After reading Alysa’s post “A Lightbulb Celiac Moment“, last week, I was inspired to write something about the topic as well. It is so true and so important that celiacs stop explaining their disease as an allergy just to make it “easier” for non-celiacs to understand. I have done it and so have many others. It is an innocent attempt to “dumb it down” and quickly get over the awkward “why I can’t eat that” explanation. Really though, it is only furthering the ignorance and misunderstanding of the severity of celiac disease.
As Alysa said, “Because I have been using the word “allergy” I have missed out on opportunities to educate and advocate for the celiac community.” She hit the nail on the head with that one. We should be educating every moment we can! It will only bring about the awareness we crave and the safety we need. We are all doing a disservice to the celiac community when we call it an allergy.
So, you may be wondering what the difference is anyway? An allergy is when a specific food is ingested that triggers a severe immune response by the body, mistaking the food as a harmful invader like a virus or bacteria. Thus, the body can react mildly (with sneezing, coughing, itching, hives) or severely (anaphylaxis, trouble breathing, swelling of the tongue or mouth). With allergies, you have the potential to grow out of them, but the foods that trigger the response should always be avoided, no matter the severity. An Epi-Pen is usually given as well.
MY LATEST VIDEOSWhen it comes to celiac disease, this is an autoimmune disease. An autoimmune disease is when your immune system attacks you own healthy body cells, damaging the cells, tissues, and organs. So when gluten (in the case of celiac disease) is ingested, the body attacks itself causing severe damage to the small intestine and villi (little “hair-like” structures lining the intestine). This causes malabsorption of essential nutrients, vitamins, minerals, etc. when food is eaten as long as gluten stays in the diet. Over time this results in not only present symptoms (pain, diarrhea, migraines, etc.), but severe long-term health consequences such as anemia, osteoporosis, infertility, deficiencies, seizures, tumors, cancer, etc.
The ONLY way to effectively “treat” celiac disease is by adhering to a strict gluten-free diet for life. So when we tell people that celiac is an allergy to gluten, that is wrong. It is an autoimmune disease just as the name says. It is also a genetic disease, meaning out genes (DNA) is altered. If these genes manifest into celiac, then it won’t just go away.
When we find ourselves in the position of revealing our need to be gluten-free, whether at a restaurant or to a new friend, we must tell them the truth. Even though this may take a few more minutes to explain and a little more work for them to understand, we owe it to ourselves and other celiacs to advocate for our disease. Alysa also said that when using the word allergy, we know people will be more vigilant about making sure they take all the right precautions to keep gluten away, but if we start explaining out disease for what it truly is, people will start taking this name, “celiac disease” just as serious and important. Removing the negative media stigmas around gluten and educating society on what can be a “life or death” health condition.
Both allergies and autoimmune diseases are extremely serious, but they are different and should be explained as such. Let’s all vow to provide the real information when educating and discussing our health conditions with those that do not yet know. Do it for yourself, do it for the other person’s knowledge, and do it for the community.
So tell me:
+ Have you simply thrown out the word “allergy” because you know it will get the correct response?
+ What do you find most difficult when explaining celiac disease to someone?
+ If you don’t have celiac disease, what confuses you about it?
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I couldn’t agree with this more! My mom, sister, and niece are all celiacs, thankfully it skipped me, but I have a little one on the way and know there is a good chance the baby will have it too. I’m so thankful that more and more attention is being brought to the truth about exactly what celiac disease really is.
All we can do it keep promoting and educating the true facts and raise awareness. Celiac is a serious disease and deserves the same acknowledgment and understanding as any other ailment.
I never realized it was an autoimmune disease. Learn something new everyday don’t ya? Thanks for the info.
Wow. What did you think disease meant?
Wow. I think I learned something new. Thanks for linking up to Funtastic Friday. Hope to see you again this week.
Great!
I’m totally guilty of using the word allergy when I know people will be more careful about things (dairy especially as I am pretty sensitive to it). Thanks for clearing this up – I knew this about celiac disease but kind of forgot as it really is just easier to say it’s an allergy. Although I do not have celiac disease myself, I actually have a thyroid condition that is auto-immune that elicites a similar response when I have gluten. It is important to note the distinction and I’m glad you are bringing awareness to it.
Autoimmune diseases are so misunderstood and people are so misinformed. We each have the power (and responsibility) to stop that when we can!
Well you taught me something! I’ve known the very basics of what celiac disease is but never fully understood what it did to the body, especially in the long run. It’s interesting to read the difference between allergies and autoimmune diseases. I can’t imagine the struggle of finding food everyday while being extremely cautious of gluten. Thanks for sharing. 🙂
It’s not so hard. Once you know it’s the only way you can LIVE, things fall into place and you quickly learn!
Hi Rebecca,
Just a note to let you know that I have chosen your post as one of my features for this weeks Real Food Fridays which goes live Thursday @ 7pm EST. Thanks for being part of Real Food Fridays blog hop!
Thanks!
Thank you for taking the time to share this information. We are so glad you shared with us at the Merry Monday party! We can’t wait to see what you’ve been up to at our next party!
Thanks for reading!
There’s so much truth to what you’ve written. As someone with gluten and dairy allergies, I’m often on the other side of this. When I say I’m allergic, it’s often assumed I have celiac disease. I always explain that no, I have an allergy, and sometimes explain the difference (but often don’t bother). I find it amazing how many people don’t know the difference.
And we should all do our part in stopping that confused, when we can and the best we can!
I have to admit I have thrown around the word allergy/sensitivity when talking about my Hashimoto’s. Since you have an autoimmune disease you probably already know what I am talking about but with Hashimoto’s gluten triggers a reaction against the thyroid. I haven’t thought about the points that you made here before, but I will definitely be correcting myself in the future. Thanks!!
Yes! It seems easier, but we shouldn’t always take the easy way out :/
I want to like your post 1000 times. I do not have Celiac disease, but I’m tired of the bandwagon. Not because I do not think Celiac is a real disease. I do. But when tons of people who have convinced themselves that they are now “allergic” to something that they have been able to consume their entire lives with no problems, it makes it harder for those who do suffer. It makes Celiac a fashion allergy. But once this fad’s season is over, sufferers will still be here facing their challenges while the masses have moved on to the next thing.
I guess I get irritated because it trivializes the disease which is very real for a lot of people. I appreciate your simple yet very informative post.
Thanks! But that’s not the point of this post. It was advocating the real information. An autoimmune disease is just different than a food allergy. This post had nothing to do with the fad status of being gluten-free.
So glad to find you! It took us a long time to find out gluten was our culprit. Thanks for sharing–found you at Weekend Retreat. 🙂
Thanks for reading, Lynn!
good informaon.
found this on Foodie Friends Friday
Thanks!
This is a fabulous post. One of my best friend’s son has celiac and it’s not fun! This is a horrible disease and people need to understand how a tiny breadcrumb on a kitchen counter can trigger a reaction.
Just like an allergy!
Rebecca, this is a fantastic read! I am actually waiting on bloodwork to come back to diagnose me (or not) with CD. You have made the disease easy to understand, which I need right now with how overwhelming the onslaught of information has been in the past couple of days. Thanks for writing such a thoughtful post!
You’re welcome Amanda! Let me know if I can help with any questions or tips in any way!
Hi Rebecca,
Great post. I find its much easier to make things simple when trying to explain to people so sometime saying it an allergy make it possible for them to understand. As surprising as it is many people just have no idea what Celiac Disease is or what is does to the body. To further complicate things some times Celiac sufferers also have MCS (multiple chemical sensitivities) which is also an autoimmune disease and I have both among many other food allergies. If you tired to explain this to people they look at you like you have 2 heads – they just don’t understand. I have even read that people with Celiac Disease and/or MCS have physiological problems that are causing their problem I find that very sad that when someone doesn’t understand something they tag it with a mental disorder.
Just want to say thank you for sharing this on Real Food Fridays. It is so important that people understand the intense health problem that Celiac Disease is and education is the key. Pinned & twitted.
It is and I wish we didn’t have to “simplify” when talking about our disease. It isn’t fair to nay of us!
Fantastic article! Awareness & education is key! I have suffered for years with all the symptoms of Celiac, not knowing what it was until recently. The sad part is, not one single doctor I’ve seen has suggested testing for the disease. If it wasn’t for awesome people like you, I would still be unaware. Thank you for writing this post.
Glad it could brighten you day!
Hi Rebecca – Thank you for writing this article and for the information. I’m coming in from a different perspective… listening to “mainstream” thought that GF was only for people with Celiac Disease and everyone else is jumping on the GF bandwagon as the latest “cool” food fad. I was diagnosed with Hashi’s after breast cancer treatment ended, and despite the meds haven’t been getting well. After much researching, I’ve learned there is a huge AI community with different food protocols from GF to Paleo to AIP. I’ve been GF for 7 days now (minus one piece of birthday cake please don’t judge) and rumor has it I should start feeling better in another few weeks. I’m definitely going to be trying some of your recipes and reading more of your articles… regardless of what it’s called and what we have to deal with, we are all in this together! Hugs, Holly
A little confused, but hope I helped in some way!
My husband is gluten sensitive and we usually find it simplest just to say he can’t have gluten because his body doesn’t digest it well.
Of course, explaining what gluten is is another thing….
Having a sensitivity or intolerance is another issue within itself as well.
SO so interesting!! About time someone put that out there! Especially because unless you are a celiac or are close to someone who is, chances are you probably don’t know much about it at all.
To be honest, I feel like my knowledge of celiac is quite limited, and I always saw it as more of an allergy than an autoimmune disease. Not anymore!
{Teffy’s Perks} X
Well I’m glad I could clear it up for you then! Thanks Teffy!
Sooo very much agreed with you! I can definitely understand why a lot of people just refer to it as an allergy, but it definitely does a disservice to celiac disease and furthers the misunderstanding! Small steps! Hopefully people will come around and learn to understand how serious it is!
Yea, it’s sad that such a serious disease isn’t taken as seriously as an allergy is….all because of media hype and false public knowledge.
Very interesting! I don’t have celiac disease though I was tested for it last year. The doctors were testing me because I’m always bloated (as in I look pregnant) and they couldn’t help me. No answers! So I need to go back or somewhere else and maybe get another blood test or something because it can’t be normal to blow up in bloatedness just from eating oatmeal for breakfast.
Testing for Celiac is not very reliable. But you probably don’t have an allergy, maybe an intolerance to something.
great post! Autoimmune diseases need to be properly managed and not treated like an allergy. This is fantastic information!
We just need to talk about what it really is and stop taking the easy way out!
I have to admit, I definitely throw in the old allergy line when I’m being lazy and don’t feel like explaining Coeliac disease to someone (or if they’re being arrogant and I just want to get away from them) – but I also probably do it because I have actual allergies and intolerances and it’s easy just to lump everything into one than say “well I didn’t know I had Coeliac disease, an autoimmune disease, until I was 19 years old and that was after five years of being incredibly ill blahblahblah stomach damage blahblahblah so my stomach hates everything and I can’t eat blahblahblah” haha
Haha! Yes Kristy! I do that too. I just lump all the allergies and intolerances together to get it over with and move on 😛
Thank you for the clarification. This is helpful when serving celiac people, as I have 3 or 4 people in my extended family who are Celiac.
It’s just about advocating correctly so people know the difference.
I always take the time to explain celiac disease to friends, family, and if it comes up in conversation with other people. I’m not one to want to bring attention to myself at restaurants, and I already get annoyed having to be the “special one,” so while I tell the waiter I have celiac, I follow it up with “a severe gluten allergy.” I don’t think it’s bad in that context, as long as my food is safe to eat.
I agree, but I also agree with Alysa in the fact that we need to work on stopping the ignorance around the disease.
This is great, Rebecca- I learned something from reading this and I’m sure lots of other people did, too. I understand how it could be easier to say ‘I have an allergy’, but you’re right, it’s doing a disservice and not helping to further understanding of celiac disease. Thank you for speaking up!
It will take work, but it’s the right thing to do! Thanks Christy! XOXO
There is so much that is misunderstood about Celiac Disease! My best friend has it and we learned a lot about it as we both studied biology in school. People choose to be ignorant about it, though…and judgmental, which I’ll never understand!
Right. It’s hard, but we can do our part by at least calling it what it is!
Well said friend
Thanks 🙂
Rebecca, this was such a well written post and so informative and I read it with pangs of guilt throughout because I am very guilty of saying I am allergic to gluten instead of celiac disease when I feel as if my needs are not being taken seriously in a public place. often times if you use the word allergy servers or those handling your food will use a red sticker or an allergy alert on your order but when you say celiac disease this does not happen. Some places will mark you down as allergy even if you say celiac disease just ensure your safety in the kitchen so I guess it goes both ways with using the proper terminology. I understand where you’re coming from but I would much rather tell a white lie and sure that I’m safe then say celiac disease and be sorry later on
I know, when I read Alysa’s post, I thought back to the times when yes I said I have Celiac, but I explained it further by terming it a food allergy. It is easier, but that’s why we need to take the hard way and turn this misconception around so that we CAN just say we have Celiac DISEASE! A work in progress for sure!
thanks for sharing – very educational! stop by and chat ♥ http://storybookapothecary.com 🙂
Thank you Tianna!
I heard people talk about celiac disease verses a gluten intolerance. I assume this to mean some people have a intolerance and choose to eat gluten-free but aren’t diagnosed with celiac’s. Is this true or does this make sense?
Yes, an intolerance is a whole other ball-game, haha! Celiac Disease is the actual medical diagnosis of the autoimmune disease. An intolerance isn’t an allergy either.
Larissa, I’m severely gluten-intolerant, but I tested negative for CD and a wheat/gluten allergy {though my test for CD was not handled correctly, so I’m not 100% sure of its accuracy and I didn’t want to retry, which would have meant 6 more weeks of eating gluten and feeling awful}. The doc then just concluded I’m hyper sensitive and told me to stay away, most especially because it triggers other autoimmune conditions for me.
I think personally that “gluten-intolerance” is a term used when modern medicine can’t explain why you can’t eat gluten {kind of like how IBS is a diagnosis when they can’t explain/label what’s happening to you by any other name…}. People often forget how limited modern medicine is and that it really doesn’t have all the answers or a full understanding of the human body… We grow up relying on it to have the answers, but I think reality is quite different and there are many things that go undiagnosed for that reason + new conditions of all kinds develop daily and it’ll take a long time for modern medicine to catch up.
But I’d say the “choosing not to eat gluten” is about as much of a choice for me as it is for someone with CD or an allergy {i.e. it’s not really an option!}.
Great post as always! I totally agree with the removal of allergy in relation to celiac disease. It has the word disease in it fcor crying out loud! From now on if someone asks me about celiac disease (which I recently was although I’m not celiac) I’ll use proper terminology rather than the watered down version. Have a great day!
Thanks Ana! It’s important to make the distinction, even if it takes a bit more explaining!
Popping over from Wake Up Wednesday =) Good read. I have Crohn’s disease and I understand the frustration. I’ve been pushing off writing a good, in depth post about Crohn’s because I just didn’t know where to start without frustrating myself. You’ve given me a bit of inspiration.
I was reading a great article on how confusing autoimmune diseases are and the myths around them. It is hard to get all the info out there, there is just so much to say!
So true! And the diseases present themselves so differently in each person… one day people will understand…
We can only keep advocating the correct information!
I have a rare form of cystic fibrosis that was recently diagnosed. For years, the doctors thought it was Celiac disease (because of my severe symptoms, even though biopsy after biopsy was negative.) I could not stand when people said, well there is just a little wheat in that–you should be okay! It is a serious disease not to be taken lightly–not that an allergy is less serious, it is just possible to out grow (which my son did at age of 6).
YES! Exactly, my friend! (A biopsy was what showed it for me). But yes, when you have Celiac you CAN NOT consume any form of gluten. You can’t “pick the croutons” off the salad. Nor can someone with a food allergy to wheat.
New reader here… were you diagnosed by a doctor with celiac disease? What was the process to get diagnosed like?
Many people go undiagnosed because Celiac testing is very “new and not veery good yet”. But there are blood tests as well as going the official biopsy of the small intestine (which is more effective). Read my post on the medical info here!
It’s great that you are advocating for the celiac community Rebecca! There is so much misinformation out there!
Right! And we Celiacs should do our part and actually explain what Celiac is!
I completely agree it is important to communicate accurately so more will understand. I’ve never been tested for CD, but my one thing above all else that I react to badly is gluten containing grains. I don’t know if it’s more of a FODMAP issue or if there’s a chance it’s CD (my dad has had many symptoms that may be related, but hasn’t been tested either) so when I’m out to eat I tell them I need to eat strictly gluten free for health reasons but don’t use the word allergy or anything else. I don’t like the idea of throwing around the word allergy because it seems like a disservice to people with actual severe allergies.
Yes! It’s a disservice to people with food allergies and with autoimmune diseases like Celiac. I have both, Celiac and a food allergy to soy so I have to use both, but need to keep them separate as well!
Celiac is genetic and hard to get accurate test results for, but you may have it if other family members have symptoms as well.
Love your clarification of this. So many people out there are misinformed. I tend to stay away from the term “allergy”, unless of course, it is necessary.
They are just two different things. Both severe, but different!
This is so great and helpful! I don’t have celiac disease but know many people who do and know how serious it is. Before one of my friends was officially diagnosed doctors thought that she might have had cancer because her symptoms were so severe. Thanks for helping me think differently about this disease and to be more aware of how I talk to people about it 🙂
Thanks Elizabeth! It is a serious health issue and some are lucky enough to be diagnosed, while others suffer silently.
I don’t have celiac but I have a related autoimmune disease, type 1 diabetes. I spend a lot of time educating people on the difference between type 1 and type 2. Frustrating but necessary.
O yes! That must be really hard. The difference between the two is so important and it is frustrating.
My MIL has Celiac and my husband has Crohn’s so I fully understand what you’re saying! Lately it’s gotten more frustrating with the gluten free fad.
Yes! That’s why when we say allergy, we know people will take us more seriously, but really we need to advocate for our autoimmune disease!
This is such a fantastic, educational, informative post, Rebecca. I’ll share this around to my friends with celiac disease, I think they’ll appreciate being able to share this with people they know to help explain it!
Thank you Jess! We all just need to keep getting the “right” information out to everyone!
I can definitely relate. Food allergy gets way more attention so it is just easier at times… ya know?
It’s just an easier “concept” for people to understand!
YES! so glad you posted this. So many don’t even know what celiac is, a real disease!
We’ve got to advocate correctly!