JUST DIAGNOSED WITH NON-CELIAC GLUTEN SENSITIVITY - AN OVERVIEW
Following is an overview of what Gluten Intolerance (also known as non-celiac gluten sensitivity) 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 better off you will be.
Gluten Intolerance
Gluten intolerance is a medical condition for which there is currently no cure. Unlike celiac disease:
With gluten intolerance, eating gluten does not cause damage to your small intestine. It “just” causes gastrointestinal and related symptoms that can go on for weeks or even months in some cases.
A person with gluten intolerance can usually eat a small amount of gluten now and again without consequence. Cross contamination is from a small amount of gluten is also generally not a problem.
A gluten intolerance is a long-term problem that will not be grown out of.
Treatment
Luckily, there is a time-tested, simple to understand, treatment that is totally within your control 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 are getting through other foods the nutrients usually found in wheat. It is recommended that you take a multivitamin since gluten-free foods are not fortified with B vitamins and folic acid at this time. You may gain or lose weight initially as you shift to different foods with more or less calories.
New Normal
As a practical matter, with a diagnosis you have entered an all-encompassing "New Normal" to adapt to in a wide variety of situations.
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 do the same – 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.
The sooner you start a gluten-free lifestyle, the sooner you lower the risk of developing an associated condition.
Research shows that people who have individual instruction and social support are more likely to stick to the gluten-free diet.
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.
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. 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 advisable to ALWAYS at least carry gluten-free snacks.
And yes. It is likely that once in a while, no matter how careful you are, that you will be glutened - and suffer the consequences.
If New Normal sounds difficult, it can be. It’s 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.”
Living 100% gluten-free gets easier over time — it becomes a way of life.
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.
● As a general matter, information and resources relating to living with celiac disease also applies to you – the major difference being that you can generally cope with a small amount of gluten periodically.
● 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 with celiac disease or gluten intolerance living in their own new normal – locally, regionally, and throughout the United States. Charlie’s Table Oasis helps you easily connect to people and groups of people like you for support, individualized guidance or just to shoot the breeze with someone in a similar situation.
Now is the time to start. To make the start easier and most effective, read: Adjusting To Living A Gluten-Free Lifestyle.
To learn how to find a support group, click here.
When Obtaining Health Insurance
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 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 gluten intolerance 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.
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.