Brandon was 39 years old when he overdosed from opioid drugs. How did he get here, and what did celiac disease have to do with it?
Brandon suffered for years, from a combination of physical and emotional pain. “I’ll never know if [his death] was intentional or unintentional,” said his mother, Charlotte. He was diagnosed with celiac disease in 1992, in his late teens, after close to a decade of symptoms. Compared to today, there was little understanding and awareness of the disease at the time, even in the medical community, so Brandon’s struggles continued post-diagnosis.
“As Brandon went into his late 20s, his celiac symptoms became more severe, but he worked and tried to manage with the diet. Eventually in his 30s he had to go on disability for several years,” his mother said. Facing insurance issues, Brandon was left with little help from the medical community. “His gastroenterologist admitted he was unable to do anything else to help him.” Brandon’s gastroenterologist stated he could no longer treat his celiac disease.
After receiving approval to go to the Celiac Research Center in San Diego, CA, he was diagnosed with a combination of celiac disease, IBS , and fibromyalgia,” and met with a specialist at UCLA. The specialist helped Brandon restructure his diet, and he seemed to have his condition under control.
He was doing well for some time on this plan, and he decided to make the move from California to Oregon for financial reasons. Sadly, it was a move that changed everything for the worse. “Brandon deteriorated within one year. He lost 25 pounds and was unable to eat any food at all,” said Charlotte. What explained this? According to Charlotte, Brandon’s insurance coverage changed; his fibromyalgia medication was no longer covered, and the pain was real.
“Brandon was taking high doses of pain medication for Fibromyalgia, because the pain was so severe, which he was paying for out of pocket to function.” Stomach cramps and body pain affected him on a daily basis. Charlotte, no longer living close by, had no idea how bad things had gotten for her son. “Due to the distance, I was unaware of how far he had deteriorated until it was too late.”
His mother suspects that the combination of Brandon’s problems furthered his inability to eat, and “added starvation to all the pain he was suffering, and I’m afraid he may have suffered the feeling of no hope that his situation would ever change.”
The Whole Picture
Celiac disease was one of numerous issues Brandon faced. While the extent to which his celiac disease specifically led to this outcome can’t be known with certainty, it is important to be aware that there are potential negative aspects to living with a celiac diagnosis.
The Gut-Mind Connection
On top of the physical health-related aspects of celiac disease, also relevant (but often overlooked) are aspects related to mental health and well-being. Living with a chronic disease diagnosis, particularly one which impacts daily food choices and lifestyle, has the potential to negatively impact well-being. Frustrations and mental stress can be caused by the misperceptions others have about the gluten-free diet. Some may think it’s just a lifestyle choice or a fad, and don’t understand that not following the diet can have serious health repercussions. They may think you are a hypochondriac, or that you “just” have a stomachache that is not anything to be so concerned about.
In addition, there is the potential effect which gluten intake can have physiologically on the brain, in some individuals. Over recent years it has been recognized that symptoms of gluten intake can occur in virtually all body systems, including neurological. Research in the area of psychiatric complications related to gluten is limited. However, research does exist which indicates potential connections, both in relation to celiac disease (CD) and non-celiac gluten sensitivity (NCGS). Connections have been reported between gluten and anxiety disorders, attention deficit hyperactivity disorder (ADHD), depressive and mood disorders, and schizophrenia.
The Importance of Support
Brandon was lucky to have the support of his mother during these trying times, and his isolating move to Oregon shows what a difference that can make in one’s life. It could be as simple as someone to call when you are feeling hopeless, a friend to dine with at a gluten-free restaurant, or a local support group filled with others who truly understand what you are going through. It makes sense that having a support system would be beneficial. In addition, numerous celiac experts and published papers agree that celiac patients benefit from the help of a support group. Research also indicates that good patient support is linked to better dietary adherence. So, in addition to having a positive impact on mental and emotional well-being, involvement in a support group can also reduce the risk of long term physical complications. GIG offers support groups all across the country. So that gluten-free kids and teens can get connected early in their diagnosis, GIG’s Generation GF program has groups geared just for them.
In working with these numerous support groups across the U.S. and internationally, there are countless stories of the positive impact surrounding oneself with others experiencing similar things can have. From those living gluten-free who are struggling to pay for medical care to young families with toddlers going through celiac disease diagnosis, everyone’s situation overall is different but they all have something fundamental in common. Support groups are a place of understanding, comradery, and help for all.
Pain and Co-morbidities
Many individuals with celiac disease experience debilitating symptoms when gluten is consumed, which can clearly have an impact on not only physical, but also mental well-being. Even for those who don’t experience immediate or short term symptoms when gluten has been ingested, maintenance of the gluten-free diet is essential for maintaining health and reducing risk of other health issues developing. It is also known that even in well-managed CD, risk of developing additional auto-immune diseases is increased. Some research indicates there may be a higher prevalence of fibromyalgia among individuals who have either celiac disease or non-celiac gluten sensitivity. [It should also be noted that gluten-related disorders (i.e. CD and NCGS) can have many symptoms in common with fibromyalgia.] Any additional physical distress – whether related to short term cross-contamination, or to the occurrence of additional disease – has the potential to impact mental well-being.
Refractory Celiac Disease
While the gluten-free diet is effective for the vast majority of those with celiac disease, some individuals do not recover, despite adhering to a gluten-free diet. This condition is known as refractory celiac disease, and is generally defined as symptoms and intestinal inflammation that persist after six to 12 months on a strict gluten-free diet. The exact prevalence of this condition is unknown, but it is thought to be rare. Additional medical follow-up is called for in cases of refractory CD, and additional testing and medications may be prescribed.
Insurance and Availability of Care Issues
It is ideal to have a personal physician and healthcare team you feel confident in. If circumstances are such that individualized care is disrupted, be sure that any general guidance or information you use comes from legitimate, reputable sources, such as GIG. Numerous educational bulletins can be found here, including Getting Started on a Gluten-Free Diet and Gluten-Free Diet and Drug Instruction. Of course, to maximize your health, try to maintain a balanced diet of whole foods and certified gluten-free products to prevent gluten exposure.
While there is no denying that these topics are heavy, it is important to keep in mind that every individual’s situation is different. Celiac is a chronic disease and has a major impact on one’s life, but the upside is that it can be treated with diet rather than medication. It is also important to note that celiac disease is an autoimmune disease—having one can increase one’s risk of having another autoimmune disease. Obtain regular medical follow-up to the best of your ability, and develop a support network of others who are living gluten-free. If there is not a GIG support group in your area, you can always reach out to via our support group page here for more information.
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