So you've been diagnosed with Celiac Disease and have started to navigate what you can and can't eat. Every day you learn a little bit more and feel a bit more secure in your health. But what are the next steps in your medical care? I want to cover some of these topics, but I also want to make a disclaimer. I'm not a doctor, nurse or certified medical professional. I do however have plenty of contacts who are, and I'll be sharing knowledge from trustworthy sources.
Follow-Up Medical Care
Over 120 years ago, Dr. Samuel Gee was the first to realize that diet played a role in the healing of those with Celiac Disease. The fact that gluten ingestion is the main cause of damage to the intestines is widely accepted as fact. What isn't standard is the guidelines for follow-up care. Doctors from ESPGHAN (including Dr. Ivor Hill and Dr. Guandalini) have recently written up research and guidelines in the Journal of Pediatric Gastroenterology and Nutrition. Suggestions for proper follow-up care, post diagnosis via biopsy, include:
- Repeat antibody lab work within 3-6 months of diagnosis, then repeated yearly
-Annual blood draws for nutritional assessment, such as iron, zinc and lipids
- TSH levels, as those with Celiac Disease often suffer from thyroid issues
- Bone density screening for adults, repeated every 2 years
- Pneumonia shot (for adults)
-Annual flu shot
In addition to lab work, it is highly suggested that you meet with a dietitian who is knowledgeable about Celiac Disease. (In Michigan, I would suggest Marge Pestka or Lana Coxton) This is especially necessary if you have other health issues such as diabetes, kidney problems, or other health issues that are impacted by diet.
As Celiac Disease affects our ability to absorb vitamins and minerals, it's important that we eat mindfully to incorporate a diet that meets our body's needs. While multivitamins are good, your body will process and absorb nutrients better from whole foods than it will from supplements. This means we need to eat a variety of fruits and vegetables, lean proteins and whole gluten-free grains. Whole grains contain B vitamins, which regulate many aspects of our health, including our metabolism and sleep cycles. Good examples aer whole grain teff, quinoa and even whole grain corn. Eating these are key as many gluten-free packaged items are not fortified with vitamins and minerals like non-gf items are, so we must be vigilant.
Fiber and water are other important factors to our health. Both help in digestion and intestinal health. I personally suggest having a 1/2 cup of beans (pinto, kidney, chickpea. etc) per day. They're great on salads and in soups. The standard suggestion for water intake is 64 oz of water a day.
A word about probiotics (and prebiotics). Probiotics help establish healthy levels of the good bacteria in your gut. It's frequently referred to as the microbiome. Research is still being done on the effectiveness of probiotics in treating gastrointestinal issues. There are many probiotic supplements on the market, although reports have been done recently that some of these pills have been found to contain gluten. Again going back to the idea that your body prefers natural sources versus supplements, my gastroenterologist suggests drinking kefir daily and/or eating yogurt. I have personally been consuming kefir with a sliced banana daily and have found it has helped my digestive issues greatly.
What do you do if you accidentally ingest gluten? How do you take care of that not-so-fun situation?In most cases, it does not require a trip to the doctor or emergency room. As I explained earlier, Celiac Disease is tied to over 200 symptoms, and we can all experience them with different degrees of severity. Usually the most pressing issue is the gastrointestinal symptoms, because none of us want to be in the bathroom all day. Taking Miralax or Colace for constipation helps, as well as Gas-X for painful bloating. Sometimes the best thing is simply plenty of rest, lots of fluids and a bland diet until you feel better. Pretty Little Celiac has some suggestions on her blog as well.
Mental and Emotional Care
Celiac Disease impacts more than just our body. It places a toll on our mental health as well. Beyond Celiac states that those with Celiac Disease are 1.8x more likely to develop depression. There are many who experience panic attacks or other mental health issues when gluten has found its way into their system too. I've personally experienced panic attacks, and it's not fun.These issues should be addressed by a mental health professional. Never feel guilty about seeking out professional help, as your total health is important.
A main emotional issue with Celiac Disease the is psycho-social component. Celiac Disease affects our ability to eat every day foods, which therefore make dining with others difficult. Dating can be an issue when we have to explain why we can only eat at certain restaurants. It becomes a greater issue when the person you really want to kiss has just eaten a big piece of crusty French bread with crumbs of gluten all up in their grill. Do you ask them to brush their teeth before kissing you? (You actually should. I will admit that I don't always remember to make my husband do so.)
Another issue that we don't talk a lot about is faith. Not so much about what faith to follow, but how our Celiac Disease (and other food allergies and intolerances) affect our ability to worship in the manner that we choose. One of my most heart-breaking stories was talking to a woman who was newly diagnosed describe her sobs of grief when she realized she could no longer take communion. This is just one among many things we wish our worship leaders knew.
This is why I always suggest getting involved with a support group. The people there have gone through some of the issues you are going through.
- The grieving period over a complete lifestyle change.
- Unsupportive family members and friends.
- What to make for dinner, since it's harder to eat out
- How to save money when your medically necessary diet triples your grocery bill.
- The simple fact that you now feel "different."
But there's another reason to join a support group. It allows you to give back. It allows you to be the listening ear for someone else's journey. It allows us to turn the negative of a lifelong diagnosis into positives that we can hold on to. For example, I have so many friends around the country now due to my diagnosis that I don't think I'd ever substitute it for a "normal" life. That's not saying there aren't times that I don't still struggle. We all do, even after years of being diagnosed. But when we're able to step back from immediate situation, there are often times when we can find something to laugh or smile about, or be thankful about.
What steps have you taken to manage your medical and emotional care after diagnosis? Please share them below so that others may benefit!
Other topics in my Celiac Disease Awareness Month Factual Friday series: