Suffering from Celiac? Tips for Going Gluten-Free

By , SparkPeople Blogger
Editor's Note: According to the Celiac Disease Foundation, 1 in 133 Americans are affected by this ailment, which causes them to fall ill if they come in contact with even a trace amount of gluten, the protein found in wheat, barley, and rye. Abbie Roth, a freelance writer and academic editor, found out she had the disease in early 2009. She wrote a blog to help others who face a life with celiac or gluten intolerance.

By Abbie Roth

I’ve been living gluten free for more than two years now. Like many people, I was less than thrilled with my diagnosis. I remember crying over my beautiful dinner of grilled salmon and steamed rice because all I wanted was a piece of bread. Initially, I even rebelled against my diagnosis and binged on pizza, which I soon regretted. Once the reality sank in that I could actually feel good by eating the right foods, I never looked back.

What is gluten, anyway? First, let’s talk about what gluten is. Gluten is a protein found in some grains, particularly in wheat and its close relatives: barley, rye, and spelt. These grains and their derivatives are off limits to anyone on a gluten-free diet. Oats are usually contaminated because they are processed alongside gluten-full grains. Specially processed gluten-free oats are available, but some people still have gluten-like reactions to them. (I’m one of those lucky ones!)

There are a lot of misconceptions about gluten and the gluten-free diet. Whenever I meet a new group of people, I find myself educating them and debunking some of those ideas. But I do love to talk about food and nutrition and being gluten free. It’s a good thing, too, because whenever I go to a new restaurant I have to give “the spiel.” It goes a little something like this:

Me: “Hi! I have celiac disease and cannot consume gluten. Gluten is a protein found in wheat, barley, and rye. [etc]…Do you have a gluten-free menu, or can you make some menu suggestions for foods that would be safe for me to eat?”

Server: “Ummm… so you can’t have sugar, right?”

(This really happened. More than once. I ate lettuce at those places… or didn’t eat at all. Some things are not worth the risk

It's not a fad diet. Some people believe that “going gluten free” is a fad diet, like going low-carb. What those people don’t realize is that the gluten-free diet is a medically prescribed diet for the treatment of celiac disease and gluten intolerance. Celiac disease is an autoimmune disorder in which the consumption of gluten creates a reaction that causes damage to the small intestine and does not allow food to be properly absorbed. Other people believe that because celiac disease and gluten intolerance don’t result in full-body anaphylactic reactions that it isn’t serious. This couldn’t be further from the truth. Celiacs who continue to consume gluten, either by choice or by accident, are at risk for intestinal cancers, infertility, malnutrition, and a host of other ailments. Not as much is known about the disease processes involved with gluten intolerance, but anyone with it will tell you that the pain, discomfort, and other side effects that come with gluten consumption are just not worth it. Symptoms of celiac disease and gluten intolerance can vary, and the National Institutes of Health (NIH) estimates that 1 in 133 Americans is affected.

Feeding the belief that the gluten-free diet is a phase or a fad is the idea that following a gluten-free diet is inherently healthier than eating normally. Now, if your “normal” diet is fast food and cookies, and your gluten-free diet is whole foods, mainly fruits and vegetables, then yes, the gluten-free diet is healthier. But, just because a food is gluten free doesn’t mean that it is healthier than its gluten-full counterpart. Do you know how they get gluten-free cookies to taste good? They add copious amounts of sugar and fat. Gluten-free “sandwich” bread can have up to twice as many calories per slice as “regular” bread. Your gluten-free diet can be as healthful or as unhealthful as any gluten-full diet. Eating whole, unprocessed foods is important to good health regardless of your gluten status.

Think about all the food you CAN eat. In my gluten-free journey, I’ve come to appreciate the foods that are naturally gluten free, such as fish, meat, vegetables, quinoa, millet, rice, fruit, etc. Vegetables are naturally gluten free. If you were looking for a reason to eat more vegetables… there you go! Think about a trip to your local farmers' market. On the gluten-free diet, you'll have to pass up the baked goods, but that's about it. Right now I can get meat, eggs, cheese, lettuce, strawberries, radishes, asparagus, spinach, carrots, rhubarb, honey, maple syrup, and more. That doesn't sound like a diet of deprivation to me!

Surround yourself with support. If you think that you might have a gluten problem, I encourage you to talk to your doctor. I suffered for years because I stayed with a doctor who was satisfied with the diagnosis of “stress and IBS.” When I finally went looking for answers to my IBS, I found a doctor who listened and did the extra tests to confirm my gluten issues. And if someone in your life is gluten free, educate yourself! My friends and family that have made it a priority to learn about celiac disease and gluten intolerance have been a huge part of my support system. A good friend who has a gluten-free food area at her party so that you don't have to worry about cross-contamination is worth her weight in gold!

About the author:I am a writer and science editor. In my blog, A Gluten for Punishment, I share stories about living gluten-free in a gluten-full world. I have been gluten free since early 2009 when I was diagnosed with celiac disease. My diagnosis and return to good health was life-changing, and I hope to support and encourage others through my writing. Did these tips help you? Would you like to see more gluten-free resources on the dailySpark?

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I would like to see more articles like this ..thank you
here is a gr8 blogger about CD @ glutendude dot com/gluten-free-blog (he is also on facebook)
there are also some groups here on SP for more information which i already joined Report
Can we have more, or are there more recent blogs on the gluten free/celiac lifestyle for other Sparks people?
I can't find the Like button, but this was a great blog. I would like to see more Gluten-Free resources Report
I'm offended that you's say that low carb is a fad diet. I'm diabetic as well as allergic to wheat, corn and dairy. what's fad about being diabetic? Report
Thanks for your article! My son was diagnosed with celiac in the summer of 2009 at 20 months old. I must say that for us the change has not be as difficult as it seems to be for most people. My son was physically suffering before being diagnosed, so without a doubt we wanted to do everything possible to help him. Both of us got tested to be sure, but it was negative. We still decided to change our household to GF (other than beer) to avoid any cross-contamination. When not at home, my husband and I do occasionally eat gluten, but feel kind of icky afterwards and have to wash our hands and mouth as if we're dirty :) There are days when I feel sad that my son won't be able to just eat anything and that he'll always have to be cautious of what he eats, but knowing that he won't suffer makes it all better. We're very lucky to live in an area where our local grocery stores have a ton of gluten free foods available and my son doesn't not have to feel left out during birthday parties. He can even have a hamburger or hot dog on a tasty bun!!! With so many people suffering from gluten in one way or another, there definitely needs to be more awareness. Report
I don't have Celiac disease but I'm allergic to wheat, gluten & gliadin sorry this posted twice. Report
I don't have Celiac disease but I'm allergic to wheat, gluten & gliadin so I would definitely like to see more gluten free entries. When I add a recipe I always try to note it as gluten free. I'm also allergic to milk & eggs which makes it even more difficult to be "normal" as it were. But once I was diagnosed & started avoiding the allergens I felt so much better that I never want to go back - I have proven this by eating pizza one day & the next few days I felt miserable. You live & learn! Report
My daughter and myself are also gluten intolerant. I would love to see more on gluten free food. Thank you for your article. Report
I have unexplained anemia and the only consistent thing my hematologist has mentioned is celiac/gluten intolerance. I have been reading and firmly believe I am gluten intolerant. I do not believe I have true celiac but after being gluten free for a few weeks I can tell when I've eaten gluten. I see a GI doc next week. Report
SP needs more gluten-free items and such to educate people. I have a friend who is gluten intolerant, and we had a child in preschool who was. I'd never heard of it until learning what the little one could not eat. Report
Yes, I would really appreciate having more gluten-free resources available for use on Sparks. Including a gluten free diet! Sadly, when we sent a petition requesting this we were turned down. Perhaps in the future? Report
Yes, I would love to see more gluten-free resources on SparkPeople. I found that I am wheat intolerant about 6 years ago and follow a modified gluten-free diet. One must be vigilant in reading the labels of everything. There has been a massive improvement in the availability of gluten-free foods since then. One issue I would also like to see addressed is the cost of gluten-free foods. Most I have found are often 2-3 times costlier than comparative gluten containing foods.

As another reader said, many are treating a gluten-free diet as a fad and there must be education all around that it is not a fad. For some people, it could be a matter of life and death. Cross-contamination is another issue. Even salad bars, which individual ingredients are safe, can easily become cross-contaminated when someone carelessly uses the serving utensil from a gluten-containing food.

Thank you for the informative information. Report
Enjoyed reading this article and would like to see more on being gluten free.

1. I have the antigens to gluten, have been diagnosed with celiac since September 2009, and am NOT suffering because I am eating gluten free foods. However, I didn't think that I was "suffering" before being diagnosed either.
2. In my experiences with restaurants, it's best to talk to the manager rather than a server, makes for better communication. Once a server thought gluten was found in cheese, for example.
3. Yes, right, focus on ALL the wonderful foods that CAN be eaten: vegetables, fruits, potatoes, rice, meats, dairy! And, then, there would be chocolate and most ice creams which are in a category by themselves. And, Udi bread products which are gluten free. Report
My daughter's blood test for celiac came back negative, so we thought her symptoms must be triggered by something else. After talking with a friend who has several family members with a gluten intolerance, we decided to try an elimation diet anyway, and sure enough, her symptoms improved immediately, and seem to be gone after 2 weeks of no glutens. Now I am just trying to figure out what to feed a teenager who's favorite foods were breads and pasta and her favorite pastime is baking! She tried a quinoa pasta today and said it actually tasted better than white pasta or whole grain pastas, so I am hoping we can come up with more healthy alternatives like that. Any suggestions or further articles and information would be very helpful! Report
I would love to see more gluten-free resources on SparkPeople! Gluten intolerance is definitely a growing problem as more and more people get diagnosed. Thankfully I do not have celiac, but my stomach is veeeeeeeery sensitive to gluten and xanthan gum amid other things. And I'm a vegetarian, which just cuts down what I can eat even more! Report

I found out that I am Gluten Intolerant four months ago. I put myself on an elimination diet, and felt better within hours- for the first time in 15 years! It's challenging to eat out, especially as a vegetarian. Most gluten-free menus, (when available), consist almost entirely of meat, and a small side salad. I'm blessed to have a friend who has known about his Celiac for years, and has been an invalvuable resource. Any help from Spark would be appreciated! Report
Very informative, thank you. Report
Yes, I'd like more attention paid by SparkPeople to gluten free diets. I am gluten intolerant, and have been gluten free for almost a year. I've pretty much adjusted, but would like to see more information/recipes on this site. Report
Hi Thank you for writing this blog, I too have Ceilac's dis-ease, I have to be very careful with what I eat, I too wish Sparkpeople would address this as they do for diabetics. I too find it hard always having to educate people about Ceilac's they often ask will it kill you to eat "whatever" well no but it will hurt me quite a bit and I don't like when I accidentally eat something with gluten. I've had to be very careful with salad dressings, I've gone to oil & vinegar. Thanks again for enlightening folks on this important topic.
Many Blessings Always Debby Report
Now if only we could get sparkpeople to do a gluten free diet like they do a diabetic diet we would be all set. I can't use the meal plans because they usually contain gluten. Report
I have never had celiac, and what I hear of it, I'm so glad. This was a very informative blog, thanks so much. Report
My bro has celiac and we've found we have to stick with certain cuisines when we go out, but we live in a big city and there are quite a few GF restaurants. We've had some really wonderful servers help us and some not so wonderful. People don't get that you can't just "eat around" the croutons or pick them off. Contact = contamination.

Also, GF is certainly becoming a fad diet. That's not to detract from those who need to be on in, but there are plenty of people eating GF just because. It's annoying (and not very healthy) but if it raises awareness and means more GF options (GF Bisquick!) in mainstream markets, I guess we'll deal. Report
We're looking into the fact that my husband might be gluten intolerant as he's been having terrble pain in his feet and hands and we've read that this was a symptom. He's had both feet and hands x-rayed ad they can find nothing else wrong. So now we're just waiting for an appointment with our Dr again.

All the best to all sufferers and their loved ones, and thanks for the great article! Report
I didn't know Celiac disease was an autoimmune disease, either! I also didn't know that cross-contamination was a problem, but several examples from bloggers on here really made me think about it. I attend a women's retreat every summer, and we have one attendee who has Celiac disease, along with her two young daughters (who attend with her each year). They bring all their own food and are very careful about what they eat. They have always been open about discussing their disease. I'd love to read more about it. This article was very informative! I have a friend from college who suffers from IBS (for as long as I've known her - more than 25 years), and now I'm wondering if she is gluten-intolerant! Report
This was well written - I could easily follow it. It gave me so much insight to my grown-daughter's battle. One thing I had never realized was that foods could be cross-contaminated. That is a very vital bit of data that I had never heard before.

Thank you for taking the time to write the article. Report
I discovered I was gluten sensitive a year ago as are both my boys, our entire house is gluten free now and you just don't trust any fast food and cook everything yourself from scratch. I have had the attitude from people we are just following a fad and they just don't get the pain and illness from gluten is just not worth it. Report
I don't suffer from gluten issues, but as a former chef and avid foodie, I love to be well informed about these topics - thanks! Report
My husband is in the process of being diagnosed as a Coeliac. Unfortunately we cannot change his diet until the tests are complete. He is obviously (to my eyes anyway) scared and worried about the issues and we are both reading everything we can and trying to prepare as much in advance as possible.

All I really need to know is that he will be alright, am overcome with an overwhelming worry about him which I do my best to conceal so as not to worry him more than unavoidable. I am a type 2 diabetic and coming to terms with this new worry as well is proving a bit much. Any advice available from either side of the Atlantic would be most welcome. Report
I just don't eat alot of white bread and rice anymore because 1. I can have so little of it and it doesn't do the job complex carbs can to keep me satisified and 2. it doesn't have the same effect of having enough fiber to move my bowels like heavy ryebread.. If the bowels are not moving people burp and get bloated, I am terrible to be around when obstipated.. Sometimes we want a diagnose just on lazy habits, many people are too ashamed to admit their habits to their own doctor- I see this regulary being a resthome helper and sticking around to give a report to nurses for journal references when people are forgetful what the doctor says...
If I have allergies to food, my family is dialing 911 efter a ambulance- I am in trouble breathing and need hospital strength anti-flamatory meds..
I tried being vegetarian many years, mix soy, tomato, onion, garlic bang, GERD not food allergies..
I signed off the social scene in my 7th day adventist church (huge sector of vegetarian and vegans), because of lack of respect for how my stomach reacts and because people won't tell me what they are serving, wreckng occassions when I go CAVE from my food allergies and need a ambulance..
The look on people being so nasty trying to make me confirm is pure pay back.. But now I can't let this happen anymore, my food allergies increase with power and can kill me if not careful...
These tips don't help me at all, because my problem is souly social eating and the Surround yourself with support people going fickle when the novelty wears off.. People don't just hurt my feelings but I am in physical pain for hours trying to handle realities.. I am tired of repeating myself.. Efter 8 years it never gets easier! I say I am bringing my food to get-to-gethers and if it is a junkfood chain evening- I'll take a rain check thanks.. Report
I have IBS. I have noticed I can't eat whole grain wheat, rye or certain wheat cereals. When I eat cornmeal, I feel much better and have more energy. I really do like your blog on this topic. It is very informative & necessary as many people don't know what gluten is. Report
A low carb diet is not a fad diet. Research has shown that it is an effective way to lose weight. Report
Adult Daughter DX one year ago - I went GF1/1/11 Living gluten free in a gluten household is not easy but I feel so much better that it is worth it!! 1/2 of the kitchen is GF and the other half is Low key wheat - no baking gluten in the oven and no crumbs on 1/2 of the kitchen counters! We are learning daily and getting healthier all the time! Report
I was "diagnosed" with IBS when I was 18 years old and suffered from the symptoms for over 20 years. Never once did a doctor suggest it might be related to gluten intolerance. My dearly departed Sister-in-law constantly told me that IBS is a symptom of something and not a condition by itself. She convinced me to take an elimination diet test. Within 24 hours of being off gluten I felt better. After 30 days all my IBS symptoms and stomach bloating eased off. Now 4 years later I can tell within minutes if I've accidentally consumed wheat products and must tolerate the resulting discomfort for up to 2 weeks. And yes I've had waiters serve me a burger off the bun with a salad covered in croutons at the same time. Report
I would like to see more articles about gluten-free. I have gastroparesis, Lupus and am limited in lots of foods. Gluten causes inflammation in my joints and proteins & fibers are hard for me to digest. I am pretty much on pureed food or easily digestible food(melts in the mouth). So articles on staying gluten free and still getting fiber and protein I can eat becomes pretty limiting. Thank You! Report
I had no idea that this was an autoimmune disease! Report
Yes I would like to see more on gluten free/celiac/gluten intolerance Report
I would love love LOVE more resources for gluten-free eating on sparkpeople. I'm not celiac, but I do have a gluten intolerance and have to severely restrict the amount I eat. I've always struggled with staying off gluten because I find it difficult to keep a balanced diet without whole grains. Report
My daughter has all of your same problems. I try my best to be careful with cross contamination, but sometimes I make a mistake and feel so bad that I did. She is an adult and very smart about everything and will gently advise me on what to serve or not to serve. You have to read all lables on food and hope that they are accurate. Report
My son has recently been diagnosed with Celiac Disease and since he has been off of gluten, he is a new kid. His energy level and ability to focus on tasks has increased dramatically. He is also growing more and gaining weight. In the process of finding out, the entire family was tested and we found that my wife and daughter have a high gluten intolerance. What I find interesting and disturbing is that my wife has been suffering from IBS for years. Never once did a Doctor suggest a gluten intolerance. She has been on a gluten free diet for 7 months and is showing no signs of IBS anymore. I wonder how many other people are out there with suffering with IBS symptoms that could either have Celiac or a Gluten Intolerance. Report
I have Celiac. I've actually had people indicate they understood the problem, and then served me gluten anyway. more than once. No more eating at restaurants for me! Report
My dad has celiac and it's infuriating to me when we eat out. He'll usually order something like eggs and always explains he can't have toast because he has celiac and can't eat wheat rye oats or barley. They'll always bring him his eggs with toast and when he gets upset they just take the toast off the plate and think it's fine. When he says he still can't eat that they act like he's being unreasonable. It just makes me so mad. It makes me think even if it was just because he wanted to eat healthy why do they have to sabotage that? It's nice reading articles about eating gluten free when they actually understand that it's not just a fad diet people really do have to eat that way for a reason. Report
I think I am suffering from ceilac disease, but have yet to be dx. Thank you for sharing your blog with us. Yes, I would love to read more about ceilac disease and the diet as well. Report
As someone who also lives with Ceilac I appreciate seeing an honest and straightforward blog on this topic. Report