Woman almost dies of Celiac disease because of mis-diagnosis

Introducing Jaie Benson, a new friend who went from near death to hope because her physician insisted she couldn’t have Celiac Disease because she was African-American. Here’s her story:

Just 6 weeks ago, I felt like I was dying. For the past 6 months, I have been really, really sick. Six weeks ago, I found out I have Celiac Disease. I can’t have gluten (wheat, rye or barley) or take any type of anti-inflammatory drugs. Last August, it was challenging for me to even lift my head off the pillow. I had a litany of things wrong with me, daily migraines, tingling and pain on my left side, extreme fatigue, circles so dark under my eyes concealer wouldn’t hide it, but the most crucial for me was the fogginess in my brain – I could not think logically and could not reason. I was confused, I had lost my edge and I was very scared. I had always been a healthy person. I ate organic, I exercised and mediated daily. I did not let anything stress me out.

For months my doctor could not find anything wrong with me. In late November, I went to the emergency room because I could no longer take the excruciating pain in my brain. One of the young interns came in and after a brief chat he said – from the symptoms you describe – it sounds like Celiac. Then he said – but maybe not – since you are African American. The cat scan revealed a small abnormality in my brain (the doctor said possible aneurism – which I refused to buy into) and they sent me home making me promise to see my doctor right away to get a referral to a neurologist along with some meds to kill the headache for the moment.

I went home and immediately started researching Celiac Disease and I almost fell on the floor. Just about every symptom I found ~ I had. I couldn’t believe it. I cried tears of joy because I no longer felt like I was crazy and that I was dying. According to what I was reading it could all be corrected through diet.

I went to my doctor later that week with all of the info I could print off and asked him to test me for Celiac. He looked at me and said…NO. I asked, “why”? His response, you don’t have it – you are African American, and it is only prevalent in people with European descent. I said but I have every symptom on these pages and I want the test. He said…NO, it will be a waste of time and money.

OK, people who know me call me the “Queen” of Positivity (at least for the past few years) but everything in me changed when this man told me NO. I think I grew three heads which all started spinning at the same time and from my look and tone when I said to him, “I want to be tested, I will be tested, NOW” he said, “Okay.”

Test results revealed I am allergic to gluten, I also have the “gene” for Celiac. Everyone on my Mom’s side of the family has always had stomach problems – now I know what those problems were. I had started a gluten-free diet even before the results were in and started to feel a little better each day.

Incidentally, the doctor, after realizing he was wrong, said absolutely nothing but that was okay: I was just so grateful to know that I had a chance to live. Today, I am gluten free, baking my own bread, and eating fresh foods. I was able to walk (not run yet) a mile and do four push-ups today.

Six weeks ago, I could not even walk up my driveway. I live on 4 acres and it was an absolute joy to feel the sun on my face this morning even in 14 degrees.

One thing I have learned is that unless we take care of ourselves we can’t go out there, “be” remarkable, and “do” remarkable things for others, our communities and the world. We only get one body in a lifetime…PLEASE make sure you are doing all you can to take care of it. That includes making the best eating choices, exercise when possible, and not stressing out over things we cannot control.

I strive everyday for wholeness in mind, body and spirit. I believe in giving a tenth of the day (24 hours) to myself and I split the 2.4 hours in thirds and give equally to my mind, my body and my spirit. A different sort of tithing. By loving myself enough to do this daily, it strengthens me to be there for others and help where I can.

I am getting better day by day. Heck, I was able to write today and for me this is a miracle.
One of the projects I am going to work on in 2009 will be raising awareness of Celiac (and leaky gut) among all ethnicities and I would love to also work on helping the poor eat and live better. If you have any info to share that I could use, please pass it along to me.