THE EXTRAORDINARY, TRUE FACE OF CELIAC DISEASE. Warning, This is heart wrenching.

[box type=”note_box” color=”btn_green”]Before you read this: In our line of business at Red Apple Lipstick, we have the great fortune of meeting a lot of wonderful women, who are all bound in a sisterhood of an Autoimmune disease.

This story is about Danielle, whose life was stopped by the worst case of Celiac Disease on record. As you will discover, she’s a fighter!

But there are just some things you can’t fight alone. Her very recent medical bills have skyrocketed to over $100,000.  For Celiac Awareness month, we not only wanted to share her amazing tale, but we would like to help raise money for her bills.

During the month of May 2013, Red Apple Lipstick is going to donate 3% of every makeup item purchased by our Red Apple Lipstick VIP Club Members directly to the medical bill of choice on Danielle’s behalf. Becoming a Red Apple Lipstick VIP Customer is 100% free, and nets you 20% off all our products, for life. You can register here if you are not already a member -> https://www.redapplelipstick.com/vip-club/[/box]

[dropcap1]T[/dropcap1]he tears started flowing, during our phone interview, when Danielle relived the day her doctor told her they would need to surgically remove her stomach…

… “I thought life was over,” she said.

Her tale begins much like the countless other conversations I have had with those of you who have finally been diagnosed with Celiac Disease, and I wonder, how many suffer in silence.

Danielle and Mother true story of celiac disease
Danielle and Mother

March 5, 2012. Danielle is a waitress at Chili’s and a college student, and has never heard of Celiac disease. But it strikes her hard for the first time, anyway.

An extreme wave of nausea, followed by violent vomiting causes her to pull over to the side of the road, and call her mom, who rushed her straight to the ER. This was not normal.

The doctors diagnosed her with a “stomach bug” and sent her home with pain meds and anti-nausea medication.

She was back at the ER six hours later.

She waited in the packed ER for over 6 hours, doubled over in pain and vomiting until she could be seen. She was finally transported to a bed in the middle of a hallway because the ER was so full.

After numerous blood tests and multiple xrays and CT scans, the doctors found nothing.

Danielle was discharged at 2 a.m. She was told it was “probably” an ulcer, and she needed to see a Gastroenterologist as an outpatient.

So she did. She booked the first available appointment with the recommended Gastroenterologist. After some questioning and looking at the X-Rays, he told her what we have heard so many report.

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He told her the pain was…

…”ALL IN YOUR HEAD.”

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But he went a step further. Danielle was stunned when he accused her of “just seeking pain medications for recreational use.”

For measure, he requested a few lab tests that had nothing to do with Celiac Disease.

She was appalled, she’s not a druggy. “I know my body, and something ISN’T right,” she pleaded.

During our phone interview, she explained the immense frustration with the inability to figure out what was going on, as she went to doctor after doctor, who each schluffed off her problems to the next.

Hospitalized celiac disease case
Hospitalized

Incredibly odd things were happening to her body. Her stomach would double in size at the time of a pain spurt. It visibly ballooned to look like she was 5 months pregnant. She cried out in pain at night, doubled over – unable to even get in her own bed because of its height.

How could nothing show up on all these tests?!” she relented.

As is common with Celiac Disease, the bulk of her symptoms sound so common individually: pain, nausea, vomiting, bloating… such common symptoms of so many common diagnoses… food poisoning, gastroenteritis, simple stomach bug, and PMS symptoms. But all in unison, life was incredibly difficult.

She missed both Thanksgiving and Christmas that year, because she was in the hospital for both, still with no answers.

And then, her Angel arrived. She was visited by “one more Gastroenterologist,” who suspected something no one else had.

He performed an endoscopy, and found exactly what he was looking for. The villi in her small intestines were virtually destroyed, non-existent, and she was delivered the news – Extreme Celiac Sprue.

[blockquote]She was sent to UCLA for further study, and they told Danielle that this was the absolute most devastating case of Celiac Sprue they had ever seen.[/blockquote]

She recalled being a child in an Italian family. Her family thought it was so strange that this young Italian girl didn’t like pizza. She related how her mother would encourage her to eat it, but at such a young age, she didn’t have the ability to tell her mother that she just didn’t feel good after eating it.

What a relief to finally have a diagnosis!

Her pain at the time of diagnosis was 10 to the power of 3. The doctors began emergency intervention, even so far as moving her to a feeding tube.

The doctors brought in a dietician who specialized in Celiac Sprue, and together they counseled on this life changing disease.

The dietician explained in great detail all the foods to avoid, and the foods to enjoy. And hardships continued, “the devastating part… she told me I needed to change all my beauty products too.”

Danielle is the girl who always looks dolled up, even going to the mailbox. It makes her feel confident and beautiful. The thought of not being able to wear lipstick or dye her hair broke her heart, but she carried on.

She lived a completely gluten free lifestyle for over 6 months, and barely felt any better.  As testing continued, the doctor ordered a Gastro emptying test, which consisted of eating a radioactive hardboiled egg test (which was awful). They found that her stomach only emptied 2% in 90 minutes. And her doctor brought her the hard news. He told her that she had gastroparesis, a condition in which the stomach is so damaged, that it is almost completely paralyzed, another of the cascading effects of Celiac Sprue. And he broke the news…

… more than likely, we’ll have to remove your stomach …

Danielle’s voice shook as she relived the moment with me on the telephone, and I could hear the tears streaming from her eyes.

“That was the end,” she says. “I thought life was over.”

She decided, it was time to fight back!

Danielle followed her GI’s recommendation to see an acupuncturist, who helped immensely with the pain. The acupuncturist referred her to an Oriental Medicine Doctor who was known for being able to diagnose and treat even the most obscure of diseases, and with her severe case, he spoke to her immediately.

He caught something western medicine had missed.

An hours drive away, the OMD sat and read every lab/pathology report and listened to her story. He ran his own tests based on acupressure points, and determined multiple issues.

She was having an autoimmune reaction not only to gluten, but chicken, dairy, eggs, and mold in the carpet of her home, AND she had a bacterial infection in her blood. He gave her 14 herbs to take 4 times a day. This was intended to clear the bacterial infection she had developed. Within a week, her bacterial level dropped from 900 to 90.

A week after she began taking the herbs, she heard her stomach growl. Her voice chokes again, as she explains her elation. “I called my mom immediately…’my stomach growled!! That must mean it’s starting to work again!’” Danielle’s stomach had not worked in a year.

celiac disease patient danielle with supportive grandparents
Danielle With Her Supportive Grandparents

She’s totally comforted knowing that she is on the path to healing. Her GI doctor texts her regularly to see how she’s feeling, and she is so proud to tell him that she’s completely curable. They will not have to remove her stomach. They will not take away her life. All she has to do is live a healthy gluten free and vegan lifestyle, and her life quality should improve.

I ask her, “are you nauseated and in pain right now?”

Yes,” she answered, with a smile on her voice. Danielle’s optimism and cheer is infectious. You can hear the pain in her voice of all the obstacles she overcame, and all the pain she still has. But her positivity shines through.

I really want to finish school,” she explains. “It was always my dream to get my PhD in Philosophy from UCLA and teach as a professor at a university.

She was in her third year of college, when she had to drop out because of the health complications.

Her medical bills are creeping up to the $100,000 mark – and she was provided no help from disability because it’s hard to prove a tip salary from Chili’s.

Her grandparents and mother have been incredibly supportive along the way, helping to pay her car note, and helping her shower. Helping to prepare food, take her to doctor’s appointments, and lending emotional support.

Her positive attitude doesn’t stop there. “I was there,” she says, “ when I thought the world was ending.  But I never knew how good a fighter I was until I was fighting for my life.”

[style_box color=”#000000″ title=”Her Message To You?”]She encourages every man and woman who knows there is something not right with his or her body, to listen to your gut. “You know your own body.” Just know that some doctors might not listen to you, move on. Find another doctor who will. “Don’t give up, keep looking until someone will listen.

She felt utterly alone, when people would tell her “I know what you’re going through,” when really they had no clue. But, she stresses to me and you “we are NOT alone.  Do your research online, there are lots of people going through this same thing, there are community support groups and forums of people that will support and encourage you.

“And above all, do what makes you feel confident and beautiful.  I would be laying on the couch putting on just a little makeup so that when I caught a glimpse of myself in the mirror on the way to the bathroom I didn’t look sick, I looked lively.  Whatever that is, that makes you feel like a fighter, do it. We only live once, this life is worth fighting for.”

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Ladies, Danielle and her family need our help.  This is our chance to help them with their extremely high medical bills that do nothing but increase with further treatments – let’s lend a hand.

In support of Danielle and Celiac Awareness Month, Red Apple Lipstick will donate 3% of every makeup item sold that was purchased using the May 2013 Red Apple VIP 20% Off Coupon Code to the medical bill of her choice for this entire month.

Some of you have been in this situation, or had a loved one in this situation, what a blessing to be able to donate in support of this young girl, fighting courageously for her life. We want to raise $20,000. Let’s do it!!!

Andrea Harper

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