Life Events That Inspired Me To Create This Blog And A 12 Part Series About Celiac Disease And Gluten Intolerance
Recently, another blogger asked me how my blog evolved and what inspired me to write the 12 Part Series about celiac disease and gluten intolerance. I sat down and re-lived my story through words. For me, it re-confirmed how much I have learned, how much I have grown as a nurse and as a person, and how much healthier my family and I are now. All of these positive changes are due to my increased awareness and the maintenance of a gluten-free diet.
My Story
The idea of a blog evolved over time. By the time I was diagnosed in 2004, I was quite ill. I had suffered for 5 years with intermittent IBS, difficult pregnancies, multiple other symptoms, and a variety of diagnosis. I also had 3 little girls, ages 10 months, 2 years, and 4 years. My memory of that time in my life is a bit of a blur. While sick, I tried to find a little time in the evenings once my children were in bed to do some research and one night I came across Celiac Disease. Unfortunately, this is a disease that I only had about 5 minutes of training with in University and it was presented as a childhood disease. The symptoms matched mine so I put myself on a gluten-free diet and felt better. Fortunately, I saw another specialist (I had seen a specialist and had a colonoscopy prior to this) 2 weeks after that and he tested me for CD and everything came back positive. My family was screened and my one daughter’s test came back positive as well.
Since my CD diagnosis, I have been so busy focusing on raising my children, being involved at their school, working at our local hospital and keeping up to date with celiac disease. The sad realization that approximately 97% of individuals with Celiac Disease remain undiagnosed inspired me to fulfill a mission to do my part to increase diagnosis. Working with a variety of patients at the hospital has allowed me to identify potential Celiacs in the hospital population. Many undiagnosed Celiacs have frequent doctors visits and are admitted to the hospital with a variety of diagnosis. I have requested Celiac screening for many patients and luckily the doctors have been receptive to my requests. During this time, I was also mapping out a potential book between 5-6am each morning, prior to my children waking up. Once my youngest entered grade 1, I knew I could begin writing this book (A 12 Part Series About CD And Gluten Intolerance) and I decided to put it on a blog so it would be available free to others globally. I have found my blog translated into a variety of languages on the internet which is very encouraging.
Many are suffering and quite likely many are dying globally due to undiagnosed Celiac Disease and gluten intolerance. This breaks my heart when I think of grandparents being lost, couples dealing with infertility or pregnancy issues (potentially leading to loss of a baby), mothers struggling with illness, children with cognitive disabilities that may affect their ability to achieve their potential in life, and many others who are suffering with a variety of misdiagnosis. This is what I visualized while I wrote the 12 Part Series. I shed tears a number of times just thinking of all the celiac faces. All of this unnecessary suffering could be prevented with early recognition, diagnosis, and the maintenance of a gluten-free diet.
The lack of awareness can be frustrating, but I believe in unimaginable possibilities and that everyone, with Celiac disease and gluten intolerance, can in their own way create change. We can and will get the 97% down to 0!
Shelly
Note: I recommend waiting until CD/gluten sensitivity testing is complete before initiating a gluten-free diet because it may create a false negative. Discuss this with your MD or specialist. Always review your symptoms with a Medical Doctor and your specialists before you make any changes.
If all your celiac tests are negative, then you may still have a gluten intolerance/sensitivity. Celiac disease is only one form of gluten intolerance. Discuss a trial gluten-free diet (and a referral with a registered dietition) with your doctor.
Comments
2 Responses to “Life Events That Inspired Me To Create This Blog And A 12 Part Series About Celiac Disease And Gluten Intolerance”
Leave a Reply
Though I agree that people should wait to finish testing for a CD diagnosis, this isn’t always the best route. Some of us (myself and my four children included) have doctors that may know our medical history (for 10 + years) and still refuse to test, despite symptoms, because we don’t have ‘classic symptoms’ of Celiac. Also, some of us do not test positive, regardless of eating heaps of gluten. My IgA was <10 (it was an 8), so my doctor wrote me off. However, I had blisters on my legs for over 10 years, with no explanation, and a host of IBS symptoms. My daughters had other symptoms. A gene test (through Enterolab) revealed I had two 'gluten sensitive' genes but not Celiac genes. I decided to take my family the way of a gluten free diet to see if it helped as I was refused help from our family doc as well as a gastroenterologist. My daughters and I stopped getting canker sores, migraine headaches, bloating, cramps, diarrhea and blisters within a week of going gf. The blisters I had for over a decade were gone as well. They only reappear when I've accidentally glutenated myself…same with my daughters (who now also get blisters if they get gluten). If I had not gone gf myself, I would've never had known because my blood test showed up negative and couldn't convince a doctor to test either since we didn't fit the typical profile. I also do not have Celiac genes, though I get DH, which is only known to happen to Celiacs. I called Enterolab and spoke with their staff. The doctors there are trying to get more genes to be included in the Celiac spectrum, as they have had many other patients ask why they are just 'gluten sensitive' by their gene testing yet have DH as well. I believe testing can only do so much. There are many that do not test positive that should (like myself, who had symptoms for over a decade but not enough antibodies to test positive)and others that cannot get a doctor to test them because they don't fit the 'classic' profile. Many doctors do not know ALL the symptoms and that a good majority of Celiacs are not wasting away and are actually overweight. Some are given endoscopies but the doctor only checks one part of the intestine and the damage is all the way at the other end, so they falsely say they are not Celiac. It's things like this that make it difficult for patients and doctors alike. Sometimes, the only recourse for a patient is to go gluten free on their own to find out. Doctors have since asked me to go on a 'gluten challenge' to confirm my diagnosis. However, if my antibody levels couldn't rise high enough after a decade w/Celiac symptoms they surely wouldn't rise high enough on a 6 month gluten challenge. All it would do is make me miserable for the sake of them writing down a confirmation, of what I already know, for their own records. That is to satisfy them alone, not me. I have had my IgA levels tested since going gf and it is down to a 3 right now…after almost three years of being gluten free. I have had to supplement many vitamins/minerals as well (D, B, Calcium, etc) since I was very deficient in them. Testing can do a lot…IF you can find a doctor willing to do it and do it correctly…looking at ALL the symptoms not just bloodwork and endoscopies to diagnose patients. Alone, some of these tests are unreliable at best. However, taken together (tests AND symptoms) a lot can be done to help Celiac patients.
Heather,
Thank you so much for your comment. Your past experience with unaware medical professionals sounds frustrating and unfortunately I have heard many sad stories like this. If you had not advocated for yourself (and your children), you may still be suffering and potientially be at a higher risk for complications. I understand your concerns and value the story you shared.
It sounds like a skin biopsy (for DH), several small intestinal biopsies (at least 6), and a full panel of blood work may have been helpful for you and your children’s diagnosis. There is a podcast available at my blog that discusses all of the problems that can occur with testing (and why). The doctor’s lack of awareness definitely made that difficult for you. I’m sorry to hear that you experienced so many problems. It’s sad because a diagnosis can open the door for the doctor to make other referrals to a registered dietitian, bone density tests, other blood tests, yearly follow-up with a gastroenterologist, etc. These referrals can help prevent complications. Perhaps discuss this with your doctor. As well, there are celiac clinics available (check online) that that have doctors that may be able to guide you. Your story highlights why approximately 97% of those with celiac disease remain undiagnosed.
Your main concern, the possibility of an existing gluten sensitivity even when celiac tests are negative is valid. As mentioned above, I have discussed this problem in a podcast, http://celiacnurse.com/podcast-2-analysis-of-diagnostic-tests-for-celiac-disease-and-my-daughters-story/. Also, I have mentioned this possibility at the end of every post in my 12 Part Series about celiac disease and gluten intolerance. It is a very important consideration to keep in mind while receiving the testing. It is also important to have a doctor who understands gluten intolerance. My doctor didn’t know very much, but she was willing to learn and now I think she is quite knowledgeable. If she wasn’t open minded, then I would have switched doctors. I understand that in certain countries this may not be possible (I’m not sure where you live) and I’m sure that could be very frustrating. We have a long way to go with increasing this knowledge. Celiac disease is only one form of gluten intolerance. This sensitivity can present with so many different symptoms that can affect almost every physiological system in the body. If doctors and nurses are going to effectively practice and give preventative healthcare, then they must be knowledgeable about celiac disease, the full spectrum of gluten intolerance and food sensitivities. Many healthcare dollars and lives could be saved. Others, could benefit by experiencing an increased quality of life.
Thank you very much for your comment,
Shelly
Note: I still always recommend that everyone should review everything on this blog with a medical doctor before they make any changes:) Hopefully, each person will have a doctor who is knowledgeable about this topic and can have a meaningful conversation with them. Over time, knowledge levels should improve as there are doctors out there advocating for this change.