chronic illness

5 Insider Tips To Know When Newly Diagnosed With Celiac Disease


So you’ve had the EGD, completed the blood work, and your results are in. Your gastroenterologist tells you that you have Celiac disease.

You may fall into one of three categories:

  1. You know all about celiac disease as you have other family members that have the disease as well.
  2. You know a little bit that includes some of the lingo and catch phrases as somehow being “gluten free” was trendy.
  3. You know absolutely nothing.

I fell into the third category. Like all of my other illnesses, I am the only one in my family know to have the disease. When we first suspected that there were gastrointestinal issues going on in addition to the endometriosis, I saw the local gastroenterologist first. At that particular office, when screening for Celiac, they perform the blood work first which tests for the presence of Tissue Transglutaminas Antiboties (or tT-IgA). The second step to confirm diagnosis is by taking a biopsy of the small intestines via an EGD. While 98% of individuals with Celiac disease will test positive for iT-IgA when eating a gluten-filled diet. However, there is a small chance of a false negative antibody test so the only way to truly confirm the diagnosis is by doing the biopsy.

Remember that small, roughly 2% chance I was talking about when it comes to a false negative? I am that 2%.  The bad part was that my first gastroenterologist did not do the follow through with the biopsy so he didn’t catch the Celiac disease and for 5 years, he just kept telling me to “eat more yogurt.” Finally fed up I got another opinion who did the biopsy first followed by the blood work and finally the light came on. I have Celiac disease. The benefit of being in the 98% means that your Celiac can be monitored via blood work but because I am in the miraculous 2%, I have to have an EGD in order to monitor the healing/progression of the disease. All I can say is that at least its only an EGD, not a colonoscopy. Not eating or drinking after midnight is infinitely better than having to survive a bowel prep.

Once the diagnosis was official, I said goodbye to my beloved creme filled Krispy Kreme donuts and Wendy’s Spicy Chicken sandwiches and set to work on figuring out this whole gluten-free lifestyle thing. While there is a part of me that gets annoyed with the gluten-free “trend” as I think it can take away from the real damage that can be done to the body by Celiac disease, the one good thing is that it has helped gluten-free foods, specifically gluten-free convenience foods, more readily available. They may cost an arm and a leg but at least there are options. I’m still waiting on the creme filled donuts and spicy chicken sandwiches.

However, I have picked up 5 insider insider tips for newly diagnosed with Celiac disease.

1) Get thyself to a dietician pronto.

If you can find one that specializes in Celiac disease and/or gluten-free diets, even better. I am so, so glad that my gastroenterologist knew someone to refer me to once I was diagnosed. Not only was she a registered dietician, she also had a daughter with Celiac disease which added great perspective. She could lay out how to balance my nutritional needs and give specific product recommendations. There was some trial-and-error already built in as she could tell me what products to absolutely avoid so I didn’t spend $6 on a box of crackers that tasted like drywall. She could also tell me what gluten-free cheesecake was absolutely worth every penny when I came across it. All the perks of taste-testing without having to do the taste-testing.

2) Create a gluten-free kitchen.

Your whole kitchen doesn’t have to be gluten-free but you at least need a little corner of it to be designated gluten-free. This specific post is just going to cover the kitchen in a broad sense and not include all the details of keeping your kitchen gluten-free while baking, preparing full meals, etc. That post will go up next week!

This is another area where my dietician was able to help me get set up because were so many things I never thought of. For example, you need to have separate toasters for gluten-free and non gluten-free bread. Some people become very sensitive to getting into gluten once fully gluten-free and it doesn’t take much for cross contamination. How often do you dump your toaster upside down to get out all the bread crumbs? If you don’t have separate toasters, all of that gluten would be transferred to you. Another appliance to be wary of in the kitchen would be a countertop deep fryer. You cannot deep fry both gluten-full and gluten-free products in the same fryer. That oil obviously holds on to everything. This is why you can eat french fries out at certain restaurants but not others (for example, Chick Fil A cooks their delicious waffle fries in designated friers so they are not sharing oil with breaded chicken that obviously is laden with gluten. God bless you Chick Fil A!

Another important area of the kitchen to pay attention to that is so easily overlooked relates to condiments or any type of products that you dish out with a knife or spoon. For example, when you open a fresh jar of peanut butter, the moment you take out a spoonful to spread on your regular (non-GF) bread and stick your spoon back into the jar for more, that jar is now contaminated with gluten. The same goes for butter, jelly, mustard, mayo, etc.

There are three easy ways to handle this:

  1. Establish a one knife/spoon rule in the house: You can only stick the utensil in the jar once. If you need more, you need to use a clean one.
  2. Have completely separate jars/tubs of products that are marked gluten-free.For example, you buy a two pack of the small tubs of butter and immediately label one with a sharpie or sticker to be gluten-free. For added precaution, you put the items marked to be gluten-free go in the door of the fridge while the others go on the shelf. This may cut down on the chances of cross contamination but it means you have to buy duplicates of everything.
  3. Lastly is a sort of combination of the two – use squeeze bottle products whenever possible. It prevents cross contamination without having to buy duplicates of everything. While not everything can be purchased this way, many things can and it is a great way to not have to constantly remind yourself every time you reach for something, “Grab the gluten-free. Grab the gluten-free. Grab the gluten-free.”

As I said before, I will go into the specific details of maintaining a gluten-free kitchen while baking next week but these are some more general tips for the kitchen that we may not think of.

3) Spend time reading labels at the supermarket.

The first few times you go shopping gluten-free, build in some extra time to go at a slower pace and read labels. Some supermarkets deserve a big high-five for adding gluten-free markers on the shelves or grouping all gluten-free products together but that isn’t always the case. Also, some items don’t say gluten-free specifically on the box/label but they actually are gluten-free and you could be missing out on something delicious.

Obviously when reading labels, the first thing to look for is the bold print. The top eight most common food allergens are required to be shown in bold print when present. These allergens include milk, eggs, peanuts, tree nuts (such as walnuts or almonds), fish (such as cod or bass), shellfish (such as shrimp or crab), soy, and wheat. Seeing wheat in bold sends up an easy red flag that the item is not gluten-free.

Another crucial item to look for on the ingredients label is the phrase modified food starch. The problem with this phrase is that its too generic. It is very possible that an item labeled as containing modified food starch could be gluten-free and perfectly safe to eat but there is no way to know for certain with just that amount of information. Modified food starch could refer to corn starch or it could refer to wheat starch. You could give it a shot and pray it doesn’t make your gut explode or you could adopt my motto, “If I don’t know, it don’t go.” Brands are finally starting to pay more attention with the rise of both the occurrence and awareness of Celiac disease and are starting to specifically say modified corn starch, etc.

Last thing you want to look for on a label is a little warning that may say “manufactured in a factory that also processes wheat.” That kind of warning indicates that while that particular product does not contain gluten, it is process on the same equipment or in the same area as products that do. It may pass over the same conveyor belts or get packaged in the same area. While there is a small chance of cross contamination, it is important to recognize that there is still a chance. If you are particularly sensitive, that may be enough for you to stay away. The Mayo Clinic provides a great resource on understanding reading food labels if you would like more information.

4) Plan ahead when eating out.

Thank goodness for the power of the interwebs in helping to make eating gluten-free easier when dining out. A lot of big name restaurants provide a gluten-free or allergen-friendly menu on their website so you can be sure that they do in fact serve gluten-free options before sitting down to order. Two of my favorite places to eat out gluten-free is Outback Steakhouse and Longhorn Steakhouse as they both make sure that great allergen information if available for their guests. Some restaurants are taking it one step further and making notations on the full menu on which items are gluten-free or can be altered to make gluten-free.In my experience, restaurants that take the time to add that information in their menus also take the time to make sure that their servers know what it means (my favorites are Fatz and Red Robins). However, if you are talking to your server about your gluten-free meal and it feels like they may not be understanding it (either what gluten-free means or the importance it being gluten-free), ask to speak to the manager. This is one area where you don’t want wires to get crossed. Nothing will break up a dinner faster than getting contaminated and having to sprint to the potty.

5) Check your medicine cabinets and vanities.

When I learned about how many off the wall things that gluten can be found in when I was first diagnosed, I was floored! Common items that can contain hidden gluten are supplements, vitamins, and medications. Again I think more brands are moving towards eliminating gluten but they are not all there yet so definitely double check. A few years ago, I started taking Vitamin B to help with my energy and I remember being so frustrated because I was feeling so crummy. I knew I was taking it exactly as directed. Then on day as I looked further down on the label under the directions, I got my answers. Whoops.

There is a lot of back and forth on whether or not beauty products that contain gluten can have a detrimental effect on individuals with Celiac disease. Some say the amount of gluten would be so, so low that it wouldn’t have any affect plus the fact that gluten cannot be absorbed through the skin. Others say why take the chance. If you know the item has gluten-containing ingredients, just avoid it. Or you can fall somewhere in the middle (which is where I happen to hang out at). Obviously when you have Celiac disease, you worry about ingesting gluten. If it is a products that has the possibility of being ingested such as dental products, lip products, etc, I go the extra step to know for certain it is gluten-free. One other product that I always look to be sure that it is gluten-free makes me look/sound a little crazy but I always check my hair spray. A lot of hair sprays use wheat proteins to help increase the hold and I know it makes me totally nuts but I know I’m not the only one who has had a major coughing fit after choking on some hairspray. Hello, my name is Jamee and I have OCD – Obsessive Celiac Disorder . . . 


Tips for living with celiac disease

There are 5 of my best insider tips for those that are newly diagnosed with Celiac disease, have a friend or loved one with Celiac disease, or are considering going gluten-free for other health reasons! What are some of your favorite or most important tips for living Celiac disease or any major illness that requires a major lifestyle change?

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One comment on “5 Insider Tips To Know When Newly Diagnosed With Celiac Disease

  1. […] is Celiac Awareness Month so it is perfect time to build on to my post with 5 insider tips when you are newly diagnosed with celiac disease. There is so much to learn when you change over to a gluten-free lifestyle and are living with […]


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