So, I wondered if the same things that bother me, bother other people who have celiac or are gluten intolerant. I asked for people to share what their pet peeves are on a couple of pages that are for those with celiac and gluten intolerance. These are the 10 things we all had in common and struggle with. The gluten free struggle is real!
1. “I know someone who has celiac really bad!”, or “You must have it really bad.”
Anyone with celiac has it really bad! Severity of symptoms is not an indication of how bad you have celiac! People with relatively few, mild or no symptoms to speak of may have worse intestinal damage than someone with severe symptoms! Unfortunately, the only way to know just how bad it is, is with a biopsy of the small intestine.
I especially hate this from someone I don’t know. #1 you don’t know me. You don’t know what I have been through or what I go through if I get gluten. I want to eat out, have treats, and try new places and things, too! I ask so many questions about the food, how it is prepared, etc because I have to watch out for my health. (This is not in my comfort zone! Before my celiac diagnosis I was the one who would eat without complaining that my food was wrong. My husband is my best advocate in helping me with this and in reality he’s usually the one asking all the questions! Love him!)
I may have to walk out of this new establishment disappointed because I can’t safely eat here. I stand in line stressed and worried that I won’t be able to eat anything. There are one or 2 possibilities on the menu and everything I can’t have sounds amazing! I listen to you, your children, your date as you excitedly talk about what you want to try and I wonder if it is safe for me to have a vanilla sundae with hot fudge. Oh, how I miss the days of being able to go anywhere and try anything that sounded yummy, fun or exciting.
I think I cried when I found out Outback had a gluten free dessert and it is the best dessert on the menu! Chocolate Thunder from Down Under! Unfortunately they don’t have what is gf online but it is marked in their menus when you go in. They have always been very knowledgeable when we have gone.
2. Your “friend”
Similar to the above but their friend doesn’t have it that bad or is cured!
My friend doesn’t have it that bad, my friend can eat gluten sometimes, some gluten doesn’t bother my friend, my friend was cured from celiac. . .
I have news for you and your friend! Neither one of you knows or understands celiac!
You are getting really bad misinformation and if you are telling me this to try and help me, you aren’t. Your friend more than likely hasn’t had any follow up biopsies to prove their self “cure”. More on this in #3!
3. There’s a cure for celiac disease
There’s always someone who knows someone who was “cured” from celiac disease; usually by a chiropractor. The problem with this is that these people who are supposedly “cured” have never had follow up biopsies to prove this diagnosis. The questions I have are:
Is it in remission?
Are the symptoms being masked while damage is being done to the body?
How bad is it going to be for this person in 1, 5, or 10 years?
Is their risk of non-hodgkins lymphoma being raised to 5x the rest of the population and they don’t know? Do they know that this is one of the issues of untreated celiac? Cheating regularly on the gf diet also raises this risk.
What other illnesses will potentially be accelerated or developed because of non-compliance to the gf diet?
There are so many questions and not enough answers. Potentially dangerous for those who want to believe there is a cure, are in denial, and don’t understand the issues.
4. Showing off your lack of knowledge
So, you can have. . . (insert very gluteny item here)
So, you can’t have. . . (insert gluten free item here)
Sometimes it is frustrating that the gluten free “fad” diet is so popular and yet so many people still don’t understand why many people need to be on the diet and that the diet means: no wheat (of any kind including spelt, kamut and triticale), no rye, no barley and no oats. (Many on the gluten free diet choose to eat certified gf oats but others avoid all oats as well.) Anything with malt typically contains barley. This would be a hidden gluten because it isn’t obvious. Most malt in the United States is made from barley. Another frustration is that because barley isn’t a top ten allergen, manufacturers don’t have to list it in their ingredient list.
It’s better to ask, rather than assume. I have put lists of gluten free items that are safe for me and/or my kids and given to people who want to be helpful or kind.
Learn how to read labels. If you have a question about a brand or ingredient, please ask me. I don’t want to be a bother and I really, really appreciate any and all efforts that go in to helping me be able to participate in gatherings.
Oh, and IT’S NOT A FAD DIET! It is medically necessary for people with celiac, gluten intolerance and several other diseases. These other diseases and medical conditions include: auto-immune thyroid, Down’s Syndrome, ADHD, and crohn’s just to name a few.
Also, celiac and gluten intolerance are NOT unreal or made up conditions! Celiac IS a real disease. It isn’t trendy or a fad and NO, everyone isn’t suddenly being diagnosed with it! Celiac has been under-diagnosed for a long, long time! Doctors are finally being educated properly about celiac and doing the testing. (It’s not perfect, but it is getting better.) For a long time, doctors were being taught old information about celiac disease. Education about celiac and the research being done has helped this to improve and doctors are finally recognizing gluten intolerance as a real condition! Gluten intolerance is finally coming to be more recognized and they are getting close to having tests to better diagnose it.
5. I know and understand the gf diet, do you?!
I am living the diet. I research and I help educate people about the diet, celiac and gluten intolerance. I am very up to date on these issues. I had someone say “You would know better than me, but did you know you can still eat Kamut.” When I tried to correct her, she argued with me. Not only that, but she was giving misinformation out to other people in our area. It’s this kind of thing that makes it hard for us that are truly in need of being gluten free!
*Kamut is a man made grain that is derived from wheat. The following is encouraging (Encouraging because so many people have the wrong idea about it, but it is right there on their website) : http://www.kamut.com/en/health/nutrition
“Although the gluten in KAMUT® khorasan wheat is different than found in modern wheat, it is still present and therefore the grain is not suitable for those with celiac disease.”
*Spelt is also a man made grain derived from wheat. http://www.allergy-details.com/gluten-free-diet/spelt-safe-wheat-free-or-gluten-free-diet/
“Avoid if you are celiac! If you have celiac disease, you must avoid all spelt, just like any other form of wheat. Spelt is not safe for celiacs.” (Directly from their website.)
*Triticale: this article explains more about triticale and how it came to be and what it is used for. https://www.hort.purdue.edu/newcrop/afcm/triticale.html The short explanation is that it is derived from crossbreeding wheat and rye.
Not everything that is labeled gluten free is necessarily gluten free or safe for those that need to be gf! Cheerios is highly controversial. Most celiac and gluten intolerance organizations and groups recommend not eating them at this time and they are not considered safe for those who need to eat gluten free for medical reasons.
Some restaurants who offer gf menus or options don’t do gluten free properly. I am especially bugged by those who say they use a process that eliminates the gluten and makes it safe and gluten free. NO! NO! NO! There is no process that eliminates gluten! Sour dough bread made with gluten ingredients and therefore is not safe. Nor is hydrolyzed soy sauce! Don’t believe everything you read or hear and find good, reliable sources for information. (This post has more about products that use hydrolyzed forms of gluten: https://www.shannonsgrotto.com/hu-not-gluten-free-part-2/
Some of my favorites are the Gluten Free Watchdog, Gluten Intolerance Group, and The University of Chicago Celiac Disease Center.
Gluten Friendly and Gluten Neutral aren’t necessarily gluten free and safe for me to consume. (I wish people would quit using these terms!) The gluten protein is NOT neutral, nor is it friendly to someone with celiac!!! These terms make it sound like you are just jumping on the gf band wagon to make a buck.
6. Talk to Me, I have other interests
It’s not the only think I want to talk about and you don’t have to bring it up every time we get together!
Don’t get me wrong. We love that you ask questions. It’s great if you really want to learn more. There’s so much to it and once we start talking about it there’s no more time to talk about anything else. I worry that you are bored or that you are just being nice and aren’t really that interested. There’s more going on in my life than celiac and being gluten free. I’m still me. I have to think about it all the time and would love to have a break and talk and think about something else!
7. Don’t get offended
Yes! One bite will hurt me! No! I can’t just eat everything but the crust. One crumb is enough to cause a reaction! The unseen gluten protein that may be in your kitchen may also hurt me! I know that you don’t understand cross contact and I know that it can be as bad as actually eating gluten.
Celiac and gluten intolerance are serious. When we decline it is because we are protecting our health. Please don’t try and guilt us into eating something with gluten or something that may have cross contact of gluten in it. A reaction to gluten isn’t over in a couple of hours! It can last for 3- 5 days or longer. It can trigger a chain reaction in the body that goes on for a long time because of one exposure to gluten. Continued, regular exposure to gluten has long term ramifications that includes higher risks of other auto-immune diseases, other related diseases, and elevated risks of certain cancers. No one knows the extent of occasional exposure to gluten, other than the side effects that typically last 3-5 days.
If you have a gluten free friend or family member, please learn more about it. Food is a big part of our culture. Just because they can’t eat certain things doesn’t mean they don’t want to participate. Is there something your friend can bring, is there something you can have for them instead or do they have other suggestions? Communicating with those who are gf for events is really helpful in helping them to participate and feel comfortable.
Not everything gluten free tastes good! Some things your dog wouldn’t even eat. It’s not that we don’t appreciate your efforts, but I’ve had some really nasty tasting gf foods. Communication with your gluten free friends and family goes a long way! It can help avoid an uncomfortable situation for everyone involved.
Be willing to share the menu with your gf family and friends and talk about options. Ask about what brands are good if you want to get something.
Learn more about cross contact. This makes us just as sick as eating gluten. Cross contact is when you touch gluten and then touch something that is gluten free. Here are some other ways cross contact can occur:
Any porous baking dish or surface you cook on. (stoneware, waffle iron, non-stick pans)
Cutting with the same knife things that have gluten and then cutting gf products (If washed with soap and water before using on gf products you will be fine.)
Colanders: these are tricky and many have separate ones in their homes for gf and gluten noodles. (If they aren’t an all gluten free household.) The reason for this is that gluten can hide in those holes and cause a reaction from cross contact.
Crumbs on counters. Microscopic flour dust on your counters. It can take 3 hours for one puff of flour to settle.
Any jar that a knife is double dipped in: jam, mayo, peanut butter, butter, etc.
8. Don’t tease, try to tempt me or be condescending about my gluten free lifestyle
I know what you are eating is good. I know what I am missing. So, dangling it in front of me just makes it harder. Also, telling me it isn’t good doesn’t make me feel any better about not getting to participate.
It’s not funny to tell me you put extra gluten in my gluten free food. Or, yours has some extra gluten on the side. I’m already stressed about it and it’s not funny. (It’s surprising how many people have people say stuff like this to them! )
It bares repeating: Yes! One bite will hurt me! No! I can’t just eat everything but the crust! No! I can’t just take the bread off! No! I can’t just take the croutons off! No! I am not overreacting or being unreasonable! No! I am not trying to be nor do I want to be high maintenance!
This can also go the other way with people telling you how bad gluten free food is and how they would die if they had to eat gluten free!
If you have tried gf food that is bad then you are eating the wrong brands or foods because gf food can taste far better than gluten food. It also tends to have less preservatives and less unnecessary ingredients. Why are you judging all gf food by the one or two bad experiences you have had with gf food?! That would be like judging all vegetables by brussels sprouts! Yuck!!!
If you haven’t tried gf food and are telling me how bad it is, why is that? What is the deal with telling me how bad something is that I have to do, especially when you haven’t tried it?! Why when I tell you it’s not that bad, do you laugh and shake your head and not believe me? There are some incredibly good gf foods, brands and dishes! (One of my favorite memories is when my husband had his leftovers at work and his co-worker told him that it would be worth going gluten free to have lunches like he brings in.)
At my daughter’s wedding we had some gluten sugar cookies and some gluten free sugar cookies. Our cousin who can eat whatever he wants held his own taste test. The cookies were made by the same company. His conclusion was the gf cookies were better in every way than the regular cookies!
9. Trying to relate to me by having as bad or worse issues
Having a hard time eating out because you have gone vegan isn’t the same as having a doctor tell you, you have to go gluten free because you have a medical condition. I’m not trying to minimize people who fully believe that being a vegan is the best thing for their health. However, most likely you did a lot of research and searching and trial and error before making your decision. For many of us, going gluten free is something that was forced upon us by a medical condition without coming to the conclusion, on our own, that it was the best thing for us. We couldn’t do it slowly because it is all or nothing. (Meaning, if you aren’t in 100% then being gf does you little good.) Depending on how sick and damaged your intestines are has a bearing on how well and quickly you recover. This is frustrating when you are doing everything you are supposed to be doing and still aren’t feeling great. Many people take 6 months to 5 years before they really start feeling good. Sometimes there is more to eliminate, like dairy or other allergies or food sensitivities. Some, may never fully heal from the damage caused to their intestines and never feel really good. They must continue to be gluten free to avoid further health issues but not feeling good adds to the frustration of not being able to eat whatever you want.
Being 100% compliant is hard! Being 100% compliant is the only way to heal and feel better, there is no cheating.
Please don’t compare your (short term) illness with my auto-immune disease. I haven’t told you about the gas, the bloating, the constipation, the diarrhea, the hives, the migraines, the brain fog and all the things you haven’t seen. This wasn’t short term. This was many weeks off and on for many years if not most of my life.
My daughter has another auto-immune disease and it was so hard for her when people would ask her what was wrong and she would say she was tired. Almost always they would respond with they were tired to but they were still doing x, y, or z. Her tired is the kind you get when you can sleep and sleep and still don’t feel refreshed. The kind of tired you get when you are anemic and just feel exhausted. Many people don’t understand that auto-immune symptoms are often bigger and more complicated than what you have when you are tired or have a bug.
10. Cheating and Complaining
There’s nothing worse than someone who should know better but chooses to make other choices! When you eat gluten and then complain about that headache, are ornery, sick to your stomach or whatever other symptoms that just makes you feel off; it’s frustrating to hear you complain when you chose to eat something you shouldn’t have! Find your will power! You can do it! You are hurting yourself!
It helped me when I was first diagnosed to see everything that had gluten in it as poison. Gluten is poison to my body. It hurts me like a poison. When it feels hard I just remind myself that it is poison and I can’t do that to my health.
If you are diagnosed with any disease or condition, be your own advocate! Take charge of your own life! Research it! Understand it! Get involved in support groups and organizations that have to do with what you have! Find reliable, accurate sources.
Eat right! Follow your diet! When you tell people you have to eat gluten free and then eat gluten it hurts all of us!This is why people think it is a fake disease! This is why people think gluten free is a fad. This is why those who are gluten free aren’t taken seriously! This is why it is hard to get restaurants and manufacturers to have better practices in making gluten free foods and products!
Eat gluten free responsibly.