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 -> http://www.redapplelipstick.com/vip-club/[/box]

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[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

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

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.

Danielle With Her 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!!!

Comments

  1. Alyssa Llamas says

    Danielle, if I knew back at St. Maria Goretti this would be going on, I would have stayed and tried to be by your side.. You are a VERY strong women and I am SO proud of you!! I’m glad I finally got to here your whole story.. Just know you are always in my heart and prayers.. I love looking at all our old pictures together.. I miss you VERY much!! I will text you the next time I go out there.. I would love to see you && momma..

  2. Anne Price says

    Danielle, your courage to fight on and find an answer to your life challenging health issues is encouraging to others not to give up. I respect the medical community for their test and evaluations and yet I also study Integrative medicine such as offered by the Chinese healers with thousands of years of healing. My love to you, your other Grandmother Anne Price.

  3. Kate Kelly says

    How can I get in touch with this girl? I am going through exactly the same thing. Please let me know how I can talk to her.

  4. says

    Thanks for sharing your story. It is much like mine from last year. I’ve been sick since high school and pregnancy masked it. Being undiagnosed for so long has led to ms. I too am with a naturopath and am starting to fight back. Hang in there. It’s a sad day when you must pay out if pocket for all of your healthcare to actually get help!! I feel for you!!

  5. Teresa Lloyd says

    Like you Danielle I had to be persistant in telling others that I new something was not right with what was going on inside my body. I am allergic to gluten. It took about twelve years for me to find that out. Crazy huh? Well, just remember,
    the “squeeky wheel gets the oil”, thank goodness you were just as persistant.
    I wish nothing but the best for you!

  6. Melissa says

    Thank you for sharing your story and I’m so happy that you continued to advocate for yourself despite what the doctors said. We know our bodies better than anyone and we know when something is not right. Blessings to you and your love of life.

  7. linda suibielski says

    hi danielle,thank you first of all for your story. i found out october 2010 that i had celiac ,i am 65 now and cant believe it took so long to find out .for years i knew something was wrong. had lots of stomach issues and was told it was a bug. you are a very brave girl and such an inspiration to us all. may god bless you and may you continue to heal.

  8. Lynne Albert says

    Thank you so much for posting this…I have had 4 colonoscopies,,,in the past 3 years….they cannot pinpoint exactly what I have…with all the information you have posted . I will make sure I see a Gaestreontoligist…or whatever they are called….you are a real inspiration to all of us who have this kind of disease

  9. Amanda Sanoffsky says

    Danielle: Good for you for not giving up and knowing there was something wrong. Life is good and there are angels around, just ask God to bring them to you and you will receive them. I know the financial debt is a heartache, I had it once at one time, I wish I could send you the money to pay off the debt, but alas I am not able. I will however do some purchases to red apple, and I want you to do something too. Enjoy every day and be thankful for all you have. When you live in Gratitude all things are possible and can be accomplished. A big gluten free hug to you.

  10. Debbie Witham says

    Danielle , God be with you , I am sending out prayers . I to have Celiac Disease & a few others too, it is all hard to go though , with the higher power , we can do all things .

  11. Debbie Matthews (Mom) says

    You are an amazing, beautiful and brave young woman. We had quite a few scary nights in the hospital and you never stopped fighting. I wish more than anything else in the world I could take your pain and suffering away and give you the beautiful life you so deserve. Please always know that you are never alone. God has blessed you as a shining star to shine and light the way for others to never give up. I love you!!!

    Thank you Red Apple Lipstick for their wonderful products and the guardians angels that are sent from above for their kindness and thoughtfulness. A truly unique and amazing company!! Mom

  12. Marlene miller says

    Hoping doctors will be educated on this disease, because my stomach is nearly intolerant to everything, they need to test or use elimination diet when minor symptoms. Occur , , not when ruined or almost killed someone :(

  13. Christine says

    God bless you Danielle. I pray it will get better for you – with your positive attitude I don’t see how it can’t. I’ll keep you in my thoughts. Best of Luck.

  14. Danielle says

    Thank you all so much!! I am so honored and blessed to have this opportunity to share my story with so many people who are going through their own health issues! I promise to keep fighting this battle, not only for myself, but for others so they know we can make it through this together and that you are never alone in your fight! I am eternally grateful for all of the prayers from family, friends, all of you, and for Red Apple Lipstick! KEEP FIGHTING, WE CAN DO THIS TOGETHER!!!

    • Amber says

      Hi Danielle,

      I am glad you are feeling better! In December after having been very sick for the past three years, it was confirmed that I have Celiac disease even tho the blood test says I don’t. I have been tested for Gastroparesis and my emptying tests came out fine, but when I had an endoscopy done, I still had chicken in my stomach, so they think I do have Gastroparesis and that is what is causing my nausea. I have been going to an acupuncturist, allergist, GI, naturopath, etc. Do you know what type of test your acupuncturist ran on you to find out what you are intolerant of? I did an elimination diet on my own, but haven’t been able to pinpoint anything. I would love to hear from you.

      Thanks!
      Amber

  15. sandy says

    DANIELLE YOU ARE A VERY BRAVE YOUNG LADY I WAS TOLD IN OCT OF 2012 THAT I HAVE CELIAC I HAD BEEN TOO A LOT OF DR, AND I WAS TOLD IT WAS ALL IN MY HEAD I WILL BE 67 MAY 14 I AM STILL HAVE TROUBLE FINEING MAKE UO AND FOOD BUT YOU ARE SO BRAVE JUST HANG IN THERE GOD WILL SEE YOU THROUGH I WISH I COUL HELP YOU MORE THANK YOU FOR YOUR STORY AND GOD BLESS YOU AND FAMILY I WILL BE PRAYING FOR YOU WOULD LOVE TO HERE FROM YOU KEEP UP THE GOOD WORK

  16. Carolyn says

    Thank you Danielle! You have truly inspired me! I hope that you continue to fight and that your dreams do come true. God Bless you!

  17. Carolyn says

    Thank you Danielle! You have truly inspired me, by your story. I do hope that you continue your fight and that your dreams come true. God Bless you!

  18. Claudia says

    I hope you get to live the dreams you have. Never give up. What you went through, makes my Celiac disease look like a cake walk. I definitely going to use my coupon. Since I have about all the Red Apple I will ever need, I am going to give a few gifts to my friends. Take care and God bless.

  19. Anne says

    Danielle, my heart truly goes out to you. I am so happy you didn’t have to lose your stomach and that you are having relief from your pain at times. I am praying for you, may healing energy, love and light surround you and restore your body and strength and may any time you lost in your life, be recompensed to you. It can happen, miracles are real. I wish you a healthy happy life.

  20. Sue says

    Danielle, I am visualizing you well, healthy, and successfully coping with your situation! best of luck, and I’m happy to chip in!

  21. katieb says

    What a story–what a brave girl!! I can totally relate as my 2 children have severe Celiac disease also. My college age daughter has been out of work and barely able to attend her classes, let alone study, from her struggles with accidental glutenings causing her extreme disabling back pain, among her other typial symptoms. Our son bleeds profusely with gluten and is struggling to finish up high school with his awful glutening symptoms that leave him weak, cold and with aching joints. Celiac is a curse in a processed gluten food world—gluten is everywhere–even in Certified Gluten free food, even in certain brands of water filters—making healing from Celiac an almost impossible task! My husband and I both also suffer with Celiac, but not to the extent our 2 kids do and it’s absolutely heartbreaking!! As soon as I can, I am most definitely going to make a donation to Danielle’s medical relief fund. She should consider looking up and consulting with Dr. Peter Osborne who is one of the leading ‘last resort’ MDs who can fix lingering Celiac problems—we are saving up for our whole family to pay him a visit in Texas. I wish this girl the best of luck and will be keeping her in my prayers ;)

  22. Kristine says

    Hang in there, Danielle. You’re beautiful and a fighter. Crazy Celiac Disease wreaks havoc on the body. I’ve been gluten free for 4 years, diagnosed at 50 yrs. old. No one would believe anything was wrong with me for over 25 years – and all that gluten doing all that damage! Jay Harper seems like a pretty cool guy – I will be placing my May order to help out with this fundraiser.

  23. Lynda Abeyta says

    I was hoping your outcome would be this one. I to see a Holistic healer who has help me to realize that I have allergies to alot more than gluten. God Bless the people who directed you to them. Keep the faith

  24. Janice Constantine says

    Incredible story Danielle and what a lesson for us all to trust your “gut” like you did and don’t give up!! Good luck to you and continue your strong will to keep fighting!!! Also hat’s off to Red Apple Lipstick for sharing this story and donating to such a great cause!

  25. ELSA JACOB ALEXANDER says

    Jesus said ,”you shall know the truth and the truth shall set you free.May danielle’ s testimony be an inspiration to many.

  26. Samantha says

    I am amazed at your perseverance and the help you are providing to others by telling your story. I will be helping by buying RAL products and praying for you and your family. God Bless!

  27. Teresa says

    I too, have an autoimmune disease. I knew something was wrong with me and I kept telling my doctor’s this. Mine is Sjogrin’s Syndrome. It’s made my liver fatty, I’m extremely tired most of the time, I’ve gained so much weight that I’m feeling overwhelmed. I have developed 5 skin diseases which I’m trying to control. My right lung is about 70% full of granuloma, I have pulmonary hypertension. I get migraine headaches, I get bronchitis and need to take antibiotics, I could go on and on. I’m 64 years old. I’ve probably had this syndrome for about 20 years. My mother had the same symptoms. My sister had rheumatic fever, which is autoimmune. My hospital bills was over 150,000 last year. I love your lipstick and it gives a little sunshine into my world when I get compliments concerning it. Thank you for inventing all these wonderful lipsticks!

  28. Leah Ferguson says

    I have issues also…could Danielle please send her doctor’s name and the acupucturist please….my daughter lives in California and I could go there. God bless you and we will be praying for you.

  29. Debbie Martin says

    God bless you, Danielle! You are such an inspiration. Thank you for sharing your story. I will keep you in my prayers. God is still in the miracle business!

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