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The Ultimate Irony

The day I heard those four words, my life changed forever. No, they were not “will you marry me?”, yet I fondly remember that. They weren’t, “you're having a baby”, although that was the happiest moment of my life. The day I heard those four words, was the day that I realized life is full of ironies, and not in an Alanis Morissette kind of way. It was the day that a simple statement nearly put me into immediate carbohydrate withdrawal. Those four words were, “You have Celiac Disease.”

Seriously, I thought. “Are you absolutely certain?” I asked. Which I promptly followed with, “But how?”
Although I was reeling with outward shock to the physician, I was not really surprise by the outcome, based on the fact that I had asked for the blood test. No, I had practically begged for it- even exaggerating symptoms of severe gastrointestinal upset that should never be mentioned in a public place.

The doctor smiled and said, “Well you have tested positive for Celiac Disease, so you need to not eat gluten for the rest of your life.”
For the rest of my life. I thought. “Okay, so gluten is wheat, right?”
“Yes, and barley and rye. Here, let me print out some information for you on resources you can find on the Internet. There are some support groups and a list of what foods you should stay away from.”
For the rest of my life. “So this is not something I will just get over one day?”
“No. Once you have the disease, you will always have it.”

After leaving the doctor’s office, I sat in my car and began to make a list of all of the foods that I would no longer be allowed to eat. Ironically enough, this was two days before Thanksgiving and I was so not thankful that I would never be able to eat my Mom’s stuffing again. As the list of forbidden foods grew longer, I began to think back of the signs I had over the years- little things I may have miss that would have told me that maybe all of my favorite foods were literally poisoning me.

Stomach aches- Is it abnormal to go to bed several nights a week with a stomach ache? I’d had them for so many years that they became normal and expected.

Tooth Discoloration- Why is it that I had staining on my teeth as a child (thank goodness for modern day bleaching) that no dentist could find a reason for other than “they just appeared” or “maybe you hit yourself really hard in the mouth once.”

Canker Sores/Mouth Ulcers- More severe during times of stress, college finals and my husband’s deployment to Iraq, they would oftentimes become the size of a pencil eraser head. Ironically, they usually deterred me from eating gluten because they hurt worse when I did. I saw a pamphlet at the dentist’s office once that said mouth sores could be due to a wheat allergy. I shrugged and thought, That is definitely not me.

Recurrent Miscarriages- too painful to go into detail, but a potential link.

Anemia, chronic fatigue, weakened immune system- all symptoms that I suffered for years and mistook for something else. I had every excuse in the book for my problems,
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and chose to ignore what was obviously right in front of me.

Yet, I was beginning to think that maybe there was a link between my health ailments and Celiac Disease. Still attempting to forgo a lifelong abstinence from gluten, I scheduled a consult with a Gastroenterologist, knowing that if I was going to be passing on the pizza at my kids' soccer parties, there had better be a good reason for it. I should mention that I did give up gluten immediately after leaving the doctor’s office on that November day. For dinner that night, I ate yogurt.

The Gastroenterologist, who is one of the nicest doctors I have ever had the pleasure of working with, ordered an upper endoscopy, to biopsy my stomach and small intestine. He also told me that in order for the test to be accurate I would need to have consumed gluten for at least two weeks prior.
“So I get to eat gluten again?” Like I said, he was a great doctor, and he was telling me exactly what I wanted to hear.
For the next two weeks, I took my husband and children to every restaurant that I loved. I ate spaghetti, pizza, hamburgers, sweet and sour chicken, donuts, cake, cookies, sandwiches, consuming basically everything that was on the “forbidden” list of foods. It was glorious, and I will always remember my fourteen days of blissful gluten gluttony.

Of course I developed a respiratory infection, lost my voice for a week, and felt terrible the entire two weeks, but at least I was well fed. So- when the nice doctor told me that my biopsy did prove I had Celiac Disease, I did not argue with him, or cry, or storm out of the office in despair. I picked myself up out of the chair and realized that it was time to make a change.

Looking back at all of my years with undiagnosed Celiac Disease, I think of all of the ironies that were present in my life. There were the meals when my track coach said to carb-load before the big race and I would do just that. Chucking the impending stomach aches off as nerves, I could never understand why I felt so sluggish and sick on race day. There were the Monday mornings in college that I would come down with a cold after a weekend of fast food and pitchers of beer at the local off-campus bar with my friends. There were the afternoons when I could not keep my eyes open after eating a “healthy” whole wheat sandwich for lunch.

I also look back upon my jobs in high school and college- working in a fast food restaurant, serving donuts and slicing bread in a bakery, and as a waitress in an Italian restaurant. It is too ironic- yeah, I really do think.

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Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest. AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.). The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.

I'm sorry that life is so hard right now. Really. I can't imagine working 3 jobs and trying to manage this terrible illness. I think about American society and their obsession with food often. Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies. A loaf of gluten-free bread will last me 4-6 months in the freezer. I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty. I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated. Good luck!

Hi! Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too. Gall bladder problems are often associated with Celiac Disease. Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....

That's what I thought! My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that. He never had the biopsy either. I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all. My doctor didn't even offer the biopsy, and said the blood work was enough. Should I seek a third opinion? I mean, I've been gluten free for 9 months...

It will prolong your life....celiac is a autoimmune disease that causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances. One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS. I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums. Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/