With each year that passes, I discover more and more about celiac disease ― some things that are hard to believe, and others that make complete sense, and leave me asking how I didn’t realize it before.
Celiac disease was discovered in the early 1900s, which means it was discovered not long ago. You can assume there is plenty of work that needs to be done, from food options and restaurants to alleviating symptoms, spreading awareness, cures, and related diseases ― this is just the start.
As this is just the start for celiac disease patients, it is important to research and educate yourself on celiac disease because surely, doctors aren’t doing a good enough job at it. I can’t speak for all doctors, but have yet to speak to a celiac disease patient that had an efficient, helpful, and informative celiac disease specialist, doctor, or gastroenterologist.
As a celiac disease patient who was diagnosed with celiac disease in 2016, and has dedicated a large amount of my time to learning more about the disease, I can say I was not given the information I needed upon diagnosis. In fact, I was given very little information and it went as far as, “Just avoid gluten.” We all know there is so much more to celiac disease than just avoiding gluten.
Here are things you may not know about celiac disease that can benefit you and your overall health.
Everyone is Different
Yes, all celiac disease patients are different than one another when it comes to their symptoms, reactions, and needs. Your symptoms may be completely different from other celiac disease patients and you may respond differently to certain foods. You will meet celiac disease patients who have experienced different reactions and have different needs.
For example, some celiac disease patients experience excruciating stomach pains while others don’t. Some get rashes after ingesting gluten while others don’t. Some can tolerate eating at any restaurant while others need to be particularly cautious of cross-contact. It ultimately depends on the individual and it is important to listen to your own body and its needs.
Avoiding Cross-Contact is Important
One thing doctors and nutritionists do not emphasize enough is the importance of cross-contact. Cross-contact is when your gluten free food comes in contact with a surface or other food that is not gluten free. When this occurs, your gluten free food is no longer considered to be “gluten free” and it makes it unsafe for celiacs to eat. The tricky part about cross-contact is it can take only one crumb to feel sick or affect your digestive tract and that crumb can be microscopic.
For this reason, it is important to clean the cooking area, its surfaces, utensils, pots, and pans prior to cooking or preparing a gluten free meal. Furthermore, if a restaurant is unaware of cross-contact then it is likely it is not safe for you to eat at, even if it has gluten free options. They may be preparing your gluten free pizza on top of a surface full of wheat flour.
Alternatively, some restaurants go the extra mile and dedicate one area for gluten free food, and sometimes even have a separate kitchen. A majority of the time you will find they will do their absolute best to avoid cross-contact but cannot guarantee it.
You Can Shop at (almost) Any Major Grocery Store
If you’re like me, you went to trader joes after being diagnosed with celiac disease and found that not all of their products are gluten free like you thought they were. Though celiac disease is a complicated disease, you do not need to overcomplicate things. There are gluten free options in almost every major grocery store. And fortunately, a lot of the major stores now have a gluten free section.
With Celiac Disease Comes Other Diseases and Diagnoses
There are other autoimmune disorders, conditions, and diagnoses that are often associated with celiac disease. Celiac disease patients are at a higher risk for these diseases, conditions, and diagnoses.
For example, if you have celiac disease it is highly likely that you also have IBS and other food intolerances/allergies. Other diseases and diagnoses that are often associated with celiac disease are:
- Arthritis
- Crohn’s Disease
- Type 1 Diabetes
- Ulcerative Colitis
- Autoimmune Hepatitis
- Psoriasis
- Small Intestinal Adenocarcinoma (Cancer)
See a complete list of other diseases and diagnoses that are often associated with celiac disease here.
Gluten Hides in Places Where You Least Expect It
Just when you think you have learned about all the products that contain gluten, you get hit with the surprising news that your favorite dressing or sauce has gluten in it. Gluten is not always labeled as “wheat, rye, barley” on food products and it is best to research the product if you are unsure. Here is a list of food products that have gluten free options, but are not always gluten free.
- Flavored nuts
- Soy sauce
- Imitation crab
- Salad dressing
- BBQ sauce
- Marinated meats
- Relish
- Pickles
Celiac Disease Patients Should Get Tested Every 3-5 Years
It is important to monitor your celiac disease symptoms to ensure you are not damaging your small intestine even more so. You may be accidentally ingesting gluten without experiencing any symptoms which can still be internally damaging. In order to check and monitor celiac disease, doctors recommend an endoscopy and blood test every 3-5 years, unless symptoms are ongoing. If you are still experiencing symptoms doctors will want to order blood tests and perform more tests sooner.
If You Think You Have Celiac Disease, You Need to Eat Gluten for An Accurate Test
If you are experiencing celiac disease symptoms and suspect you have celiac disease, you must eat (or continue to eat) gluten prior to testing. Doctors will most likely perform an endoscopy to check if there is inflammation or damage in your small intestine, and also order blood tests to confirm whether or not you have celiac disease.
If you discontinue eating gluten, the endoscopy will still show inflammation or damage because it can take years for it to heal. However, the blood test to confirm the cause of the inflammation will not be accurate and you need to eat gluten in order for your celiac disease blood test results to detect the disease.
Following a Gluten Free Diet May not Resolve Celiac Symptoms You are Experiencing
As previously mentioned, celiac disease may trigger several other autoimmune disorders and diagnoses. Furthermore, as celiac disease directly affects the gut, after transitioning to a gluten free diet, your body will need some time to adjust and heal ― and even then, it still may be more sensitive. You may still have lingering symptoms and it could be because of another health condition or food allergy.
Additionally, many celiac disease patients do not respond to the gluten free diet because of the damage gluten has caused within their body prior to being diagnosed. The damage has either gone too far and requires more of an extensive treatment, or the body needs at least 1 year to heal before symptoms gradually diminish.
Recap
- Everyone celiac disease patient is different.
- It is important to avoid cross-contact as much as possible.
- There are gluten free food products at almost every major grocery store.
- Celiac disease is often associated with other diseases, conditions, and diagnoses.
- Gluten hides in places where you least expect it.
- Celiac disease patients should get tested every 3-5 years to monitor the disease.
- You need to be eating gluten prior to getting tested for celiac disease.
- You can still experience celiac disease symptoms after transitioning to a gluten free diet.
