A long overdue diagnosis of celiac disease is life-changing for a patient of the The Doctor’s House

Lee Ann: When did you first started feeling sick?

Jessica: As far back as when I was 7 years old which is 21 years ago.

Lee Ann: What symptoms were you experiencing?

Jessica: Mostly abdominal pain

Lee Ann: What was Dr. Okulaja’s correct diagnosis?

Jessica: Celiac disease

Lee Ann: How many times were you misdiagnosed during those 21 years?

Jessica: I was increasingly sick from the age of 7 until 28 when I was finally correctly diagnosed by Dr. Okulaja. From ages 18 to 28 I bounced around from one doctor to the next explaining all my symptoms and saying that I just didn’t feel well. I got answers from “it’s all in your head” to Irritable Bowel Syndrome (IBS), Psoriasis and Acid Reflux. Some of these things I was medicated for. For IBS the doctors suggested that I eat white bread and white pasta which was exactly the opposite of what I should have been doing. For ten years I sought help; I felt really really sick and I was getting worse every year. The general perception of the doctors I saw was that since I was a young healthy adult there couldn’t be anything really wrong with me.

In my 20s when I was so very sick it was a running joke from my family and friends people kept saying “Jessica is broken” because I was always sick and could never find out why.

Lee Ann: What treatments did these doctors suggest?

Jessica: I was prescribed Omeprazole to try to treat the acid reflux which I actually did have but it probably had nothing whatsoever to do with the Celiac Disease. That doctor was treating a surface-level symptom rather than digging in to find the underlying cause. I also had some rounds of antibiotics to treat stomach ulcers which I didn’t have. I was prescribed some topical cream for the psoriasis which I also didn’t have (turns out the rash was a symptom of the celiac disease).

Lee Ann: How did you meet Dr. Okulaja?

Jessica: In 2006 I was seeing a gastroenterologist (who by the way was another provider who didn’t recognize my issues as celiac disease). I asked him to recommend a good General Practitioner and he said that Dr. Okulaja was fabulous so I scheduled an appointment with her.

Lee Ann: Tell me about the moment when Dr. Okulaja gave you the correct diagnosis that you had been unable to get for 21 years

Jessica: I had recently been at the dentist for recurring problems and had chatted with the staff there. They knew about my “tummy troubles”. One of the women asked me “Have you ever considered that you might be allergic to some type of food like wheat?” It had never occurred to me and none of the physicians had ever brought that up.

I already had an appointment scheduled with Dr. Okulaja for the next week, so when I was in her office, and she was on her computer typing up the notes of my case I told her what the woman had said about “being allergic to something”. She suddenly stopped typing, frozen with her hands in mid-air. She turned her head 90 degrees looked me in the eyes and said “You have celiac disease and we are testing for it today.”

Dr. Okulaja called me when the results came in a few days later and said “You have raging celiac disease. You need to come back in as soon as possible to discuss what steps we are going to take.”

I was initially overwhelmed by the impact of being gluten-free for the rest of my life, but her correct diagnosis literally changed the course of my life.

Lee Ann: What treatment protocol are you on now for celiac disease?

Jessica: The treatment for celiac disease is a full-fledged gluten free lifestyle. I need to avoid it in foods, medications, lotions and even makeup. My dog has to be on a gluten free diet because I had to avoid the particles of gluten in his food. The lifestyle change has been hard, but it has totally changed my life for the better.

Lee Ann: How did getting this diagnosis and subsequently going gluten free improve your quality of life?

Jessica: In the pre-diagnosis years when doctors were telling me that “it is all in your head” I recall having to “heft myself up off of the couch” just to go about my daily business like work, errands etc. And this was in my 20’s when I was working 60-80 hours per week and going to grad school in the evenings and on the weekends. I am not a lazy person but I always “felt like a lazy person”. I had very low energy; it was a huge physical effort just to get off the couch. I was even falling down the stairs on a regular basis. I thought it was just due to clumsiness and not watching where I was walking. My husband and I even considered selling our house so we could move to a one-level house without stairs. It turned out that the celiac disease had so badly damaged my intestines that I was not absorbing nutrients. My B-12 level was almost fatally low and was probably the cause of all those falls. Not that we’ve fixed the B-12, I still have a house with stairs, and I don’t fall anymore!

Now I feel like I am able to accomplish so much more every day because I have so much more energy. Before I felt like I was “enduring my life” and now I feel like “I am really living it”.

In the early days of diagnosis when my husband and I were trying to start a family I can tell you with total confidence that because of my disastrous vitamin levels I would not have been able to carry a baby to term. And now I have two children ages two and five. I can say without hesitation that I credit Dr. Okulaja for both of my children. That’s how big the impact was that she had on me.

Lee Ann: How do you feel right now?

Jessica: On a scale of 1-10 I’m an 8. I still have some residual tummy troubles, but compared to my pre-diagnosis years where I would have rated my health a 3, that 5-point improvement is a huge and very significant improvement!

Lee Ann: What qualities does Dr. Okulaja have that outshine the other practitioners that you’ve been to?

Jessica: Dr. O is a sleuth! Her goal is to figure out why something is happening and fix that problem instead of just treating one symptom. She gets to the heart of the issue. She is very different and better than the other doctors I saw because she is more inclined to see “the whole patient”. Yes, she will prescribe a medication or vitamins if necessary, but she is also very open about bringing on other types of support when needed. For instance, she suggested that I go to physical therapy so I could learn bone-building exercises and a dietician to help me figure out a healthy gluten-free diet. She has a holistic approach which helps optimize everything that needs fixing instead of simply treating individual symptoms.

Lee Ann: What is your current relationship with Dr. Okulaja?

Jessica: Our typical celiac-related relationship is that I go in twice a year and she checks my blood for vitamin levels and a few other things like thyroid function. Because there are other issues that can pop up for people with celiac disease, she reviews all the results and if necessary she can tweak some things that need improvement/optimization. Dr. Okulaja is the only doctor that I know that does this. Her care enables me to “keep going and keep on living my life”.

Lee Ann: Anything else you want to say in closing?

Jessica: I hold a huge amount of gratitude in my heart for Dr. Okulaja. I told her that until the day I am 100 years old and sitting in a wheelchair I will still remember her and be grateful for the positive impact she has had on my life. Dr. Okulaja picked me up and dusted me off and showed me a new path. She cleaned me up and got me going. I’m the one who has to do the work of putting one foot in front of the other every day, but it was Dr. Okulaja who “found” that path for me and has enabled me to keep walking it and enjoying the beauty of life.

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