Adjusting to Adult-onset Celiac Disease

If you’ve been recently diagnosed with adult onset celiac disease, you are probably feeling overwhelmed for a number of reasons including understanding just what risks celiac disease actually poses to your long-term health and learning to navigate a gluten-free diet, which can seem very restrictive, but is completely necessary to a celiac. Having recently gone through this ordeal myself, my goal in this article is to offer advice and clear information on what you’re dealing with as a celiac and newly gluten-free person.

First, take a moment to be relieved. Chances are it took you a while to get this diagnosis and in the process any number of things much scarier or much more difficult to manage than celiac disease were on the table. Don’t get me wrong, celiac disease is a hassle, and celiacs do have slightly increased risks of several types of cancers, epilepsy and infertility, but this by no means indicates that you’re likely to get any of these diseases. Saying that you’re at an increased risks often means nothing more significant than if 1% of the non-celiac population gets a certain condition, 2% or 3% of the celiac population gets the condition. Don’t freak out!

As you probably know by now, celiac disease means you have an intolerance to gluten that causes your body to attack the part of your intestinal lining that absorbs nutrients, potentially causing long-term damage to your health. And while you’ll feel instantly better once you eliminate all gluten from you diet, damage that has already occured to your intesting may take six months or more to heal, which means you may continue to have some mild symptoms for some time.

Of course, gluten hides in many foods, largely as additives and preservatives, and if you are continuing to have celiac symptoms after going on a gluten-free diet, it’s entirely possible that you’re still consuming gluten you were not aware of. Undistilled white vinegar (mustards and kethcups can be a culprit here) and food additives such as maltodextrin (definite source of gluten) and natural flavours and caramel coloring (sometimes source of gluten) may be what are causing you to continue to experience celiac symptoms.

A key concern for your gluten-free diet must be avoiding gluten contamination. This will be a trial and error process as all celiacs have different levels of gluten sensitivity. Some celiacs cannot eat food prepared in the same facility as any gluten. Others are fine as long as gluten doesn’t come into direct contact with their food (a bun placed on a hamburger, or candies made on the same equipment as foods containing wheat). Reading the allergy information on all packaging (and avoiding foods that don’t provide that information) will help you stay with celiac safe foods, as well as help you determine your level of sensitivity (I, for example, am fine with food made in a shared facility with gluten; shared equipment will result in my celiac symptoms being aggravated).

Finding gluten-free foods is of course much easier now than it once was, but they remain largely contained to chains like Trade Joe’s, Whole Foods, and individual health food stores. You can also order gluten-free products from websites like the gluten-free mall.

Eating out can be a particular challenge for the celiac sufferer. Don’t be hesitant to contact restaurants in advance to inquire about various dishes or to explain your situation. Hiden gluten in restaurant food is particularly common in sauces and soups, where flour is used as a thickening agent – French cuisine in particular contains a lot of risk here. Japanese cuisine is another probelm as wheat occurs in most sauces. Sushi, however, is safe for celiacs; but standard soy sauce isn’t. However, wheat-free soy sauce is easy to find these days – just be prepared to bring it with you. Other dining out foods you should be careful of are french fries which may be cooked in oil gluten containing foods are prepared in, cured meats which may contain wheat fillers or use undistilled white vinegar, and things cooked on a griddle that may also prepare gluten-containing foods such as pancakes or french toast. Until you get the hang of the severity of your celiac disease and the restaurants in your area, it’s a good idea not to eat out the night before important events, as frustrating as that may be.

While gluten is now a forbidden food for you, the fact is thanks to alternative flours such as rice, and the growing market of those who are interested in avoiding additives in food, there are replacement products for pretty much everything that’s prohibited for those with celiac disease. While some products do taste better than others, with trial and error you will inevitably find foods in every category in which you either can’t tell it’s gluten-free or think it’s delicious anyway. Unfortunately, because of the smaller market demand and the lack of preservatives in gluten-free foods, products for celiacs are often more expensive. Since being diagnosed as a celiac, my own grocery bill is now approximately four times higher per month. Newly diagnosed celiacs need to be prepared to change their budgetting.

Expect to go through a lot of emotional work while adjusting to having celiac disease. A common celiac symptom is also severe moodiness triggered by the ingestion of gluten. As you remove gluten from your diet, you may find that your generally emotional status is a lot better than it previously was, but this can be exhausting and confusing, especially while having to deal with the lifestyle change being gluten-free necessitates.

Finally, skin contact with gluten can also be a problem. Some celiac sufferers do have skin problems from gluten exposure, and if you use shampoos and other beauty products with gluten, you may be contaminating your food on a regular basis. Women need to be especially careful with makeup (particularly lipstick – MAC cosmetics, however, are gluten free), and all celiac sufferers should make sure wheat and other gluten containing elements are not in their soaps, shampoos or conditioners (it’s very common in hair products).

Celiac disease isn’t the end of the world, and in time, won’t even be much of an annoyance, but going gluten-free is hard. Best of luck. I promise it gets better.

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