The below is a post I asked my friend, Alexa, to write regarding her journey to discovering she had Celiac Disease. You may remember, Alexa from her previous post back in December called “I am a marathoner!” Alexa will go into details about it but what I found most amazing about Alexa’s journey is that she truly listened to her body. She knew something was wrong and pushed her doctors to do tests. And then, Alexa didn’t let her recent healthiness experiences be a limitation for what she can accomplish. Here is Alexa’s journey:
It all started earlier this year, I’d put about 10 pounds depending on the day. At first I thought they were Christmas pounds, or from when I was recovering from a stress fracture around Thanksgiving and not being as active. However, as I upped my activity level, and ate even healthier than normal, they just weren’t going away, in fact, I even gained a bit more weight. The weirdest thing was, all the weight was in my abdomen, and I usually gain weight in my face first. My clothes were not fitting well, and I felt like my mid-section always felt bloated.
It came to a head when I hopped on the scale on particular Friday morning to see how my week’s worth of strict eating and working out had paid off, to see I’d gained three pounds. WHAT?!? In total I had gained 12- 15 pounds since our wedding last June, depending on the day. This was NOT normal for me. I am usually pretty consistent with my weight.
Being that there is a history of Thyroid problems in my family, which can be a cause of unexplained weight gain or loss, I wanted to have mine tested. During my Google search on unexplained weight gain, I also came across something else, Celiac Disease. According to Mayo Clinic, Celiac is the allergy to Gluten, and causes your intestine to basically be worn down, and not be able to absorb nutrients. Gluten is found mainly in wheat, oats barley and rye.
I knew a little about the condition, because my friend Amy’s daughter was diagnosed at a young age, and Amy runs the Savvy Celiac blog to raise awareness about the disease. I contacted Amy and asked her if my symptoms warranted a test for Celiac when I went in, and she said yes. She also warned me that some doctors are very uninformed about the disease, and may try to discourage me from getting the test, but that I should insist.
Amy sure was right. The doctor I saw (not my normal one) was hesitant to test me, saying that most people who have Celiac, lose weight not gain (a total myth I’ve learned), but I insisted that he test me, if only for peace of mind. I have good health insurance, I was getting blood drawn anyway, what is another test?
He agreed after my persistence, and the following week when my results came back I had a positive result for Celiac. That a normal test was under 20, and my test read at 132. I was so glad I stood my ground and got this test.
Over the next couple of weeks, I had a biopsy done of my small intestine, which came back as a positive indicator of Celiac. I met with a Gastro Intestinal Nurse Practitioner who spoke to me more about how my diet would be changing. She told me that because of the significant damage to my intestine, I need to be on a “not a crumb of Gluten” diet.
Throughout this whole process, I thought back to how happy I was that insisted on being tested for this, that I stood my ground at my initial doctor’s visit. I thought of the suffering and anguish I would have gone through had I not had Amy as a resource to even know that this condition could be affecting me.
Left untreated and without a diet change, Celiac Disease can cause brain, peripheral nervous system, bones or liver damage. It can also cause infertility and increase your likelihood of developing cancer.
As I stated before, Celiac isn’t something a lot of doctors outside of the specialty know much about, and is often misdiagnosed. The symptoms are things many people don’t talk about: bloating, gas, diarrhea, and weight gain or loss, just to name a few.
In the short time that I developed Celiac, roughly in the past 12-18 months I’m guessing, I found out that my small intestine have no signs of villi now (the small fingers that absorb food and nutrients) and I’ve suffered significant bone loss that cannot be replaced, including 20% of my spine. My villi will grow back over the next year as I stick to a strict Gluten Free diet, my bone mass, however, will never return.
The reason Jen wanted me to share this story with you, is so that it may open your eyes to this possible condition in you, or a friend or family member. I don’t want anyone to have to suffer with this disease and feel as sluggish, bloated and nasty as I did pre-diagnosis. I also don’t want anyone else to experience the permanent repercussions of Celiac that I do.
I’m obviously not a medical professional, but if you’d like to ask me any questions, or offer any advice, I’d love to hear from you! Feel free to e-mail me at: AlexaTaleof2Cities@gmail.com.
{ 15 comments… read them below or add one }
Aw man. Thanks for sharing this. I’ve had all the symptoms for awhile except the losing weight part- I’ve been slowly gaining (so I thought I could rule it out). This makes me think I need to get tested, because I don’t want to just ignore it.
Note also that vague and persistent bloating, difficulty eating and feeling full quickly, abdominal pain, and digestive problems (gas, constipation, nausea and vomiting) are often the early and only signs of ovarian cancer until it is very advanced. These are symptoms that women are way too inclined to accept as “normal.” Be like Alexa and be sure these symptoms are taken seriously and everything is ruled out. Good luck, Alexa!
KH, Funny you say that, because that was a fear I had. I’m a WebMD addict (cough Hypochondriac cough) and I think I diagnosed myself with Ovarian cancer at least four times, and even made my doctors do an ultrasound once to check for masses because of my symptoms.
In all seriousness, you are right, and Ovarian Cancer is often over looked because of these symptoms and isn’t caught until it’s terminal. Be your own advocate!
Like Alexa, I too am on a Gluten Free diet. I do not have Celiac disease, but I do have a Gluten Intolerance. So please, if you test megative for Celiac, dont give up! Try the Gluten Free diet for just 2 weeks to make sure you are not intolerant like me! The discovery of my intolerance has changed my life!!! Less headaches, diarrhea, bloating and all! Truly a life saving decision to go Gluten Free.
Kudos to you for standing your ground with your doctor! There are a lot of conditions that doctors are not familiar with and some think you may be overreacting or that they know it all. But you are the one who knows your body best. And especially when a test is as minimally invasive as a blood test I dont see the harm in asking. Im glad you have your diagnosis and hope that everything from here goes all uphill for you!
Thanks for all the info! I worked with a woman who had this, and before she was diagnosed, it looked like she was pregnant and she wasn’t.
Glad you figured it out!
Thank you. My sister has Celiac’s and I kind of thought she was being wacky. I feel bad. I appreciate you helping us discuss this disease and raising awareness. It helps us all.
You know, I think a lot of us (including me until Alexa was diagnosed) didn’t really understand how bad Celiac Disease really is. I would hear someone say they were gluten-free and I think I just underestimated what it meant. Also, I originally thought being gluten-free was a decision, much like being vegan or vegetarian — it never dawned on me that it is instead like a peanut-allergy, that people can become physically ill if they consume gluten. {That said, there are some who choose to be gluten-free and do not have Celiac Disease}.
Agreed with Jen. I had to really contain myself to not go off on a guy working at a restaurant when I asked about gluten free and he said, “oh you people and your fad diets.” I bet he could see the steam coming out of my ears as I held my tongue!
Blargh! People can be awfully insensitive. Your such a trooper for going through all this and I enjoyed hearing your story.
We’ve learned a lot since one of my brother’s roommates was diagnosed. His unfortunately wasn’t found until he was in surgery for something else and they saw how destroyed his intestine was. His major problem was severe fatigue. When they game at their place everyone bring gluten free treats, so we’ve gotten good at finding options. Fortunately some local grocery stores have a gluten free section.
I just recently converted to a strong plant based eating plan, cutting out meat, most oils, fats and salt. Within two days of giving up meat, the menopausal hot flashes I had almost completely disappeared, and after a few weeks I realized that the ongoing tummy issues I had, which included gas, bloating, constipation and just general discomfort also just up and went away.
It got me thinking….. how many people simply live with discomfort and vague unexplainable symptoms? My tummy issues were so continual, and also so minor that I just thought it was part of getting older. I never expected that the food I was eating had anything to do with it. And to think that giving up meat would kick ass on hot flashes!?!?! Talk about amazing.
And just to test out whether or not it actually is the meat, I had a roast beef sandwich on Memorial Day. The next day, the hot flashes were back, and intensely so. One sandwich, one day.
And it TICKS ME OFF that people look at it as some fad, or worse yet, some pretentious high minded crap. Where’s the understanding that we need to take control of our bodies and health by making the smartest choices about what we eat and consume? It just chaps my hide.
I totally agree with you! I can live without a waiter or friend’s judgement about it, since I know my eating style is making a difference for my health!
I went gluten-free recently by recommendation from a hollistic doctor and I feel so much better for it. I haven’t been tested for Celiacs, but I do have an autoimmune thyroid disease(Hashimoto’s).
I did want to make a comment about your note about cutting allfat from your diet. I am not a dietician, but have learned that some fats are healthy and essential to consume. The healthy fats help your body absorb nutrients. For example, if you eat carrots or an apple it is best to pair it with a healthy fat (hummus or peanut/almond butter).
Check out this site for a list of healthy fats versus bad fats: http://www.helpguide.org/life/healthy_diet_fats.htm
Please change your definition, celiac is NOT an allergy to gluten, it is an autoimmune disease. When people think ‘allergy’, they think of the typical histamine reaction of people that have seasonal allergies or food allergies. Celiac is a different beast altogether.
I am just now finding your article and greatly appreciate you sharing! I was recently diagnosed with Celiac Disease after the last several years of suffering. I almost had my gall bladder removed because they were convinced that is what was causing my back pain, stomach pain, diarrhea and bloating. (Even though there wasn’t any “sludge” or stones!) Thankfully, my doctor said, “Let’s just try this test…” and now we know, I am 100% Celiac. The trouble now, is that I have been feeling sick still, 6 weeks gluten free, I slipped up and had some bread and now I am starting all over again. The weight gain part of it fascinates me. I have always been overweight, even when I was running 5 miles a day, 4 times a week and eating “healthy”. But because there was gluten in my diet, it never made much of an impact on my weight. I’m so thankful that there is a diagnosis now and that hopefully, things will start to turn around in how I feel and my weight!
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