Dani's Diary: The diagnosis that just changed my life - WKOW 27: Madison, WI Breaking News, Weather and Sports

Dani's Diary: The diagnosis that just changed my life

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MADISON (WKOW) -- Not long after our triplets were born in April 2015, I started having health problems. I figured it was from the stress and heartache of losing them. At first, it was little things: skin rashes, colds. But I started getting sick a lot and feeling exhausted all the time. I thought I had allergies or my immune system was shot or maybe I was depressed. Who wouldn't be depressed after watching three children pass away?

But when I seemed to have a new symptom every week and those symptoms lasted for months and months, I started to doubt they were real. And I know my husband did too. I considered whether I was making up "illnesses" in my head.

Still, I continued to get (what doctors diagnosed as) sinus infections, ear infections, bronchitis, vertigo. I was so tired of going to medical doctors I decided to try an acupuncturist to see if he could change my path somehow from sickly to healthy. A friend of mine had suggested it. One had helped her with allergies. Since I thought that's what it might be, I tried it. As he placed his fingers on my pulse, he said, "Well, you don't have allergies. But your red blood cell count is low. It probably hasn't been replenished since you gave birth. Eat some red meat and get on an iron supplement." Great. Thanks, I thought. 

Little did we both know, his diagnosis was spot on and would lead me on a path to health.... eventually. (I still owe him a thank you note.)

Although I was skeptical at that point, I did start taking a food-based iron supplement and ate more red meat. Mainly because my whole life, I did have a low iron count and knew it. Whether I went to give blood and was denied for low hemoglobin or a blood test at the doctor's office showed I was anemic, I just assumed that was "my normal." I never thought much of it.

That's when I started having terrible stomach pains. Some days I was nauseous. Some days there were sharp pains in specific areas of my abdomen. For several days I would have trouble "going" to the bathroom. The next three I would be running to get there in time. This lasted for about two months before I finally made an appointment to see my primary care physician.

My doctor asked me if anything changed about my diet. "Why yes, I started taking an iron supplement. I've been eating more red meat." He of course asked why and I told him I had always had low iron and about the trip to the acupuncturist. I showed him the supplement I was taking and he said the dosage was extremely high: about 600 mg per day. He suggested I take about 25 mg every other day, and said that was probably what was causing my tummy problems. What an idiot I was! 

The doctor decided to check my iron levels (I'm sure expecting them to be very high on that dosage), but said if I was still not feeling well in two weeks, I should see a gastroenterologist. In the meantime, I should get on the lower dose iron supplement.

I did as told and waited for my blood test results. My tummy problems persisted and the results showed.... shocker.... I was still anemic even on that high dose iron pill. Hmmm. Two weeks later I was off to a gastroenterologist. 

The specialist looked at me and my medical chart for about one minute and pretty much had the answer right away: Celiac Disease. I had heard of that before, but couldn't place it at first. Please continue, I thought to myself.

"You're a pretty small woman," the gastroenterologist said. I'd been that way all my life. I thought it was from being a competitive gymnast. But even among gymnasts, who are all small, I was by far the tiniest. He continued with a few questions: Had I lost weight recently? Yes. Was I tired? Extremely. What were my bowels doing? I'll spare you those details.

Celiac Disease is an auto-immune disorder where ingesting gluten leads to damage of your small intestine. Gluten is the protein found in wheat, barley and rye. People with Celiac Disease are allergic to gluten, so when they eat it, their body responds by damaging the villi along the small intestine that help absorb nutrients. When the villi are damaged, your body can't absorb nutrients, and in some cases (like mine), carbohydrates. Celiacs are commonly deficient in fiber, iron, calcium, magnesium, zinc, folate, Vitamin B12, Vitamin D, as well as calories, protein and other nutrients (Information from the Celiac Disease Foundation - celiac.org).

As a journalist, I went home that day and researched everything I could about the disease. I didn't even have a diagnosis yet, but after reading all I could, I knew this was my answer. It fit. Not just for the last nine months I had been getting sick. But it explained so much of my life. Celiac Disease can lead to other serious health problems if you don't treat it. Many on the list, I had already been diagnosed with:

Infertility and Miscarriage 
Pre-term Labor
Low Birth Weight
Epilepsy and Seizures
Iron deficiency anemia
Short stature
Growth Delays
Late Onset Puberty

My infertility has so far, been unexplained. I have always miscarried very early in pregnancy, around 8 weeks or earlier. I also had one ectopic pregnancy that caused internal bleeding when my Fallopian tube ruptured. I was lucky I "felt funny" during a morning news broadcast and drove myself to the emergency room that day to have emergency surgery, otherwise I might have died. A small U.S. study last year linked Celiac disease with miscarriages and preterm deliveries. Many of you know I delivered my triplets early, which is common with multiples. But I also went into labor early with my daughter Rylan - twice. Doctors were able to stop labor and I eventually had her at 38 weeks. But she was only 5 pounds when she was born.

I also read an article where a registered dietitian said pregnancy could trigger your Celiac Disease. Seems very interesting, considering I started having symptoms not long after I gave birth to my sons. From what I've gathered from my doctor and his nurse, the disease is not with you from birth. It "happens" at some point in your life. But I do know of a friend whose young daughter started having symptoms when she was very young - one year old. They didn't know why their baby vomited every day and was so pale, until she was diagnosed with Celiac Disease on her 2nd birthday. Now they are a gluten-free family and their daughter is a completely different little girl! Her skin color changed, she started gaining weight and she came out of her shell. Her parents once thought she was just shy, but within two weeks of going gluten-free, they realized she was actually very outgoing and talkative. 

To confirm that's what I was dealing with, my gastroenterologist first needed to test my blood for antibodies. He did what's called a tTG-IgA test. Anything higher than 10 would mean you likely have Celiac Disease. My result was 100. So I was scheduled for an upper endoscopy to biopsy my small intestine. By this point, I was just ready to get on a gluten-free diet. But when you have that procedure, you have to keep eating wheat to ensure your results are accurate. So I took the nurse's advice and ate everything I knew I could never have again one last time. That includes beer, people! 

When my biopsy results confirmed Celiac, I was simply relieved. I had an explanation for why I had been feeling terrible the past nine months. I started a gluten-free diet right away, and I have been very strict with it. In fact, I know exactly when I've mistakenly eaten something with hidden gluten in it because my stomach feels terrible the next day. By the way, there are MANY things with gluten hidden in them, like some salad dressings, soy sauce, some mustards, etc. I have to read every label.

I've been on a gluten-free diet for about a month, but I can honestly say it's already made a world of difference for me. Within two days (yes - days), my stomach pains had stopped. The "bowel problems" worked themselves out within a week. I started working out because I had more energy and even though I haven't gained any weight back yet, people have told me that I look healthier. And I feel stronger too. I had started to feel like a weakling.

I'm sure I still have a long way to go. And that's exciting, actually, thinking my body might be able to improve even more. I wonder how this diet might affect my migraines, my seizure disorder..... my infertility. I don't know if I want another child. I'm curious to know whether this disease was to blame for my problems, but that's not a reason to try and get pregnant. And my doctor says there's no way to prove my Celiac disease is connected to my other health problems. It may not be. But who knows?

My doctor did say Celiac Disease is very common, but also under-diagnosed and many times, misdiagnosed for years and years. That must be so frustrating for the many people who are suffering, since the answer to a healthier, happier life is so simple. We all know some allergies are no joke, and this is one that can do severe damage to your body if left untreated. So if any of this sounds familiar to you, I encourage you to look into a gluten-free diet or talk to your doctor about the possibilities of having Celiac Disease. 

In the meantime, I wanted to give you some resources (below) that I've found helpful. I've even downloaded the free app "Find Me Gluten Free" to find area grocery stores that have decent GF sections and restaurants that offer GF options. There are, of course, many other apps available.

For those of you with Celiac Disease or a gluten sensitivity that are far ahead of me, please share recipes, restaurants, favorite snacks and such in the comments or on my Facebook page
And feel free to pass this blog onto friends who might want to read it too.

More information on Celiac disease

Foods with gluten in them

Resources for Madison area people

Another good Celiac website

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