FINALLY at almost 40
At the age of 37, I was diagnosed with Celiac Sprue. And I was THRILLED!
The one thing people ask again and again is, “Why did it take so long to be diagnosed?”
Short answer- because I was an underweight athlete who was constipated. Long answer? Because over 85% of people are never diagnosed.
Check out my interview with CNN about my living with Celiac.
Herein begins my life long story of ‘IBS’ finally diagnosed as Celiac…
For as long as I (and my family) can remember I have struggled with constipation, which is a symptom of celiac disease. For months I would have weeks of constipation followed by days of diarrhea. I remember dreading bowel movements (BM’s) because it was such a difficult task and sitting on pillows at the kitchen table because I was so sore from using the bathroom non-stop (likely TMI for many of my patients- if it helps a couple of people I’m happy to share!) This became the family joke. Now, that may not sound pleasant, but the reason I am using these ‘gory’ details is to try to WAKE UP the world. I never had any viral symptoms, nor did my family members have the same symptoms, so why didn’t a pediatrician investigate my bowels further?
When I was 16 years old, my mother turned to me one day after I complained, yet again, about a stomach ache and she said, “You always have a stomach ache!” She asked me when the last time I went to the bathroom was…and I couldn’t remember. As it turned out, it had been almost 2 weeks! I don’t blame my mother; she was so busy with 4 children and at 16 I wasn’t exactly forthcoming with my bowel habits.
Raisin Bran, Metamucil, Prunes, Oh My!
The pediatrician then sent me to a GI specialist who put me through a barium enema and an upper GI which was miserable and “normal”. So, like most with IBS, I would find ways to make my bowels work (raisin bran, Metamucil, prunes, anything). Two years later I would go off to college and struggle with using community bathrooms, trying to find empty ones, when I was in pain with constipation or when I was embarrassed with diarrhea.
As I got older, I was used to having “IBS”, however, I would get discouraged each time I would watch my husband walk into the bathroom at the same time every day. I would be out somewhere (either out to dinner, on the beach or on a long drive) and I would have horrendous heartburn, diarrhea or gas pains; this was known as “attacks” or “Gurgle….BANG!” (I hope some find humor in that!). I lived my life on Cetricil, Metamucil, high fiber cereals, Triscuits, Gas x, Mylicon, Pepcid, and Tums… and immodium on the ‘bad’ days.
In the summer of 2006…
My sister was diagnosed with Celiac (with bloating being her only GI symptom). After my sister was diagnosed, I reviewed the Celiac symptom list – I had nearly all of them. “IBS”, Unexplained Infertility, GERD (reflux), headaches, fatigue, rectal bleeding, brain fog, underweight, headaches and life long anemia among other things.
I am sure some of you are thinking, “You are an NP, why wouldn’t you have recognized this?”
Simply put…. we weren’t taught it. Of course, it was mentioned in our training but never stressed as one of the diagnoses we should put in the top 5 “differential diagnoses”. Over and over we were taught that it was quite uncommon, with symptoms of diarrhea and nausea or vomiting and more as a diagnosis of severe malnutrition. However, I now know that Celiac Disease is very common and generally misdiagnosed (with a statistic of 1:100 having it but only 1:1,000 diagnosed). I told my PCP that I wanted the blood test (Tissue Transglutaminase IgG) and one week later she emailed me that I had “Celiac Sprue”.
The Change of A Life Time
After being diagnosed, I changed my diet completely to be ABSOLUTELY gluten free and within one week I started to go to the bathroom EVERY day and felt less tired. Some of you reading this might say “everyone is tired at some point and this was probably placebo effect”. You must experience this feeling of tired to understand it. It is truly a heavy, constant, overwhelming tired that left me cloudy.
My husband and family were very supportive, but it was a steep learning curve. They ‘suffered’ some with my grocery shopping habits changing and they saw a lot less bread and rolls on the table. Honestly, I knew this was better as we Americans eat too much-processed carbohydrates. Many times I would forget to buy cereal or bread because I just didn’t eat it anymore.
2 Months Later
About 2 months after I was diagnosed I saw my husband taking Tylenol and asked him why. He said, “I have a headache” and then it hit me! I hadn’t had a headache in 2 months!! And -as I looked in the cabinet, I saw the Pepcid- and realized I hadn’t taken one of those in 2 months either!! All those years I would mention this or that bothering me he would say “your daily aches and pains”, but this time when I mentioned not having a headache for over 2 months he said, “Yeah -you never complain anymore about your stomach or head or being tired!”
Four months after my diagnosis I had my labs checked and my TTG went from 180 to 4 and for the first time in my life, I wasn’t anemic and could give blood! I told the GI specialist that I had also noticed I hadn’t had heartburn or taken tums or Pepcid in months, but I was concerned, as I had actually gained 10 pounds in 3 months. He just shrugged and said, “that’s because your gut damage is repairing and you are now absorbing nutrients from food”. I have never been large- In fact, when I graduated high school at 5’8″ I was only 116 pounds (and no-one suspected perhaps there was a malnutrition issue??) but knew I had to now pay attention to what and how much I ate.
Family History
My parents had 4 children and 13 grandchildren. 1 son and his 3 children have never been tested. Of the other 13 people; 6 tested positive for Celiac and 3 are Gluten Intolerant.
The good that has come from this diagnosis is OUR HEALTH… and hopefully the realization to many of you that this is not uncommon, yet very under-diagnosed and misdiagnosed. And for those who say they feel “gluten-free is just a trend” have not read the research of Dr. A. Fasano who reveals 1:7 people are intolerant to gluten and all humans produce Zonulin with consumption of gluten which can lead to Intestinal Permeability for many.
The Power of Sharing
The other amazing thing that came from this diagnosis was a mission for sharing and empowering others with IBS to get better. And my journey into Integrative and Functional Medicine began. I shared my story with countless patients, with my NP students and now as a Certified Gluten Specialist; it is my honor to sit with patients, listen to their ENTIRE LIFE story for clues and pieces to their health puzzle. We have the gift of higher sensitive Celiac testing than traditional medicine and the know-how to work with the dietary changes that come along with both Celiac and Gluten intolerance or sensitivity.
Thank you for letting me share my story. I so hope it changes the life of one of your friends or family who may be suffering from undiagnosed Celiac. Check out my interview with CNN about living with Celiac.
“Finding 4 Better Health was a blessing after many years of traditional medicinal doctors /Endocrinologists being unable to get me to feeling optimal. Dr Zub listened to me, truly heard me & devised a proactive plan for me to have a better life. My body is still healing, but I am no longer barely functioning to get through my daily life. I can exercise again without being completely depleted of energy. I have been able to successfully lose 20 pounds. I feel I can always contact Dr. Zub with any questions or concerns I may have. We continue to work together to find the right course of action for my health. I can’t say enough great things about their practice.”
