Being Celiac

natalie 206x300 Being CeliacI have Celiac Sprue so I have been truly gluten-free for over a decade now. The following article chronicles the TWO years it took me to figure out that I had celiac disease.

 

Being Celiac – Looking back over those two years I think I appeared a healthy, fit and energetic person. I am known among my friends and family for my dedicated fitness routine and healthy eating. However, I was struggling in the worst way. What no one knew at that time, including me, was that my immune system was attacking holdthegluten Being Celiacmy own body. I was seriously ill and getting worse every day.

My illness started with the types of symptoms that you try to ignore. In the beginning, all of my symptoms seemed pretty typical and they were easy to mask. I experienced excessive tiredness in the afternoons, extreme hunger all of the time, but “bloated” every time I ate and experienced intense stomach cramping after every meal. All of these seemed like common problems that others faced. I mean, aren’t all of us tired after lunch and hungry at times? As we get older, don’t we think that we have a potbelly?

I quietly tried to self-diagnose and self-medicate. I was drinking a bottle of Mylanta a day to deal with the cramping, swallowing Beano before meals to try to deter the bloating, and I drank caffeine every afternoon to stay awake. I had been eating a lot of antioxidant rich foods, so I thought; maybe I have been eating too many vegetables, too much fiber. I rationalized that white flour products were supposed to be good for stomach aches, so reduced my veggies and fruit, adding more pasta, bread and other starches to my diet. Things only got worse.

wheat pic Being CeliacIn addition to the other symptoms, I eventually started to get a strange pain in my chest after every meal. I had read several articles about fatigue and heart disease. Being that my dad died very young of a sudden heart attack, I started worrying that maybe it was my heart. I went to my Internist; I went to the emergency room, even made an appointment with a cardiologist. After all of these visits, they told me that I was experiencing was normal and they all made me feel like a hypochondriac. I did begin to feel like a complainer and hypochondriac. I think I even began to feel mildly depressed.

By this time, my lower abdominal pain intensified and I thought maybe my OB/GYN could help me. She saw me and told me I may have polycystic ovaries and gave me birth control pills to help the pain. I thought I had my solution.

As the weeks and months went by, my condition continued to worsen. My lymph nodes started to act up and I would get pea-sized lumps in my neck, my groin, and my underarms. Did I have cancer? What was wrong with me? I was getting scared and knew something was really wrong. As a person who has been dedicated to my personal health and fitness, I knew that this was no time to give up. I knew I had to take control of the situation!

I went back to the internist and almost embarrassed, I made him listen to all of my symptoms again. He still did not have a clue what my problem was, but because I mentioned that the chest pain would happen normally after eating, he did recommend that I go to a gastroenterologist.wheat food pic 2 Being Celiac

After spending 10 minutes with the GI doctor, I was told it was heart burn. He wasn’t interested any of the symptoms other then the chest pain and he prescribed a drug as the solution. When that didn’t work, he gave me another drug. My stomach and chest pain continued to get worse, not better. I began loosing interest in eating because eating to me was associated with pain. After several weeks, I stopped taking the medicine.

I went back to the doctor and who now told me it was stress. Relax, I was told. Well, maybe it was. Maybe I was making myself sick. I took Yoga, I meditated and I was committed to relaxing, but still no change.

The doctor wanted to prescribe anti-depressants to alleviate the stress and depression, but that solution didn’t feel right to me, so I turned it down. The doctor then suggested I might have an ulcer.

I had an endoscope examination and a stomach biopsy. When I woke up from the procedure I was told that there was no ulcer. I was diagnosed with IBS as well as “low pain tolerance”. This would explain why my chest hurt? That still didn’t sound right to me but I tried to accept that diagnoses and left.

Certified gluten free Being CeliacI had been diagnosed with so many possibilities in the last two years that I decided I was done going to the doctor. Nothing was really wrong with me. It must all be in my head.

Two weeks after the endoscopy and biopsy I received a phone call from a nurse. The biopsy from the endoscopy showed signs of Celiac Sprue. I had never heard of it. I looked it up on the internet that night. I could not believe what I read! I was a TEXT BOOK case for this! Every one of my symptoms was listed right there on the internet.

One the hallmarks of this disease is that it is a commonly misdiagnosed disease. What surprised me even more is that not one doctor I had been to had even suggested this as a possibility! I was accidentally diagnosed with Celiac Sprue. They weren’t even looking for it.

I had been diagnosed with everything from chronic fatigue syndrome, to polycystic ovaries, IBS, stress, ulcers, depression, EVERYTHING but Celiac Sprue in the two years.

To make matters even more ridiculous, Celiac Sprue is an auto-immune disease. The tendency for auto-immune diseases is genetic. Since many family members also suffer from other autoimmune diseases, I wondered how did all of these doctors miss this? It is because Celiac Sprue is still not widely known or understood.

What is Celiac Sprue? Basically, a person who has Celiac Sprue has a body that does not recognize gluten and does not digest it. Every time a person with Celiac Sprue eats something with gluten in it, their immune system attacks their digestive track and creates all of the symptoms that I was experiencing.

What do you do to treat Celiac Sprue? The doctor’s advice sounded easy at first, “Just look for things without gluten as an ingredient”. Turns out that it was a lot harder then I had thought. Gluten is by product of wheat, rye and barley. I had no idea how many things have those ingredients. Obviously bread, pasta, crackers wheat2 Being Celiacare off the menu, but gluten is in just about every processed food. Candy, preservatives, marinades, packaged foods and even soy sauce!

I thought that I ate healthy before but what I eat now is extremely healthy. Healthy has taken on a whole new meaning. I miss the foods I used to eat, but after just a few days of being gluten-free, every single symptom went away. I had forgotten how good feeling “normal” could be!

One surprising fact I discovered is that it is estimated that approximately one out of every 200 people in the US may have undiagnosed Celiac Sprue! This is a grossly under-diagnosed disease and such an easy one to treat!

I am not upset that I have this diagnosis. Actually, it is quite the opposite! Not only do I feel great everyday now, but I eat healthy without any temptation. I don’t want to feel badly, so eating bad is never an option. Also, many restaurants are very accommodating.

glutenfree Being CeliacWhole foods market list many foods as “Gluten Free” so I do not need to scour ingredients when I shop there. They even sell gluten-free pizza and cake mixes! PF Changs, Outback Steakhouse and many other restaurants even have full gluten-free menus.

I want to educate others on this commonly misdiagnosed disease. If you have any combination of the symptoms I had, talk to you doctor to find out if you should be tested. A blood test determines the gene and a biopsy determines the extent of the damage. Untreated Celiac Sprue can be very serious and life threatening. Left untreated, it can lead to lymphoma and other cancers. Treating Celiac Sprue may alleviate all of the symptoms and can greatly lower your risk of digestive track cancers.

– Natalie Jill

I share a FREE guide to going gluten free HERE

As a licensed sports nutritionist , a celiac and a mother of a daughter with nut allergies, I am very versed on allergens and intolerance as well as  treating type II diabetes and autoimmune diseases through diet. Please look HERE for more information

 

Comments

Wonderful Comments!

Comments

  1. says

    Hi Natalie! I too am a Celiac and I am training for my first Bikini Comp! I am very excited and have a nutrition plan tailored to be GF, but I was just wondering if you have any big tips as to foods to “for sure” eat or “for sure” stay away from while prepping? I want to do well as a fitness model, but I also want to stay healthy and get all the proper nutrients my body needs!

  2. Brandi says

    Thanks for sharing your story Natalie! You have made me realize that all my symptoms can very well be gluten intolerance or just sensitivity! I’ve been to so many doctors just to hear diagnosis that I don’t agree with! But I’ve been gluten free for a month and I already feel 100 times better and I also have lost all the bloating! I just received the 42 page book from u so I’m gonna get right on it! Thank u so much for the encouragement and inspiration

  3. Julie Martinez says

    Natalie-thanks for your CD story. So many can’t relate to such a variety of odd symptoms or health issues. We w/CD children are so grateful for any support & understanding & new info on the subject. Your workout videos are great & I plan to get your DVD. Would love to see you post your fav snack or jeal ideas or even the occasional indulgences you splurge on. Is your daughter GF too?
    Julie

  4. Kayli says

    I have recently went to the Dr. For some of the same symptoms and tested me for celiacs and I’m scared. Scared of the change possible weight gain and other things.

  5. Lindsay says

    Oh my god this sounds like what I have, I have been back and fourth to doctors and pretty much been told the same things, thank you for sharing your story I will definitely be seeking further advice!

  6. Erin says

    I too had all those symptoms and decided to go off gluten and it’s been a month now and the bloating after every single meal symptom is still there :(
    Does it really take longer than a month to know?

    • says

      Hi Erin!

      Without knowing exactly what you are eating, it is hard to tell. Assuming you have been 100% gluten free for a month, you should feel a difference by now. The thing is, unless you are eating an unprocessed food diet, it can be easy for some gluten to sneak in there. If you are certain that you removed 100% of gluten and are still feeling bloated, I would check with your doctor. I hope this helps!!

  7. Sally Dellas says

    You were lucky to get a diagnosis in just two,years. I was treated by Kaiser for about 12 years for IBS.
    They sent me to a nutritionist finally and when she mentioned wheat and gluten allergies the light bulb
    came on! My daughter had celiac disease aa a child and it’s genetic, so there was my answer. Within
    a short time after going gluten free, all my problems cleared up. The bloating, gas, diarrhea, abdominal
    pain; all were gone permanently. I had had anemia, osteoporosis, joint problems and hypothyroidism–all
    related to celiac disease, but no physician ever thought of it, even when I landed in the ER for rehydration
    after an extended bout of diarrhea. One doctor muttered something about ” leaky gut” syndrome. I had
    ultrasound, upper and lower GI exams, even an EKG, but a simple blood test could have saved both me
    and Kaiser a lot of time, trouble and expense.
    I never had a biopsy done, but the change in diet speaks for itself.
    When my daughter was little, I was told she might “outgrow” the celiac disease, and I, of course, was only
    too glad to see she seemed to have not ill effects when I tried introducing small amounts of gluten back into
    her diet when she was around seven. It made my life easier, as there were virtually no gluten free foods
    available in those days (1950’s) and I had to make any baked goods from scratch with soy and rice flours.
    Now we know that a celiac patient must follow a lifelong gluten free diet, although my daughter does not
    believe she atill has it, She thinks she may have been misdiagnosed.
    And I believe that it is more like one in 133 in the United States that has celiac disease, or at lest is gluten
    sensitive. Bottom line is: avoid gluten in any form to stay healthy.

  8. Brenda Beatty says

    I, too, went for numerous tests over a two year period, with a final diagnosis of IBS. Finally, a holistic doctor suggested i do a detox diet for 6 weeks, and when i re-introduced gluten, that was the culprit! I asked her “why now”?, when humans have been eating wheat for thousands of years. She responded that none of her international patients have gluten sensitivity issues, because in those countries, GMO foods are not allowed. She believes it is the genetically modified wheat that is causing gluten sensitivity. I don’t have celiac, but do get horrific stomach pains, cramping, bloating, etc. if I eat gluten containing foods. I’m going to try an experiment using organic products, since I don’t think organic foods contain GMO products, and see if that makes a difference. Thanks for your article!

  9. Christina Bosi says

    So glad I read this! Your story describes ME! Going to get the blood test & see a GI doctor. I am going gluten free today!!! I will follow your post…Thank you!!! P.S. my sister’s name is Natalie <3 ;D

  10. danielle says

    I totally agree, I have only been gluten free for 2 weeks but am feeling better than I can ever remember. Just the Idea of gluten makes me feel sick.

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