Frustrated woman with gluten-containing foods

5 Things People With Celiac Disease Need You to Understand

One of the things I struggle with since being diagnosed with celiac disease is explaining my diet needs to others. Even after twelve years I hear myself apologizing for being a pain and having to request gluten-free food options. I find myself getting angry and impatient with people because I have to explain again that I can’t just eat the filling out of the pie and I can’t eat the cheese dip after someone has dipped their wheat cracker into it.

I found this article today at celiac.com and hope they don’t mind me sharing these five things that people with celiac disease need their friends and relatives to understand about this illness.

1. We are NOT on a Fad Diet — Celiac disease is not some vague, make-believe condition. Celiac disease is a potentially serious immune disorder that, if left untreated, can lead to a very deadly types of stomach, intestinal, and other cancers. Just because a bunch of people seem to think that gluten is the new high fructose corn syrup, doesn’t mean that I’m one of them. Remember, for people with celiac disease, eating a gluten-free diet is no joke and is the only way for them to stay healthy.

2. We Won’t Be Getting Over It — Currently, there is no cure for celiac disease, and the only treatment is a gluten-free diet. That’s the only way to avoid the gut damage, lower risks for other types of auto-immune conditions, and minimize the risk of various types of cancer associated with celiac disease.

3. Celiac Disease is a Serious Condition — Since the effects of untreated celiac disease unfold slowly over time, it’s tempting for some people to look at celiac disease as a minor inconvenience. However, it’s important to understand that celiac disease is a potentially serious autoimmune disorder that, if left untreated, can leave people susceptible to other autoimmune conditions, and to deadly types of stomach, intestinal, and other cancers.

4. A ‘Little Gluten’ Might Hurt Me — There’s no such thing as ‘a little gluten’ to people with celiac disease. Gut damage happens with as little as 20 parts of gluten per million. That is a microscopic amount. A ‘gluten-free’ diet means no gluten. Period.

5. When in Doubt, Ask — If you’re not sure if I can safely eat a certain ingredient, or a certain food, just ask. Figuring out what is or is not gluten-free can be tricky, even for me. So, it’s best to ask if you’re not positive.

Are there other items you would add to this list? Or just feel free to vent in the comments if you like – I get it.

 

Milo graphic

Milo says….

I wanted Maizy to play FRISBIE with me, but she was busy looking at that computer! Then I got in her lap so she could see me better. She said a 40-lb dog is NOT a lap dog. How can I make her UNDERSTAND that I NEED to play Frisbie?

21 thoughts on “5 Things People With Celiac Disease Need You to Understand

  1. I’m not sure people can understand unless they experience it themselves. Let’s face it there is a lot of learn and I know I didn’t learn it all overnight. Seven years in I’m still leaning. At first I was upset when people couldn’t feed me. But then my sister in law said, “you are welcome here any time, but I can’t guarantee I will be able to feed you.” At first I was really angry. Then I realized she was giving me permission to take care of myself. I don’t spend a lot of time arguing or explaining things to people who just don’t get it. I take responsibility for myself and my own needs and things are much easier.

  2. It’s really unfortunate for real celiac sufferers that going gluten-free also happens to be a diet fad. Hopefully when the fad is over, you can go back to being taken seriously and for gluten-fre to marked clearly on every restaurant menu.

    I have another auto immune disease and while I can eat gluten, it is better if I do not. So I usually order gluten-free if it’s easily available but when it is not, I eat gluten. I really feel for people who cannot eat gluten not out of choice but for health.

    • I think the fad has been useful to get more products on the market, but it does seem to cause more confusion about celiac disease. I hope you’re right about being taken seriously when it is over!

  3. Eyes do glaze over when you begin to explain your dietary needs, and while I think the gluten-free fad has advantages, I have also found that some restaurants in order to tap into the GF customer base, will have menu items without GF ingredients, but really don’t want to or know to create a safe kitchen and a knowledgeable staff. Glad I found your blog!

  4. My friend took someone’s flour tortilla shells and dipped them into the broth of our chicken thigh fajita meat the other day at the camp I live/work at full-time…deeming it something I could no longer eat. She said mid-dip she realized she was doing something wrong but it was already too late, she felt really bad but it was already done.

    Someone said, Oh, it’s no big deal, you can just eat the meat out of it… No. No, I can’t. I have tried eating things like that. Like going to Subway and eating their salad after the people have touched all the veggies after touching bread….can’t do it. Makes me sick every time! People think I’m overreacting all the time or I do it for attention…no, I do it because if I don’t I’m miserable and I don’t like being miserable, no one does!

    • I’m glad you found out about the fajita meat before you ate it. I’m always afraid of things like that happening and not knowing until it’s too late. Thanks for the post!

  5. Great post and thank you for raising this important issue. People generally take food issues too lightly and we need to continuously speak up until they understand. Health is worth it.

    Thanks for stopping by my blog too!

  6. I loved your article as I too wished ppl understood this. The other day I was at a banquet. I informed the ppl running the event that I needed a gluten free meal. In fact, the host requested submissions of ppl with special needs. When it came to dinner I identified myself to my server. She assured me she would tell her captain and take care of my meal. All the meals were served and I waited and waited and waited…. She never came back! I had a meal, but it was the same as everyone else and I sat there awkwardly not eating because I wasn’t sure if it was safe. I just thought that any minute the server would come back, but she never did! I was tired and wasn’t in the mood to make a fuss.

    By the way, Milo is so adorable and I love dogs so was an added bonus to the story.

  7. Found out about my gluten allergy after 50 years of suffering. I’m not sure
    I have Celiac, but I know that a tiny bit of gluten throws me into an unwelcome, nasty episode. Yes, some people think I just want to make their day more complicated. They don’t get it. Life goes on. It’s nice to know I’m not the only one that must find gluten-free food. Blessings to you…

  8. I have recently been diagnosed with this disease. I had not really taken it seriously because my doc didn’t spend a lot of time explaining it to me. I guess she figured I’d Google it, but after reading this, I know I need to go back and make her talk to me about it because as you said, it’s more than just a fad diet change. And most definitely, Yes. Trying to figure out what I can and cant eat now is a nightmare. Do you know of any good places on the internet where I can find meal plans for Celiac’s? If I didn’t express my feelings I’d be locked up insane, I’m glad you started a new tradition in your family, those three words are vital to hear, as you realized when you hear your little one practice saying it and it never gets old to hear it. ❤ Ps..I Love the "Milo says…" at the end, that's cute and unique!

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