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What is the Difference? Celiac vs. Gluten Intolerance

This post aims to explain the difference between Celiac Disease and Gluten Intolerance. I'll explain my personal experience, what each one is, debunk myths, explain what happens to the body when ingesting gluten, and what created the negative stereotype surrounding "gluten-free"!


the difference between celiac disease and gluten intolerance

Disclaimer: I am not a health expert. I have been diagnosed Celiac for 17 years and in that time have gained general information as well as attended many educational Celiac awareness conferences and have worked closely with my doctor and nutritionist to better understand Celiac and its effects on the body. The following is my personal experience as well as some of the knowledge I have gained from those conferences. I do urge you to do your own research as well because Celiac Disease extends far greater than what information I can provide here.


Let me give you some background about me for starters, if you'd like to get to the grit of the article you can go ahead and skip forward.


I have been diagnosed with Celiac Disease for 17 years now at the time this was written, but I was born with it and undiagnosed for quite awhile. When I was in my toddler years it was thought that I was lactose intolerant and allergic to corn and legumes. There are stories of these epic tantrums that exceeded any normal toddler behavior, one that always pops up in stories is the time I kicked the bedroom door in so hard it jammed in its frame.


When I entered into middle school it was as if everything had magnified and all the years of eating gluten had suddenly fallen on me like a sack of bricks. Every day I felt stomach pains that doctors could not seem to find the reasoning behind. I would come home from school only to fall into a deep sleep for hours until woken up just to eat and then fall back to sleep just as quickly. I was out of school weeks at a time trying to recover from stomach pains and muscle aches. I saw doctor after doctor where they poked and prodded me until drives home were just filled with endless sobbing. I'd spend nights at the hospital where they would study me and have students come in to analyze all the details of my being sick, standing around me discussing me like I wasn't even there. It was humiliating and dehumanizing.


Things like "Gastroenteritis", "Crohn's", and "Bulimia" swirled around and around and one doctor went so far as to tell my parents that I needed to speak to a therapist because I was creating all of it in my head and living my own version of reality. I've had endoscopies and colonoscopies more than I can even count or remember and one test was as crazy as swallowing a hard boiled egg coated in barium and then taking pictures to watch how my body reacts to the food being digested.


I began to go into a deep hole of anxiety and depression and the thought of having to go to school and answer questions of where I'd been (since I looked completely healthy) terrorized me until my muscles had cramped so much I'd wake up with a stiff neck, unable to even lift myself out of bed.


Celiac was not even on the radar back then. I began vomiting almost everything I ate and the skin around my eyes began to turn a shade of purple, literal bruising from the pressure in my face and I went to dentists to make sure the enamel on my teeth weren't being damaged. My skin was pasty and sallow and pictures of me back then are unrecognizable, I could not even stand up straight.


We had teachers coming to the house so I could keep up with schoolwork and I was determined I was not going to fall behind. Years and years went like this until finally, one doctor thought it may be something called Celiac, which to me sounded like a death knell. We took a series of blood tests and they all came back positive. Within one week of going gluten free, my skin was a healthy glow, I was standing straight, I was eating, I was moving, I was laughing and everyone could see it. It was like a switch had been flicked and I was suddenly alive again. I took another allergen test and I wasn't allergic to dairy, corn, or legumes and now I can eat them freely.


There were moments that felt like what my life had been was going to be my life forever and there would never be a time that I wouldn't feel pain. And let's not forget my parents because through all of this they suffered with me. As a parent to a young child now, I cannot even imagine the fear, uncertainty, the decisions, the tears that were all shed behind doors for my sake. They bore the burden with me and through their support and determination we were finally granted answers. I graduated high school on time, moved to Hawaii for college, graduated, fell in love with my now husband, had my daughter, and have met opportunity after opportunity head on. Celiac is no joke and there are those that are still undiagnosed. Does this story relate with anyone?


 

the difference between celiac disease and gluten intolerance

So let's break it down:


Gluten: The protein found in wheat, rye, barley, and related products.


Celiac Disease, what is it? Celiac Disease is a genetic auto-immune disease. This means, simply, that when someone with Celiac ingests gluten and the gluten begins to break down in the body and digest, the body thinks of the gluten as something that needs to be fought off and creates antibodies to deal with it. The antibodies attack the small intestine, ultimately damaging it.


To go a little further, those who are undiagnosed Celiac and continue to eat gluten products, can over time become so sensitive to gluten, and really anything that is difficult to digest like dairy, corn, and beans, that the symptoms experienced can manifest itself in different ways which I will go into in just a bit. A Celiac specialist explained to me that it's like a door. When you eat a little gluten, that door opens just a little bit and you feel a little off. No biggie, it was a mistake and over time the door will "heal" and close. However, if you haven't given yourself time to heal and you eat more gluten, that door opens wider, and wider, and wider with each time. This door also allows other things in the body doesn't want, your immune system is compromised, and it becomes more difficult to close.


Symptoms:


This is probably my most asked question, what happens when you eat wheat? This is a loaded question and difficult to answer. Everyone experiences the symptoms differently and as stated previously, can over time manifest itself in new ways. This makes it increasingly difficult to know when a person is reacting to gluten or something else.

I like to break down the types of symptoms into 3 categories: Gastric, Dermatologic, and Mental.


woman holds her stomach as she feels pain from eating gluten

Gastric: This is anything to do with the stomach and intestines. As we've discussed, Celiac is an auto-immune disease that creates antibodies to attack the gluten when ingested, thereby damaging the small intestine. You're going to feel pain when this happens. When I used to go to Celiac conferences back in the day, there was a girl I would always see there who experienced "Leaky Gut Syndrome". She had been undiagnosed Celiac for a long time and from all of the gluten and damage she had a serious, border severe, amount of gastric ulcers, multiple organ failure, IBS, and psoriasis covered both arms. All because her gut health had been imbalanced for years.


All disease begins in the gut

-Hippocrates


From personal experience, when I've eaten gluten it feels like someone has taken a dull paring knife and stabbed me in the side with it and then has decided to twist it around. Sometimes this sends me literally doubled over in pain. If you'd like to read more about the symptoms I've experienced, please read my personal journey to finding out I was Celiac (just above)!


dermatologist examines skin after a person eats gluten

Dermatologic:


There are some people who experience symptoms through their skin such as rashes, psoriasis, itchiness, acne, etc. This is why many beauty products now have to be labeled gluten free as some people who absorb it through their skin react just as badly. Even those who mostly experience gastric affects, will still experience it on their skin now and again.


If I have been contaminated with gluten, I will usually see a break out of acne on my face or I will get scaly, itchy elbows and my hairline will become irritated. I also used to use this one shampoo regularly until I realized it had wheat protein in it which was causing massive migraines.


It wasn't until later in life when I was pregnant with my daughter that suddenly I had an outbreak of psoriasis on both of my knees that took 5 years to get under control. This was explained to me that since my hormones were raging I was suddenly out of balance again and by being prone to psoriasis through Celiac, it was a quick hop to infected knees.


woman feels mental and physical fatigue after eating gluten

Mental:


Mental symptoms include fatigue, anxiety, depression. In many adolescents and even adults it can cause mood swings and irritability.


My husband can tell I've somehow gotten ahold of gluten when I'll turn on a moment's notice into, for lack of a better word, a bitch. My temper is short, I have no patience, and everything is so, so annoying that I can't even stand to be around myself.



 

What is Gluten Intolerance? So this is tricky. Gluten intolerance is when someone describes their symptoms after eating gluten or wheat products as "brain fog", fatigue, bloating, and headache. These are also symptoms of Celiac, however someone with a Gluten Intolerance does not test positive for Celiac. This is also true of a wheat allergy. Allergies are something that our body fights off in the way of antihistamines, so think itchy throat, watery eyes, maybe diarrhea, headache is still thrown in there, throat closure, face becomes swollen or puffy, etc. Again, this person does not test positive for Celiac but they have an adverse reaction to wheat.


Even more confusing, gluten can actually be removed from wheat. People who are gluten intolerant could still potentially eat wheat products that have had the gluten removed. A Celiac person can not have gluten OR the wheat.


Someone who is gluten intolerant or have a wheat allergy may be okay in consuming barley, rye, and other products (depending on how sensitive they are) but a Celiac person cannot.



 

customers ordering gluten free from a restaurant

So where did the negative stigma come from? Now this is only my opinion: A little over 10 years ago, and I remember this, a newspaper came out at the beginning of the new year with an article stating what was "in" and what was "out". On the list in the column of "in" was "Being Gluten Free". I remember all my friends showing me how cool it was, Look! they said, Being gluten free is now being recognized! The term was suddenly known whereas before people would look at me like I had two heads when I said I couldn't eat something because of gluten. I actually remember thinking to myself, this is awful. Every one and their mother is going to say they're gluten free because they think it's suddenly cool.


What happened? Apparently once celebrities were making it popular, everyone followed suit. I worked in a restaurant at the time and people were coming in asking what was gluten free on the menu, and in my opinion, being complete snobs about it. They were surprised when I told them I had Celiac (what is that? they asked) and I would tell them in detail what they could eat on the menu. If something they wanted turned out to have gluten in it, ALL of them would say, oh well I'm going to have it anyways, I'm just trying to lose weight but a little won't hurt. All of them.


Cross contamination was no biggie to them. The fries sharing the same oil as the calamari didn't matter because they wanted the fries. To someone who is Celiac, that is death. Somehow they thought eating gluten free was helping to shed pounds? Which, I'm sorry, but it doesn't. Suddenly servers were rolling their eyes at these people claiming they were gluten free and not taking them seriously. Kitchens were not taking it seriously and cross contamination was and still is a serious problem. Kitchens didn't realize by lightly dusting something in flour you've now given it gluten. A salad still has gluten on it even if you just remove the croutons. It is now suggested that most people with Celiac can tolerate up to 20 ppm (parts per million) of gluten, but that is still a very teeny tiny amount. Again, everyone has different levels of sensitivity and the amount of damage in your small intestine will determine that.


So now what has happened? I have to fight to be heard when dining out. I have now settled on the reality that cross contamination at a restaurant is highly probable. Do I still tell my server? Yes. Do they always get it right? No. But I am also not one to send something back (unless it's completely covered in gluten) and berate the server. I remove the croutons myself and I eat. I understand that eating out is a risk and if I am going to take it then I am fully aware I could be contaminated and feel sick the next day.


On the flip side, now that there is more awareness about gluten and Celiac, there are so many amazing products to choose from now. I mean what a difference! When I tested positive for Celiac the only reason I did lose weight was because there was nothing to eat. That and every now and then my mom would forget I couldn't eat pasta anymore, haha!


EVERYTHING had gluten in it and back then food manufacturers did not have to list the big allergens, like nuts, dairy, soy, etc. My mom and I had to walk around a grocery store with a binder 5 inches thick with all of the companies names in it, their phone numbers, and items that they were pretty sure were gluten free. It was then up to us to call the number in the book and ask customer service if in fact the item was gluten free. We would spend hours in the grocery store. I had to carry these cards around explaining what gluten was and what ingredients may be "hiding" gluten. You can't even imagine the amount of times servers would hand it back to my mom and say "I don't think there is anything you can eat here". Sometimes I would just get a plate of steamed broccoli and boiled chicken. Sometimes people would mistake "I can't eat wheat" to "I can't eat meat" and give me these weird combinations of vegetables thinking I was vegan.


There are so many GOOD gluten free products out there now and I will be making a list of the best in a later post, according to me at least (and I've tried many).


 

there are many different grains that are gluten free

Myths:


1. Gluten is in all grains.


Gluten does not mean all grains. Gluten is not found in rice, buckwheat, millet, quinoa, amaranth, teff, sorghum, oats, or corn. To complicate things, it is found in spelt and semolina (which is purified durum wheat) so always read labels if you are unsure (and thank you world for Google).


2. Whey means wheat.


Whey is not gluten, even though it sounds like wheat. But you may want to watch out for your dairy-free and vegan friends, as whey is a by-product of cheese production.


3. Gluten free makes you lose weight.


Oh my god, this is my favorite to say a big NO to. Guess what my friends, going gluten free does NOT make you lose weight and can actually make you gain weight. So stop it. This is for 2 reasons: Many Celiacs have a hard time absorbing nutrients, Calcium is a big one and why Celiac disease can lead to Osteoporosis. Many "healthy" gluten free products have more added supplements. The second reason, in order to mimic regular wheat flour, many different flours and starches are combined. This gives a heavier, more dense flour and many times more calories. This also changes the flavor and more sugar or flavor enhancers are needed. Higher sugar content and calories equals weight gain.

Now, I will say if you are not eating manufactured gluten free products, sticking to healthy proteins, vegetables, fruit, portioning your grains and making them diverse then I would bet you're gong to lose weight.


4. If you eat a little gluten sometimes, it'll be okay, it may even help.


This is a big and resounding NO. I used to go to this church where this husband, who was a baker, was baking gluten free bread for his Celiac wife BUT he was putting in a little bit of regular flour in hopes that she would get used to the gluten thereby just "getting over it". She was consistently sick, was diagnosed with Osteoporosis, became frail, and the last I had heard, she had fallen and broke her hip, wrist, and a leg.


We cannot just "take one bite". Gluten is poison. And again, it is like that door mentioned earlier. When you open it a little bit, other things get in. If you don't give it time to close and keep letting gluten in, more and more damage ensues and more things get in like Osteoporosis, Alzheimer's, Schizophrenia, Bipolar Disorder, the list goes on.


Celiacs do not "get over it". It is an auto-immune disease with, currently, no cure or medicine to help us digest gluten. We will have it for the rest of our lives. And we will pass it on as Celiac is genetic.


5. Oats have gluten.


So this is a hot topic of conversation. You see the oats in the aisles that say "Certified Gluten Free", so what does that mean if they already do not have gluten? This comes down to cross contamination. When a farmer is growing oats, they are usually growing barley, rye, and wheat as well. During the farming process and all subsequent processes through production, those oats have been contaminated with gluten. That's where those "Certified Gluten Free" oats comes from. Now there are Celiacs out there who also are intolerant to oats regardless so for someone who just found out they have Celiac it is wise to tread carefully through the oatmeal or only stick with the certified stuff.


6. "Manufactured in a facility that also produces wheat" means it contains wheat.


No. So this is actually the manufacturer saying to you, "we see you, you Celiac you". They are being considerate and telling you that this product is gluten free, however their facility is not dedicated gluten free. In order to say a product is "gluten free", there are guidelines and regulations they have had to follow to get that label, meaning there is not gluten in it. So you are safe. For a product to be considered gluten free, the FDA set a limit of less than 20 ppm which is the lowest level that can be consistently detected in foods and we have already mentioned that researchers have found that this is the level most Celiacs will not react to. Now, if you are incredibly sensitive then maybe you need a dedicated facility. But that's between you and your body.



 

If you've made it this far, then I thank you. Celiac is a big deal and while I always say "If I had to have a disease I'd choose this one", it's still a pain in the ass. I would love to have the freedom to order whatever I want at a restaurant. It's annoying having to wrack my brain trying to think of how I was contaminated or sometimes feel like I have no control over how my body is reacting. Or awkwardly refuse the cookies someone brought me from home just for me. Sometimes I forget what the pain feels like so I feel like maybe I can just have one bite... and then instantly regret it. But Celiacs have to keep in mind the long-term affects, always. It's not worth it in the end.


What would you add to this list? Do you have any questions or comments?

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