Why Provider Relationship is Important for Celiac Disease

Celiac disease has a broad spectrum of symptoms and each case varies, for instance, my son was constipated while others with Celiac disease can have diarrhea. Countless Celiac’s are misdiagnosed with other issues such as irritable bowel syndrome or chronic constipation. Celiac disease can also trick the body into thinking it is lactose intolerant due to the damage to the villi caused by eating gluten. The varying symptoms are why it can be difficult to diagnose Celiac disease correctly.

The health care providers I was taking my son to were not addressing my concerns which led me to keep a food journal. It seemed strange my child was suddenly throwing up regularly had severe constipation, vomiting, lethargy, weight loss, stomach pains, bloating and fatigue. Two different doctors completely dismissed my concerns, chalking it up to constipation that would ultimately disappear. I was told he could take Miralax for years by one doctor and another actually told me it was not in my child’s best interest to do further testing.

I knew in my heart there was something seriously wrong with my baby. Over the course of three months, I had finally found a doctor that agreed to run tests. It seemed like forever, but was considerably fast, most people with Celiac disease do not get a correct diagnosis for several years. Not only did my child have Celiac disease, he was anemic, was suffering from malabsorption, and was failing to thrive. It only took two days of being on a gluten-free diet for my son to be his wacky, rambunctious self once more.   

I share the story of my son to encourage you to never give up. It is so important to be an advocate for your health and the health of your loved ones, especially if your concerns are not being addressed. Undiagnosed Celiac disease can lead to other diseases and autoimmune disorders like thyroid disease, Hashimoto’s disease and type I diabetes, to name a few. If you are not obtaining the testing and answers you are looking for, do not be afraid to seek a second opinion. It is crucial to have a health care provider you are comfortable with and able to ask any question no matter how embarrassing or seemingly silly they may seem. In my case, my mother’s intuition was right. Who knows yourself or your children better than you? Nobody!

My recommendations are to work with your health care provider as a team, build trust, request and keep a copy of all medical records, write down any questions you may have and do not be afraid to ask them. This will keep you organized and ensure productive appointments, especially if you have to see multiple health care providers and specialists. Keep a journal and write down symptoms, behaviors and anything out of the ordinary−even if you think it may not pertain to the issue at hand. Ultimately, go with your gut! If you suspect something is wrong, it’s ok not to take no for an answer.

Look for the final blog in the Celiac Disease series about tips, tricks, and tools to help manage Celiac disease.

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