Celiac disease comes with numerous symptoms that you may experience. Examples of symptoms as detailed by the Mayo Clinic are: fatigue, diarrhea, bloating, gas, nausea, constipation, weight loss, anemia (iron deficiency), osteoporosis, rashes, mouth ulcers, headaches, joint pain, and some neurologic impairments. 

These symptoms are intrusive, interfering with daily life to the point where it is obvious that there is a problem. The Celiac Disease Foundation provides a symptom assessment tool that can help you navigate whether or not you should be tested for celiac disease. They also provide a physician finder tool to assist those who do need medical help. 

The Celiac Disease Foundation recommends that all children age 3 or under and adults with symptoms get tested by their doctor. However, regardless of symptomatology, those with a first-degree relative with a celiac disease diagnosis or those who have any form of an autoimmune or neurological disorder should also be tested. 

Getting Tested for Celiac Disease

Screening or testing for celiac disease involves looking at a person’s genetics. If the tissue transglutaminase tTG-IgA antibody is detected, which should be in 98% of people who have celiac disease, then the diagnosis will be issued. This is considered to be the standard testing for the disorder. There are other options, including doing a colonoscopy and biopsy. Different doctors may require different tests that vary in cost and levels of intrusiveness. 

Most tests must be performed on someone while they are currently experiencing symptoms. If you have been eating gluten free for a while, a blood test will not be a viable way to confirm your diagnosis because the enzyme they look for in the blood test will not exist unless you are eating gluten. 

Living with Celiac– Stick to a Completely Gluten Free Diet 

Currently, the only known treatment for celiac disease is a gluten-free diet. There are little, if any, research studies that have found an overwhelming cure for the condition or things that specifically reduce symptoms directly associated with celiac disease. Cutting out gluten means that most people will be eliminating things such as bread, pasta, flour, or grain alcohol. Switching to a gluten-free diet can be a radical adjustment for some, and it is not impossible, it can take some practice and some time. 

Considering the fact that food has such a large presence in our society, someone new to a gluten-free diet can feel isolated or withdraw from their friends or family. Some things that can be difficult to navigate in the beginning are: the cost of packaged gluten-free foods such as gluten-free bread or pasta, as well as the lack of gluten-free options at restaurants. 

Between being diagnosed with a condition that forces one to adjust their entire diet – most likely eliminating the things they enjoy eating the most – and going through fairly complex testing, can leave you frustrated and exhausted. There are few options for how a person can proceed, except to adjust one’s lifestyle and develop a new sense of normalcy. 

Adjusting After a Diagnosis

These major life adjustments can cause you to begin the five stages of grief: denial, anger, bargaining, depression, and, eventually, acceptance. Everyone moves through each stage differently, sometimes becoming enmeshed and overlapping with each other. There is no right way to grieve; many factors such as environment, access to mental health resources, personality, and having an empathetic support system can influence the grieving process.

The first stage of grief, denial, is a period where one will refuse to acknowledge that they even received a diagnosis. Frustration often arises while they wrestle with the fact that they have been diagnosed with a life-altering condition. In this stage, people often isolate from others or distance themselves from social situations involving food, as mentioned earlier. The more one is willing to think and look at how to deal with the diagnosis, the quicker the denial will go away and will turn into anger. 

Anger, the second stage of grief, can cause a person to enter an even more tumultuous thought process. Here, the person with celiac disease will begin to question why they had to be diagnosed with it. Implementing lifestyle adjustments will cause even more anger, only fueling the fire that is already burning. 

Patterns of anger and frustration will begin to emerge, leading a person to bargain their way into being guilty about their diagnosis; this marks the third stage of the grieving process. Examples of bargaining include regretting not seeking help sooner from a physician or seeking out a second opinion after the initial diagnosis. The harsh reality is that usually, none of these things would have made the outcome any different. It is simply a way of self-blame and guilt, which is a natural reaction to a medical diagnosis, particularly celiac disease. 

After trying to rationalize and bargain with oneself, depression can set in. The fourth stage of the grief process, and often the most sensitive, needs to be taken seriously. The deep sadness and gradual realization of one’s reality that comes with receiving a medical diagnosis can be severe.

Acceptance, the final stage, is perhaps the hardest to reach- and cope with. Although a person will have gone through the first four stages already, this stage marks the ending of what most likely was a long and arduous journey of coming to terms with a diagnosis of celiac disease. 

Similar reactions can be seen in any person who has been diagnosed with a medical ailment, such as mild cognitive impairment or dementia, cancer, or Parkinson’s. Although celiac disease may not be seen as threatening as the aforementioned conditions, it still has a huge impact on a person’s life and should not be taken lightly. 

The great news is that when you begin to accept that this is your way of life, and the new way you will take care of yourself, things will get easier, and it will come more naturally to you. 

If you have been recently diagnosed with celiac disease, be sure to surround yourself with a good support system (both loved ones and a medical team) to help ease the stress that may come along with the new adjustments you will have to make in your life. If you know someone who has been diagnosed and is exhibiting signs of grief, try to be as supportive as possible. 

Chances are, everyone has been through something that they have grieved over therefore making it easier to empathize. Keep in mind that you or the person you know are not alone and there are resources to assist those with celiac disease.  If you are looking for local support, we encourage you to look at Gluten Intolerance Support Groups. There are also a variety of facebook groups, although we do not endorse any specific group. 

If you would like to read more about adjusting to a gluten-free lifestyle, find more support in our resources section, and if you are ready to purchase some gluten-free products, find quality guaranteed gluten free products and mixes in our online store and local shop. 

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