There is a ton of information out there on Celiac Disease, but it’s not always accessible, understandable, or without judgment. And it really shouldn’t be that way. Some people have mild discomfort and are looking for ways to improve their life. Others may have been dancing around the idea of gluten issues or Celiac for a while now. So, here are my top ten thoughts that I hope can help you make your own decisions.
1. Not everyone who has problems with gluten has Celiac. Some people have gluten intolerance or gluten sensitivity. Just because you have a Celiac blood test come back negative does not mean that it’s all in your head.
2. While there are tell-tale signs, not everyone experiences Celiac the same way. Both men and women can have swelling that makes them look really pregnant, but that could also be from IBS (which often goes hand-in-hand with Celiac and gluten intolerance and from which I also suffer).
3. The only way to be 100% sure you have Celiac is through blood tests or, preferably, biopsy of your gut. The biopsies are invasive and can sometimes be painful, but they are performed with an endoscopy (camera down your throat and into your stomach and gut) and under general anesthesia. Your body has the amazing ability to repair itself internally extremely quickly, assuming you are in otherwise good health. The wounds from the biopsy should heal completely within 48 hours. You likely will not notice them on top of your other symptoms.
4. The downside of the blood test or biopsy: If you have already determined you have a problem with gluten and stopped eating it, the tests will come back negative. There is only the possibility for a positive result if you have been eating gluten for 4-6 weeks before the test. If you’ve ever had a gluten accident or had to eat gluten for a health test (I did for a heart monitor), you will likely say that it’s not worth it to get the diagnosis when you already know you have a problem.
5. People do take the term “Celiac” more seriously than “gluten intolerance” or “gluten sensitivity”. Be aware that, if you choose not to take the Celiac test because you don’t want to eat gluten, it will make a difference in how some people treat you.
6. Read every label. You would not believe the stuff gluten is in. Check ingredients lists, and check them often. Recipes change all the time. Doritos in the UK used to be gluten-free but no more. Lindt chocolates are now made with barley malt, which contains gluten.
7. You would be much better off making your own sauces and spice mixes at home (or at least buy from a handmade shop — the extra cost is worth it in this case because it’s fresh and you can ask exactly what’s in it.). Gluten can be used as a stabiliser in these products. It thickens sauces and gravies. It keeps spice mixes from separating into layers or clumping because it will absorb moisture quicker than the rest of it.
8. Celiac or not, corn isn’t good for you. It is hard for all people to digest, and it’s particularly hard for people with gluten problems. It doesn’t make much sense because there isn’t gluten in it. What I do know is that corn is a grain, and humans have found a way to eat it as a vegetable instead. It was never intended to be eaten on the cob, by the kernel, or popped in oil and air. We can’t digest it. However, cornmeal and cornflour are often used as substitutions for wheat flour. It isn’t as bad for you when ground up into these forms, but it still isn’t digested as easily as other flours. Just be careful.
9. If you are diagnosed with Celiac, it’s in your best interest to invest in some bigger clothing. It’s not that I’m saying you will gain weight — you may as you find your way in this new life — but you will have “fat days”. It’s not fun, and it’s not comfortable. You don’t necessarily need an entire new wardrobe, but get yourself some new house clothes, a pair of bigger jeans, a few t-shirts or whatever tops you wear on casual days, two professional outfits (if you have need for them in your life or line of work), and two formal event outfits. It sounds like a lot, but when you have a gluten accident (I refer to it as “being glutened”.) or simply have a stressful couple of days, you’ll feel a lot better having clothes that fit rather than trying to squeeze into clothes that will only make you more sad, tired, and stressed out. Emotions run high on these fat days because your body will be spending most of its energy working through issues in your gut.
10. It’s not easy. Take it day by day. While you should never undertake a diet that fully eliminates a vast amount of food without extensive research and/or doctor consultation, it’s not going to hurt to try. Anyone can go two weeks without something. If you have a problem with gluten, you’ll know. You’ll probably know sooner than that. It took me two days to know. It’s likely I’d gone two days many times in my life without gluten, but I probably just thought that they were good days without thinking about what I’d eaten. If you do not have a true problem with gluten digestion, I cannot recommend going completely gluten-free. I would love to have a gluten-free home, but I know it is not healthy for my husband, and it won’t be healthy for my children if they don’t inherit the Celiac. There are some people who could be considered “Lifestyle Celiacs”, but I don’t think it’s a good idea. However, if it makes you feel better, give it a chance. Talk to your doctor or a nutritionist. Find out. It may seem like Celiac and gluten problems are the fad of the moment, but it’s mainly due to the fact that a lot of people are only finding out that wheat can even cause problems, as well as the Lifestyle Celiacs (Lifestyle ANYTHINGS tend to be very vocal, which I can’t say is always a problem since it can increase awareness for those who genuinely have issues). Celiac is not a fad. It is not a fraud. And, it is not something you can ignore if you have it. Every day that you continue eating gluten damages your body.
Bonus: Let those you care about know what’s going on. You don’t have to tell them everything that’s happening in your bowel habits and everything you’ve eaten that causes issues, but tell them you have a digestive problem and have to be careful. It makes eating at restaurants and friends’ houses easier, and you don’t have to pre-apologise on every bad day. Take credit for your bad actions — it’s not an excuse, but a reason — but those you care about will understand that things are tough sometimes. Be honest, and they will help.