JUST DIAGNOSED WITH CELIAC DISEASE – AN OVERVIEW
Following is an overview of what Celiac Disease is, current treatment, the new normal that occurs once a person stops ingesting gluten, how to eat healthy, the need for emotional support and how to get it, health insurance, other related subjects and practical tips. The sooner you start a gluten-free lifestyle, the sooner you lower the risk of developing an associated condition.
Celiac Disease
Celiac Disease is an autoimmune disease for which there is currently no cure. With celiac disease, swallowing even the smallest amount of gluten causes damage to the body. If you have celiac disease, and eat gluten, even a small amount, you will be doing long lasting damage to your digestive system - and setting yourself up for related health conditions.
Even if there are no physical symptoms, possible serious health consequences include osteoporosis (and resulting bone fractures), nutritional deficiencies such as iron deficiency, anemia, and cancer.
For in-depth information about the health condition, see: Celiac disease
Treatment
Luckily, except for the small percentage of people who have the rare condition known as refractory celiac disease, there is a time-tested treatment that does not require any medication and that works with or without health insurance: DO NOT SWALLOW GLUTEN.
Not ingesting gluten is a diet with no side effects and no complications so long as you get the nutrients usually found in wheat. It is generally recommended that you take a multivitamin daily since gluten-free foods are not fortified with B vitamins and folic acid at this time.
It would be wonderful to tell you that as soon as you stop ingesting gluten, you will experience immediate relief. For some people that is actually the case. Others take time. There are even some people that feel better initially, then have a recurrence of symptoms because of additional food intolerances they didn’t know they had. At least there’s the good news that you finally understand what is happening in your body.
Once on a gluten-free diet:
● You may initially gain or lose weight as you shift to different foods with more or less calories.
● If celiac disease goes into remission, life expectancy becomes the same as a person without celiac disease.
New Normal
As a practical matter, with Celiac Disease, you enter into a “New Normal" in a variety of situations as you adapt to a life without gluten. New Normal includes how you shop for food, where things are in your kitchen, how you cook, how you deal with eating outside your home, and how you travel. It is also likely to affect your relationships with family and friends, your health care team, and even your work.
If you are a parent of a child who has difficulty with gluten, there will be a whole new set of challenges at home and at school. If you live with someone or in a household, the question will become whether you will be the only person eating gluten-free or whether everyone will also eat gluten-free – at least while at home.
Utilizing accurate information and understanding how to navigate through New Normal helps pave the way, ease anxiety of the unknown, minimize unpleasant surprises and ultimately helps to find peace.
Research shows that people who have individual instruction and social support are more likely to stick to the gluten-free diet.
In New Normal, awareness has to start when you first wake up in the morning – continue through the day – and be on your mind when you take a last bit of food or drink before going to bed.
It is critical to plan ahead ALL the time. Consider establishing routines that enable you to get through the day, tailoring your expectations in ways that minimize anxiety and unpleasant surprises. Spontaneity, where you can do things on the spur of the moment, will come in smaller doses than previously, but it will return.
It is also advisable to ALWAYS carry gluten-free snacks with you.
Please keep in mind that no matter how careful you are, it is likely that you will be glutened once in a while - and suffer the consequences.
If New Normal sounds difficult, it can be. It is 24/7 - with no breaks - not for weekends - and not for holidays. Yet some people literally refer to a diagnosis as a blessing. To quote David H.: “The year I was diagnosed was the best year of my life. I got my life back on track and could start living again.”
To quote Jane Brody: “I now fully understand that a successful life is not necessarily the perfect one I had imagined it would be as I got older. Rather, it’s a life that rolls with the punches, adapts to changing circumstances, and makes the best of the here and now. …. I must learn to say ‘no’ when I know in my heart that ‘yes’ would be a miserable mistake.”
Ron P: “We would all be happier if we focused more on what is physically, emotionally and socially possible now instead of lamenting what once was and may never be again.”
Living 100% gluten-free gets easier over time — it becomes a way of life -- and thanks to vetted guides such as ours, accurate information is available.
Being Healthy
Consider using a diagnosis as a wake-up call to focus your new normal on maximizing your health.
● Consult with a registered dietitian to check for existing deficiencies in your diet and to learn about a healthy gluten-free diet that suits your food sensibilities. A healthy diet can help overcome likely internal damage from years of eating gluten.
● Just because a food is gluten-free, does not mean it is healthy. Wheat in food products has properties that are difficult to reproduce when using a substitute grain or starch. Manufacturers often add other ingredients to make the product seem similar to wheat-containing products. This often increases the calorie, fat and carbohydrate content of these gluten-free foods.
● If you don’t have health insurance, and don’t have the money to pay for a visit, check with the closest celiac center to find out if they have a free meet-with-a dietitian day or perhaps lectures you can attend in person or virtually on a computer.
● Get proper treatment for any other conditions which may have resulted from your disease. For instance, nutrient deficiency, anemia or osteoporosis.
● As a general rule, follow-up visits with your physician should occur at 3 – 6 months and 12 months after initial diagnosis – and annually thereafter
● Get adequate rest.
● Work on keeping a positive attitude. The glass may be half empty, but it is also half full.
Caution
If a question comes up about whether it is safe to eat a particular food, and you are not sure of the answer – until you can research it with a credible source -- ALWAYS err on the side of caution. A mistake can cause literally months of misery.
It helps to keep in mind risk/reward – what are you risking and what is the potential reward? When it comes to gluten the risk is seldom worth it – no matter how shiny an object a particular food may look at the moment.
This cannot be repeated often enough: ALWAYS err on the side of caution.
● When you do research, please be sure that you only get information from reliable sources – sources such as ours where all information is vetted by professionals before being posted.
● Please do not believe everything you read on the internet. There is a great deal of misinformation on the web.
Support
There is no reason to feel alone or without help.
There is a community of people living in their own new normal – locally, regionally, and throughout the United States. Our non-profit foundation, Charlie’s Table Oasis, helps you connect easily for support to people and groups of people like you, for individualized guidance or just to shoot the breeze with someone in a similar situation. Our article about Support helps you find support groups.
Now is the time to start. To make the start easier and most effective, read: Adjusting To Living A Gluten-Free Lifestyle.
Health Insurance: Obtaining and Maximizing Use
If you have a choice when obtaining health insurance, in addition to whatever else you may consider:
Look at co-pays for specialists. It is not unusual for a person with celiac disease to have additional conditions requiring medical attention. Check to see if there are additional co-pays or deductibles if you see multiple specialists.
Check for coverage that includes the services of registered dietitians or other nutritional experts.
Click on the link for information about how to obtain health insurance.
Once you have health insurance, see how to maximize use of health insurance.
For More Practical Information
For practical information about adjusting to a gluten-free lifestyle, see our article of the same name. For a list of other subjects that may be of interest, see our Table of Contents.
Please keep in mind that the subjects we cover and our content are expected to evolve over time as community members participate. Consider returning from time-to-time to see if there is a new subject or new information of interest to you – or perhaps to add your own.
A Final Thought
People who live with celiac disease for a long time indicate that it seldom gets easy – but it does get easier.
TIPS
There are a few over-the-counter medications that are sold as “gluten cutter” pills, including one actually named “Gluten Cutter – Gluten Digestive Formula.” They are supposed to improve your body’s gluten digestion and assist in breaking down wheat. These claims have not been medically proven. In fact, ingesting gluten could cause an autoimmune response. These pills should be avoided pending further research. There is no medication that is currently approved and available in the United States.
To help bring your family and close friends up to speed about your condition, what you need to do to stay safe and what they can do to help, consider suggesting they read this Newly Diagnosed guide, our guide about Family and Friends from their point of view and to look over our Table of Contents so they are aware of this source of information if and when the need arises. Some people use the documentary Celiac Project as an introduction for friends and family and to encourage close relatives to get tested.