Are you having mild flu-like symptoms that persist for months leaving you too tired to do what you love? Have you rapidly lost or gained weight without changing your diet? Do you have persistent gut pain, diarrhea, or constipation that you’ve “just learned to live with”?
If you answered ‘yes’ to one or more of these questions, it sounds like you may be one of of the more than 18 million Americans who have a gluten problem.
Before you can go about getting better, you need to find out what is causing your negative reaction to gluten… if gluten is in fact your issue. There are a number of steps you can take to get a diagnosis quickly with minimal chances of scary misdiagnoses and headaches.
I learned the hard way.
My Personal Gluten Problem
I had no idea what was wrong with me before I was diagnosed with celiac disease, and – frankly – neither did the doctor that I was seeing at the time.
Things began to seem a little off when I realized I had been experiencing extreme fatigue for months. I’m normally a very active person, so when days would go by where I couldn’t get out of bed – causing me to miss Scouting events and other quality time with my kids – I knew there was something wrong.
When I brought it up with my doctor, he commented that I must just be tired from taking care of the children. Right.
After passing out in Radio City Hall while on a trip with my mother, I decided it was time for a second opinion. My chronic fatigue, dizzy spells and fainting seemed like more than just “being tired because of the kids”.
It was when I collected my paperwork from my first doctor that I noticed it. There it was. In my GI papers from two years prior, the specialist had noted the strong possibility that I had celiac disease.
After 4 years of feeling progressively sicker, the diagnosis was a relief. I wasn’t a hypochondriac. My symptoms weren’t in my head. I have celiac disease, and since switching to a gluten-free diet I am feeling 100% better.
What You Can Do
Find a Support Group
Perusing blogs and journal articles is an excellent way to gather general information, but eventually you’re going to find a group of people (either online or in person) to answer your specific questions and share their own stories.
Even if you’re not positive that your problem is related to gluten, it doesn’t hurt to get together with a group of individuals who have been through the experience of being diagnosed. Their insights into your symptoms, or even recommendations about what doctor to visit and what to do in the meantime are incredibly valuable.
To find a gluten free support group in your area, check out our list here. If you’re unable to find a group close to you, check out these online gluten free forums and communities.
Noticing Your Symptoms
Depending on the severity of your symptoms, you may want to take a week or two to observe and record what you eat, and how your body reacts. Noting the food you ate, how much of it you ate, when you ate it, and how you felt afterwards will help your doctor notice patterns that he or she may otherwise overlook. The more information you can provide your medical professional, the more easy it is to make an accurate diagnosis.
Even if your symptoms are severe, and you think it’s best to go see a doctor right away, taking the time to look back over your week and record the details of what you’ve been eating and how your food has been affecting you is a worthwhile exercise.
Remember, the faster you can get an accurate diagnosis, the more quickly you can heal. The longer gluten intolerance goes undiagnosed, the more severe the consequences on your overall health will be. Fast and accurate diagnosis depend on your persistence and willingness to provide accurate personal information.
Talking to Your Doctor
First, you’ll want to decide which kind of medical professional you want to visit. Many people upon suspecting they have a gluten issue decide to visit naturopaths or other non-traditional establishments hoping to receive a more sympathetic care person.
While it is true that many non-traditional clinics tend to be more aware of and open to gluten free lifestyle, if you feel you may have celiac disease or a more serious problem you should go to an MD directly for more aggressive testing.
I also recommend supplementing your doctors visits with trips to a nutritionist. Like some naturopaths, nutritionists are more open to the possibility of a food allergy than many doctors are, and can act as an advocate for you if you think that’s your problem.
Next, you want to be prepared for your doctors visit. In addition to your food journal, there are several items you want to prepare for your visit:
- Good Questions - Come ready with specific questions for your doctor about the possible causes of your symptoms, the available tests for these causes, etc. Mayo Clinic has an excellent list of questions to ask your doctor if you think you have celiac disease.
- Supportive Advocate - Asking a family member, partner, or close friend to come take notes and help ask questions is a great way to make sure you get the most out of your doctors visit. Having someone on your side to help explain your symptoms from a non-emotional, third person perspective will help you articulate your issues more clearly.
- Medical History - You’ll want to look back over your personal medical history to see if you’ve had issues with gluten or other foods in the past that have recently worsened, or whether your symptoms are a relatively new development. Additionally, take the time to ask around in your family to see if anyone has experienced similar symptoms. It is possible that celiac disease or gluten sensitivity run in the family and you don’t even realize it.
Remember, if you think you have a serious problem with gluten, don’t wait for your doctor to suggest you get tested.
Taking Care of Yourself
While awaiting your diagnosis, you want to be very kind to your body. Let your friends and family know what you’re going through and ask for their support. If you’re feeling poorly and need to take a rest, don’t feel guilty letting your partner pick up the slack around the house or in the kitchen. Take a couple of days off work if you are able, and manage your symptoms to the best of your ability.
Some studies suggest that probiotics can help keep gluten-related inflammation down and combat the nastier effects of a gluten issue. For more information on the importance of probiotics and specific recommendations, check out these posts:
- Probiotics and Gluten Sensitivity/Celiac Disease at The Attuned Food Daily Digest
- What Every Celiac Should Know: Probiotics at Gluten Free Chops
- Probiotics and the Gluten Free Diet at Gluten Free Works
Not knowing what is wrong with your body is terrifying. The best and fastest way to empower yourself is to do a quick round of research, and get a diagnosis that makes sense to you. Whether you end up having celiac disease or another issue, you’ve successfully taken the first step to getting better just by reading this article.
Note: I am not a doctor, and this should not be misconstrued as professional medical advice. For more information, please read our disclaimer.