My Search for Answers: An Update on my Health
It’s been a while since I wrote a post about my health status and primarily it’s been because I feel in limbo. You might remember that I attended the International Celiac Disease Symposium in September hosted by the University of Chicago Celiac Disease Center. During some of the sessions, I realized my diagnosis of celiac disease wasn’t as conclusive as the doctors were suggesting nor did I have the correct tests done when I was diagnosed in January 2012. I left there on a mission. What is really going on with me?
I sought a second opinion from a gastrointestinal doctor recommended by other celiac disease folks in Columbus, Ohio. I knew time was of the essence because we were scheduled to move out-of-state mid-October. Dr. Salt reviewed all of my previous tests and said he wasn’t sure I had celiac disease. My tests were out dated and inconclusive. He believed I may have Chron’s disease. He also felt my thyroid and felt lots of nodules and said I needed to follow-up with an endocrinologist once I got to Virginia.
My upper and lower scopes were scheduled and the doctor performing the tests had some choice words for the doctor that previously diagnosed me. It wasn’t encouraging. On a wonderful and positive note, my intestines looked great! But, I’ve been strict about living gluten-free for 2 years now, so likely any damage would have healed during this time. It made me feel better though knowing my innards are looking healthy.
Dr. Salt ordered a small intestinal bacterial overgrowth hydrogen test, which was a piece of cake. The most difficult thing about the test is fasting and the cost. Insurance didn’t cover it. His office called me 2 days before we moved out-of-state to say I did test positive for SIBO. I needed to follow-up with a gastrointestinal doctor in Virginia. I took it upon myself to go on a gluten challenge. There was no way to get an accurate diagnosis and testing if I was gluten-free. Which leaves me to a reminder to all of you reading this, please don’t stop eating gluten until you’ve had all of your testing completed! I’ve been eating gluten once a day for the last 8 weeks to confirm my celiac diagnosis. Doubling down on probiotics has helped with the stomach aches but I can tell you my joints hate me, my pants don’t fit anymore, my migraines are occurring more frequently, my joints are tingly and almost feel numb, I’m sleeping all the time and I’m feeling more sad/moody/anxious than usual (some would call this “brain fog”). I wouldn’t recommend doing this on your own but I’m stubborn and on a laser focused mission to find answers. I do know at least that gluten affects me regardless if I am confirmed with celiac disease or they tell me I have non-celiac gluten sensitivity. I don’t care, I know how I feel now with and without it. Without gluten is the answer.
Once we moved to Virginia, we transitioned to new health insurance which took about 2 weeks to finally get that situated and then I’ve been trying to get doctor’s appointments here. I did get my thyroid ultra sound which is positive for Hashimoto’s but they also found a small lump/cyst which I will now need to follow-up with a surgeon for a biopsy.
I’ve been to a OBGYN here to get established as a patient to help me with my endometriosis. I’ve been to a general practitioner to help me get whatever is going on with my body figured out and to follow me through all my treatments. I’ve been to an endocrinologist who I was very unhappy with when he told me to investigate bariatric methods for weight loss and suggested I go on a 500-600 calorie diet all while explaining he has at least 3 patients a day with the exact same symptoms as I do but he has no answers!! What the hell? Very encouraging. (sarcasm noted)
My new primary care physician was great. I went in there will all my medical records, test results and my own written bullet point summary of my health situation. She confirmed that I do have both of the celiac genes, we discussed me feeling better on a gluten-free diet and now that I’ve been eating gluten she ordered the correct and most updated celiac blood tests. She also ordered tests for arthritis, thyroid problems and some deficiencies.
During the celiac disease symposium, I learned the following things about properly diagnosis celiac disease:
The 4 out of 5 Signs Rule for having celiac disease – you should have 4 of 5 of these done in order to diagnosed celiac disease:
1. Presence of signs and/or symptoms compatible with celiac disease
2. Positive serology testing (TTG +/- EMA)
3. Compatible HLA genes (DQ2 e/0 DQ8 positive)
4. Positive internal biopsy with enteropathy (damage) typical of celiac disease
5. Resolution of symptoms with a strict compliance with a gluten-free diet
Well, now I know I have #1, #3 and #5 but #4 was normal and #2 came back normal after eating gluten again. She also did extensive testing for the thyroid problems (only after I did all my research online to make sure I got the exact tests needed for proper diagnosis). Those results haven’t come back yet.
So what does this mean?
- I still need to follow-up with a gastrointestinal doctor here in Virginia and have another colonoscopy to see if I have any damage to my intestines.
- I need to follow-up with a new endocrinologist about my thyroid and the biopsy.
- I might have non-celiac gluten sensitivity and that’s okay. After this trial period I know living gluten-free for the rest of my life is the only option for my health.
- I’m dedicated to living a gluten-free lifestyle and supporting and advocating for all of us (regardless of your reason for living a gluten-free life!)
- I’m going to continue to search for medical answers and share my story with all of you to help you too!
- I’ve learned that nothing is ever cut and dry with auto-immune diseases.
- And finally, but maybe most important, I feel completely betrayed by my other doctor. I trusted him. I thought he knew what he was doing and finally found my answers. I am angry all over again.
The National Foundation for Celiac Awareness has an entire section on their website covering non-celiac gluten sensitivity. In reading it for research on this blog post, I know notice that I have every single one of those symptoms for NCGS. Look at what they say directly from their website:
What are the symptoms of non-celiac gluten sensitivity?
Non-celiac gluten sensitivity shares many symptoms with celiac disease. However, according to a collaborative report published by Sapone et al. (2012), individuals with non-celiac gluten sensitivity have a prevalence of extraintestinal or non-GI symptoms, such as headache, “foggy mind,” joint pain, and numbness in the legs, arms or fingers. Symptoms typically appear hours or days after gluten has been ingested, a response typical for innate immune conditions like non-celiac gluten sensitivity.
If the symptoms are so similar, how is it different from celiac disease?
Non-celiac gluten sensitivity has been clinically recognized as less severe than celiac disease. It is not accompanied by “the enteropathy, elevations in tissue-transglutaminase, endomysium or deamidated gliadin antibodies, and increased mucosal permeability that are characteristic of celiac disease” (Ludvigsson et al, 2012). In other words, individuals with non-celiac gluten sensitivity would not test positive for celiac disease based on blood testing, nor do they have the same type of intestinal damage found in individuals with celiac disease. Some individuals may experience minimal intestinal damage, and this goes away with a gluten-free diet.
Research has also shown that non-celiac gluten sensitivity does not result in the increased intestinal permeability that is characteristic of celiac disease. Increased intestinal permeability permits toxins, bacteria and undigested food proteins to seep through the GI barrier and into the bloodstream, and research suggests that it is an early biological change that comes before the onset of several autoimmune diseases.
What I really want you to take away from this blog post and the reason I share the detailed account of my journey with this is you know are armed with extra information on your mission for answers. Hopefully, some of you reading my blog will realize you have similar symptoms as me or you have more information than before to get accurate testing and become and advocate for your own health. No one knows your body like you and it’s essential to put that information together with the medical world in order to get correct diagnoses!
Of course, I will keep posting about my journey and I would love to hear any of your stories. Any of you going through the same thing? Have you been through the same thing?
Many of my readers not only learn from me but from your comments as well, please feel free to share your information in the comments section below.
Your TMI celiac and gluten-free advocate