slow digesting fibers and fats can prevent insulin spikes, MCT oil is also known to help and protein. Many find consuming nuts and seeds higher in fiber early on in the meal or before a meal can slow down insulin responses and prevent spikes. I always tend to eat a hand full of whole shell pumpkin seeds, hemp seeds, cocoa nibs, etc. while fixing my food, this gets me starting to feel fuller sooner, and seems to help in over all down the road. I know I had some references somewhere to these. I know I read somewhere about the antioxidants in in whole shell seeds like pumpkin and hemp also helped the body regulate insulin levels.
    • Dear AWOL Cast Iron Stomach, Your husband is right bread is bad for you. Of course it's more than bread and gluten, until now it was amateur hour trying to self diagnose and tame this "lion". However they let you down. You slipped through the cracks over and over again it is not your fault your not the Dr. You made mistakes and errors acting like a celiac , not knowing for sure you were, and not feeling like you could fully claim to be or reach out for support . Now you know your husband was closer than any Dr. up until now to determine your illness. Now something is in your record, now hopefully you will be dismissed less,respected more, maybe they will realize its an actual condition going on- not all in your head. Will they? Who knows! Do you care? This is now official, now explained, you not only have to give up gluten, but milk, and corn. In fact give up 98% of processed anything. The cluster of lifetime symptoms were not  "just you", "in your head", "you are not a difficult patient", "when the Dr or nurse looks at you like a nut job you don't have to feel the dismissiveness and condescension. It's an illness and nothing to be shameful of  what is shameful is they and their colleagues missed you failed you. In fact being missed for 4 decades is unjust to you. You were missed time and time again from age 5 to 43, decade after decade after decade, symptom after symptom. It's not that you didn't try from the 5 year old begging to go to the Dr, to the 20 going to the hospital again for another bout of gastroenteritis hoping to get an IV, to the thirty year old saying something is wrong why is this happening, to the forty something a restaurant fed me gluten when I asked for gluten-free, I have been gluten free for 3 1/2 years ,  I have more symptoms and pain than before . I felt so good for those gluten-free years- please help me-make it stop. So many things explained it makes you experience a range of emotions. Grateful: Relief and gratefulness someone finally agreed to send you to someone to test you. She saw past the other diagnosis' and the albatross IBS diagnosis. All the ages and stages of symptoms are explained they all fit. Everyone of them! Someone else also has had them. You are not alone. Read the forum-you fit like a glove. Anger: Anger for the way you have been treated by the medical community, family, some ex boyfriends, friends and coworkers. Anger for the length of time you endured this. Hurt: Hurt for the times people said unkind things to you when you were symptomatic or flaring . you are experiencing symptoms that change your body people are rude to congratulate you on a "pregnancy" you didn't announce or ask why you are not slim when you hardly eat. you are not over emotional -  you are suffering from neuro symptoms, you are not making this up for attention Sad & Guilty: Can I work again? Do I want to work again? What kind of work can I do now? Can I find a job and work PT from home? You didn't envision this your husband having to be sole bread winner now what? I am overwhelmed thinking about this-stop? You now have closure and know how and why you lost your first pregnancy. You now know why you were high risk, complications,  with your children in Pregnancy & Delivery that they couldn't be explained back then It explains why in pregnancy you lost weight and why your morning sickness was extreme and seemed to last longer than anyone you knew,  that your Puppp rash was likely misdiagnosed DH It is not your fault none of it. Please forgive yourself for what you did not know. Your children forgive you. Believe them when they say its not your fault. You can cry, but you can no longer blame yourself. You are a good mother just one with an illness your children will learn to accept. Withdrawn: Why are you withdrawing from your husband? Should you ask him if he wants a divorce? Should you push him away? You didn't know before marriage what was happening you knew something autoimmune was brewing shortly after, but nothing showed on tests. Was this unfair to do to him? Doesn't he deserve someone better? Someone well? Now you can't retire and travel the world as society retirement cliché dictates. Can you afford this illness ? How will this financially impact your spouse, your family?. Why did you do this to this poor man? You are so selfish, you wanted marriage and kids, but was this fair to them? Don't your kids deserve a healthier mom? How will this impact them? Oh my gosh are they going to get this too? Will they grow to resent you? Your illness and diet has taken over their lives! Oh gosh no one say hi to me-please. I hate people and I am too sick to pretend and be fake friendly today. I don't want to tell you I am ill. I don't want to talk about this. I have to absorb this. I hate you people for being healthy. Don't tell me I don't look well. I will snap, I don't want to snap, I am irritable ,and don't feel well. Just keep giving off the unapproachable vibe keep them away.  Am I strong enough to do this? Acceptance: Calm down the inflammation, lack of nutrients, and GI damage is messing with your head. Your husband said for better for worse. Your kids have no choice you are their mother and you are a good mom -you have always been, always will be even on your worst day. If they get this they will be ok. You are strong enough to do this you are just ill and most importantly you must remain here in case they get this so you can guide them and be there for them. Got it? Go on the forum you are not alone it will be ok. You will get this lion back in the cage and manage it. It will be ok. If you can't travel in retirement one day you will find other hobbies or things to occupy your time. He's not going to leave you over this. If he does it will be ok. You'll manage-you always do. You have an answer, you knew it was coming, keep reading, learning, seeking support, and one day it will all work out. You will process all this and will be at peace-until then keep going and above all AVOID GLUTEN!    
    • I know for certain gastritis  is one of the main reasons I had the scope. That and my EOE symptoms . If it wasn’t for those I would have never been diagnosed 
    • Sometimes when those chilly winds begin to blow, and the temperatures fall, the days get visibly shorter, what we need and what we want is comfort food. Well, look no further than this simple, easy twist on scalloped potatoes. A little ham and a bit of cheese work wonders to turn that old favorite into a meal all its own. View the full article
  • Upcoming Events