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?

bloggingproduct review

Blog Design for Dummies Review (by a blog design dummy)

Disclosure: I was not paid a dime to review this book but wanted to write this Blog Design for Dummies Review because it is an AMAZING resource that I think every blogger should check out! This post does contain affiliate links. All opinions are 100% my own. These resources rock.

Blog Design For Dummies Review: By A Blog Design Dummy

Although I started blogging back in 2007, it took me couple years to really begin to understand what blogging really was and the whole bloggging community that existed beyond my own blog’s front door. The best thing I ever did for my blog was discovering The SITS Girls and signing up for a group class of 31 Days to Building A Better Blog. I met so many amazing ladies who have now become friends and supporters both of my blogging journey and my personal journey through life with chronic illness.

One of these amazing ladies was Melissa Culbertson.

Melissa blogs over at Adventuroo as well as over at Blog Clarity, which is a fantastic site that provides blogging, writing, and social media tips for bloggers. When Momcomm began, Melissa hosted weekly blog design critiques (which I was lucky enough to be one of the first critiques – check out this blast from the past blog design!) and these critiques went on to pave the way for Melissa writing Blog Design for Dummies so I totally take credit in helping her become the design rockstar she is today! Totally kidding! Melissa is a rockstar all on her own!

As I mentioned yesterday, as a part of reclaiming my life, I am working towards a new look here at a New Kind of Normal so I jumped at the chance to become more hands-on in the blog redesign this time around so I picked up her book, Blog Design for Dummies!

I am a total design and coding dummy and while I consider myself a pretty logical and analytical person, I have absolutely no background in anything graphic design related (I have degrees in music and pastoral care) so I was a little apprehensive.

My fears were totally unfounded.

I felt like this book was written for me. It was like a blueprint on how to plan your blog design from start to finish. From how to access what your goals and needs are to how to implement them from the overall theme to even the smallest of design elements so that you could feel your voice, your goals, and your dreams in every aspect of your blog design.

On my first reading of the book, I felt like I was back in grad school going highlighter happy.

Blog Design For Dummies - Inside Look

The language of the book was written in a way that anyone can understand. Its technical in each the reader about the important aspects that make up an effective blog design while insuring that the important information doesn’t get lost in over technicality.

I have always used a blog designer in the past and while I will continue to use a designer with this upcoming redesign, I felt like I am twenty times more aware of each integral pieces that makes up a design. I know know how to take a look at my current design and assess what is working and what is not working which helps me plan an effective redesign from the ground up. I have such a clearer understanding of how to find my voice and set my goals so that I can see those things throughout the design from the overall look and feel of the blog to how the navigation works to using those finishing touches that tie everything together.

On my second pass of the book, I went Post-It note happy and bookmarked each of the sections I wanted to focus on the most as I begin to plan my redesign.

Blog Design for Dummies - inside Look

Thanks to Melissa and Blog Design for Dummies, I have my to-do list started for planning this redesign and I think I am more excited than ever for things to come here at A New Kind of Normal!

I wanted to write this Blog Design for Dummies review because I know there are other people out there who want to step up their blog design so that they can achieve their dreams! If you are considering adding a custom design for your blog for the first time, planning a redesign like I am, or are simply looking for ways to assess your current design and make small adjustment that increase the overall functionality of your blog, you need to check out this book!

If you are not planning to change your blog design but are looking to grow your blog and create fresh content ideas, Melissa’s rockstar skills go way beyond blog design and her Content Brew course may be just the ticket! Cyber Monday hits a week early over at MomComm and on Monday, November 25th Content Brew will be on SALE for only $35 using promo code novbrew! Mark your calendars! You don’t want to miss this! (I am starting this for the 2nd time myself so if you want to partner up and work through it together, give me a shout!)

Disclosure: I was not paid a dime to review this book but wanted to write this Blog Design for Dummies Review because it is an AMAZING resource that I think every blogger should check out! This post does contain affiliate links. All opinions are 100% my own. These resources rock.

bloggingchronic illness

Tips For Attending A Conference When You Have A Chronic Illness

As you all know, I recently returned from my first trip to Type A Conference in the beautiful city of Atlanta! I wrote about my first trip to a conference when I shared tips on surviving a blog conference when you are an introvert but this was my first multi-day conference and it was a lot larger than my previous experience. Type A is bigger than Bloggy Bootcamp (my first conference experience) but still significantly smaller than BlogHer. This experience definitely proved my little introverted self would absolutely NEVER make it at BlogHer. I think the last BH conference surpassed 3000 attendees! Yikes! I only had to hide in the bathroom and cry once at Type A 🙂

While the trip definitely exhausted me and it took me nearly a week to recover, I still think that the trip was very worthwhile and I don’t think having a chronic illness can keep you from having a blast. You just need to modify your plans to accommodate your needs. Here are some things that I recommend paying attention to when you consider attending a blog conference (or any time of conference really):

1- Travel. I lucked out that Type A was only 3 hours away from home. There were conference attendants from all over the country who had a much heftier travel agenda than I had so for that I am thankful! If you are going to be traveling from a significant distance, be sure to add some buffer time in your schedule. Consider traveling in a day early and/or staying an extra day to allow yourself time to rest before the festivities.Type A kicked off Friday morning but I arrived in Atlanta around dinner time on Thursday so I was able to catch a quick dinner and spend the evening resting so I would be ready to go the next morning.Not only does driving wear me out but driving in Atlanta drives me absolutely batty which makes me more anxious which makes me stress which makes me more likely to flare. Because I knew this, I hooked up with some bloggers from the area to carpool down. I was glad to help pay gas and parking if it meant I didn’t have to drive! By the time time Sunday rolled around, I was so tired that I was twice as glad that I was not the one driving. Had I been driving, I would have definitely added in a rest day before traveling for safety.

2- Its ok to miss sessions and events. I know you want to soak in as much knowledge, networking, and good times as possible when you attend a conference but it is ok to take breaks. Your body needs breaks. Conference rooms chairs are not the most comfortable and walking back and forth for sessions and around the expo area can take a toll on your body and the last thing you want to do is push yourself too far and land in a strange ER. Conferences typically publish the schedule well in advance so pick out the sessions and events that are the most important to you and build your personal schedule around that. Allow yourself to be flexible and most importantly, don’t feel bad about making your health a priority. Would I have loved to been more involved in the night events and late night parties? Absolutely but I would rather leave early to get some rest in order to be able to fully enjoy the sessions and events I did go to. It is really important to listen to your body and go with the flow.

3- Dress comfortably. These days I am hardly out of yoga pants so I was really looking forward to wearing some real clothes and feeling cute and put together but I still had to take into consideration what I would also feel comfortable in. I have two large incisions that can make sitting for extended periods uncomfortable with certain waistbands so I had to take that into consideration when picking out my outfits. There would also be some walking around the expo area and between sessions that make comfortable shoes a must. Thankfully everything for Type A was in the same general area within the hotel but I know some conferences are more spread out. My go-to outfits for this conference where dark wash jeans, blazers, and fun accessories. I have decided that blazers are my secret weapon for feeling confident and put together!

4- Make sure you have the medications you need. While most hotels have a gift shop or convenience area where you can purchase Pepto and Tylenol, I am a strong believer in being a spoonie girl scout and being prepared. I also recommend traveling with your prescription medications in their original bottles. Heaven forbid something should happen but in case of an emergency, a doctor or responder would be able to know the medications you are taking versus having a pill case with a bigger variety than a bag of Skittles. You don’t necessarily need to bring a full bottle but I would bring enough for the days of your trip plus one as a spare. If you require prescription pain medications, I recommend traveling with a mini pill safe or keeping them on you just as a precaution. I also travel with a variety of OTC medicines as well as a precaution. I felt like a walking pharmacy as I had everything from Excedrin to Dramamine. I would also recommend wearing a medical alert (if needed) and installing an ICE app on your phone with your pertinent medical information in case of emergency (especially if you are not traveling with someone who knows your history).

5- Be yourself and HAVE FUN! I always worry about being known as the “sick blogger.” Many within the Type A community know my story, especially when I had to back out of last year’s conference at the last minute because of my bowel obstruction surgery. I was met with “How are you feeling?” on several occassions (versus the traditional “How are you?”) and at first I felt a little self-concious because I didn’t want to be known as that girl but I can to the realization that 1- while I am not defined by my illness, it is a part of who I am and shaped me into the strong woman that I am and given me the purpose for why I attend blogging events, and 2- these people are completely genuine, care about me as a person, and Type A really is a family of bloggers. Hopefully by knowing me and my story, they will be more aware of chronic illnesses and will be able to better support a friend or loved one who may be impacted by illness. I have to admit that I also loved being the blogger with purple hair! A tip if you have purple hair (or another unnatural hair color) – bring your own pillowcase to avoid color rub on the hotel sheets! I would hate to know what the Westin would have charged me for a pillowcase considering a bottle of water was $3!

Hopefully these tips will help if you decide to attend a blog conference (or any kind of conference) someday! If you have attended a similar event with chronic illness, what tips would you add to the list?

p.s. – if you notice over there on the sidebar, I have opened up A New Kind of Normal store on Zazzle! I am a very visual person and love having visual reminders to stay strong and keep up the hope especially when I am having a hard day! Let me know what you think!