I am writing this today because it has been awhile since I ranted or have been ‘glutened’. Now I have been glutened twice in the past month and I am ready to spew.
One of the biggest problems we are facing as a community is dealing with the masses thinking that gluten free is a fad; for people like me with Celiac disease or others with serious gluten intolerance, I can assure you that it is not. I have said it before and I will say it again, Celiac Disease is real! Safe Gluten Free food is the only cure for this autoimmune disease that is NOT an allergy.
When people with Celiac disease eat gluten, their immune system receives mixed messages and instead of attacking the gluten invader, it attacks the human body… ANY PART of the human body. The attack is not just limited to the intestinal tract, it can attack the brain, organs, cells, muscles, etc; which is one of the reasons there are so many symptoms.
With some people, like myself, the effects of gluten hit me right away. The first symptom to happen within the first few minutes from cross contamination is a bloating stomach and I look 3 months pregnant, (picture here).
This is caused by using the same spatula to flip gluten pancakes and then using the same unwashed utensil to flip my GF pancakes; Yes, it only takes a teensy amount of a few crumbs to get me sick. Or preparing my GF food in the same area as gluten food, or taking the croutons off my salad in the kitchen and then handing it back to me thinking I wouldn’t notice because you weren’t taking me seriously when I asked for it in the first place.
Some of the annoying gluten-freeisms I have been asked or told:
just one noodle won’t hurt
yes it will.
oh there is just a little flour in the gravy, not a big deal.
yes, for me it is!
the food is made in a wheat facility but is naturally gluten free (like corn) so it should be fine.
no, actually it is not fine.
the crumbs from the wheat buns have burned off on the grill so it shouldn’t be an issue.
and you know this because…? Because you are wrong.
Touching wheat flour and then making my food will affect me. With the advent of so many people jumping on the fad wagon of glutenfree, the seriousness of CD, gluten exposure and cross contamination has been dummied down to serve the masses and the people who sell to them.
My issue is with the companies profiting irresponsibly off questionable gluten free food that I cannot eat, restaurants enticing new customers with gluten free food they have no idea how to prepare and the ‘fadwagoners’ joining the crowd because they believe it is healthier or can lose weight. These entities have instilled this fad idea into the general public’s mind taking ‘gluten free’ away from the people who truly need it, me!
You know why you initially lose weight on a gluten free diet? Because you have stopped eating all the bread, pastries and other processed food on a daily basis that you normally eat. There is no miracle cure here if you do not NEED to eat gluten free; you have just stopped eating most of the garbage you are used to because of it.
For all those non-believers out there, Celiac Disease and Gluten Sensitivity are NOT A FAD, they are real and have real harmful effects on MY body. So please stop minimizing it or rolling your eyes when I order or assure me there is no gluten in something when there is because you think a little won’t hurt or are to lazy to go and find out.
And for gosh sake, PLEASE STOP ADDING THE LITTLE ‘GF’ TO YOUR MENU IF YOU DO NOT KNOW ALL THAT ENCOMPASSES PREPARING THAT TYPE OF FOOD; because next time I get glutened from your establishment, myself and at least 10 of my closest friends will be standing outside the front door with big signs saying your food poisoned me.
This might seem a little passionately crazy, but I am ok with that if it gets the point across. This is not a choice for me and you are poisoning my body. I need to eat gluten free to live disease free. If there was even a spec of peanut in someone’s food with a peanut allergy they would go into anaphylactic shock; my shock is inside me, damaging my body silently and taking years off my life. Not to mention the 300 other auto immune and diseases continued gluten damage can cause the body.
This article in the Huffington Post is a great example of the media putting stuff out there and not adding all the pertinent info needed. The name of the article is, A Guide to Gluten Free Etiquette and the strange thing is, this article doesn’t mention Celiac disease at all, but instead mentions Intolerance & Wheat Allergy, which is VERY RARE. It’s NOT an allergy Huffington Post, it’s an AUTOIMMUNE DISEASE!
If you are one of those people out there bashing the fad, WHY is it so difficult for you to add this very easy disclaimer, ‘except those with Celiac disease, whose only option is a gluten free lifestyle and surely NOT a fad for them’. Celiac disease and eating is a challenge everyday; do you really need to make it harder on the 3 million of us who are just trying to take OUR gluten-free food back from the people you are bashing?
You are halfway there anyway just talking about it; educate yourselves and throw us some much needed support; but feel free to keep making fun of the people who are ruining it for us.
I recently went to a restaurant that offered gluten free; I talked to the waiter, the manager and all assured me the food would be looked after. Halfway through the meal my stomach started to grumble and bloat, I looked at my husband and then gave it a few minutes to see what was going on. Maybe indigestion, etc… Nope, 15 minutes later I was crapping it out in their bathroom, practically in tears at the sheer embarrassment of the sounds emanating from the stall. The manager sincerely apologized and assured me they took all the necessary steps. Turned out one of their sauces previous to the newest chef hired, had added wheat flour in it for thickening and he was not aware because he had stopped that practice. The sous chef that had made the batch was not aware they were not doing that anymore so had added it. Total miscommunication and it really was no one’s fault, but it not only sucked for me but ruined the whole night. The manager invited us back with a full comp for dinner if we would give them another chance. This is a mistake I hope they learned from and will not make again.
I recently went to a restaurant that offered gluten free; I talked to the waiter, the manager and all assured me the food would be looked after. Halfway through the meal my stomach started to grumble and bloat, I looked at my husband and then gave it a few minutes to see what was going on. Maybe indigestion, etc… Nope, 15 minutes later I was crapping it out in their bathroom, practically in tears at the sheer embarrassment of the sounds emanating from the stall. The manager sincerely apologized and assured me they took all the necessary steps. Turned out one of their sauces previous to the newest chef hired, had added wheat flour in it for thickening and he was not aware because he had stopped that practice. The sous chef that had made the batch was not aware they were not doing that anymore so had added it. Total miscommunication and it really was no one’s fault, but it not only sucked for me but ruined the whole night. The manager invited us back with a full comp for dinner if we would give them another chance. This is a mistake I hope they learned from and will not make again.
Well done! It’s getting crazy out there? We should teach the difference between a fad and reality. Frustrated by these things& #educating on these things can be done 🙂 together
Well done! It’s getting crazy out there? We should teach the difference between a fad and reality. Frustrated by these things& #educating on these things can be done 🙂 together
Not a fad.
Not a fad.
I wouldn’t have been able to keep my mouth shut for the life of me. Would’ve tried a little chat and gave him the biz card.
I wouldn’t have been able to keep my mouth shut for the life of me. Would’ve tried a little chat and gave him the biz card.
Restaurant servers are constantly getting people asking for gluten free and when the warm bread comes out they are the first asking for more bread. This makes servers not take those of us with celiac seriously.
Restaurant servers are constantly getting people asking for gluten free and when the warm bread comes out they are the first asking for more bread. This makes servers not take those of us with celiac seriously.
Great article! I only frequent the restaurants that have proven that they fully understand and have trained their staff well.
You Go Kirsten!!!
You Go Kirsten!!!
a Celiac can’t let their guard down – I have experienced varying levels of diligence in different places.
a Celiac can’t let their guard down – I have experienced varying levels of diligence in different places.
I am starting to wonder if anyone will ever get it! Cross contaminated at too many places.
I am starting to wonder if anyone will ever get it! Cross contaminated at too many places.
I feel for you and all the others who have what I call “traditional” Celiac disease. I actually consider myself lucky that I am DH Celiac, since I don’t get the abdominal pain at all. The symptoms for me are skin blisters and breakouts. But, the same intestinal damage is happening to me internally. I just don’t always know that I’ve been “glutened” until a day or two after ingesting something inadvertently.
Somehow, when I tell someone who is uniformed about Celiac disease that I break out in blisters on my knees, elbows and face after eating something with gluten in it, they seem more sympathetic than if I said it gave me stomach pain. Which of course is ridiculous and ignorant of what 1000s of CD individuals go through. I usually tell them that the “traditional” sufferers have it worse off than I do.
I have however, started noticing I have been more bloated lately…not pretty. Between the skin issues and bloating, I understand not wanting to leave the house…
it’s scary how many ‘silent symptoms’ you can feel, but not be able to get across to other people. The blisters must be awful… is it painful?
I feel for you and all the others who have what I call “traditional” Celiac disease. I actually consider myself lucky that I am DH Celiac, since I don’t get the abdominal pain at all. The symptoms for me are skin blisters and breakouts. But, the same intestinal damage is happening to me internally. I just don’t always know that I’ve been “glutened” until a day or two after ingesting something inadvertently.
Somehow, when I tell someone who is uniformed about Celiac disease that I break out in blisters on my knees, elbows and face after eating something with gluten in it, they seem more sympathetic than if I said it gave me stomach pain. Which of course is ridiculous and ignorant of what 1000s of CD individuals go through. I usually tell them that the “traditional” sufferers have it worse off than I do.
I have however, started noticing I have been more bloated lately…not pretty. Between the skin issues and bloating, I understand not wanting to leave the house…
it’s scary how many ‘silent symptoms’ you can feel, but not be able to get across to other people. The blisters must be awful… is it painful?
Thank you for your post! My rant is that I’m sick and tired of people saying that if you don’t have celiac disease, its actually bad for you to eat gluten free!! After reading some “web MD ” articles, I can see why they think that way. Why do they pick on the GF people? What about the vegan or vegetarian? Do they say its bad to be vegan even if you don’t medically have to be?
Check this out from the Web MD website:
Why is it important to accurately diagnose celiac disease?
Diagnosis of celiac disease should be firmly established before starting a person on a gluten-free diet. Here’s why:
1. The gluten-free diet requires avoiding wheat, barley, and rye — products that are dietary staples, at least in the U.S.
2. Patients with irritable bowel syndrome (IBS) may experience improvements in bloating, abdominal pain, and diarrhea with a gluten-free diet. These patients may be misdiagnosed as having celiac disease. Without confirmation of celiac disease by small intestinal biopsy, they may be unnecessarily committed to lifelong gluten restriction.
3. A gluten-free diet can lower blood antibody levels and allow the microscopic appearance of the small intestine to lose the typical appearance of celiac disease, complicating subsequent efforts at making a firm diagnosis of celiac disease.
Local ABC tv in Chicago recently stated “Scientists say that if you do not have celiac disease or wheat allergy, there is no reason not go gluten-free.” I wish I could educate those ignorant, brainwashed, addicted scientists. I not only have celiac disease, but also gluten ataxia, and other autoimmune conditions that make it too risky to eat I restaurants. Neurologist Dr. Marios Hadjivassiliou discovered gluten ataxia. He says not only do the vast majority of celiacs have the symptoms of gluten ataxia, but most of the sufferers of this disease do not even have the HLA-DQ genes for celiac. They have other DQ genes for gluten ataxia. Not only that, but most with gluten ataxia wind up in a wheelchair before they are diagnosed. He says that gluten affects you neurologically by the time you are in your fifties. However, I have read an article about a 27 year old woman with gluten ataxia who is in a wheelchair, and got an email about a 2 year old boy with gluten ataxia. I had the price ledge of having dinner with Dr. Rodney Ford, who stated that celiac is primarily a neurological disease. This was nearly two years ago when he was on his book tour “Gluten Zero Global”. My doctor who diagnosed me agrees with Dr. Ford that everyone in the U.S. needs to be gluten-free now. Wheat germ aglutenin is a danger for everyone. Be careful out there Kirsten!
Thank you for that Michael, I also have gluten ataxia as well as celiac and let me tell you it is not fun. People don’t equate things that are happening in the brain with food, hell, doctors don’t want to equate things going wrong in the body with food. I have been chatting with a doctor colleague of mine lately who has been sharing horror stories of other doctors and their behaviors towards patients. The laughing behind the patients back because they believe it is all in their heads or the passing off of patients they deem ‘hard to deal with’ because they cannot figure out what is wrong and prescribe a pill to temporarily band-aid it. The bad thing about the uprise in GF food is the safety fear that goes along with it. Companies being allowed to add gluten to food as long as it is under the 20ppm and like you said, there are only certain gluten proteins that have are being tested and we know virtually nothing about the rest of wheat proteins that may affect people.
It’s getting crazy out there? We should teach the difference between a fad and reality.
It’s getting crazy out there? We should teach the difference between a fad and reality.