Anxiety is a big part of my Celiac disease, and I’m learning more and more about it every day. My first anxiety attacks were when I was about 4 or 5 years old. I would be in bed at night and I remember being very afraid of falling asleep because I was afraid I wouldn’t wake up. It would make me sad and scared, I would go down to my parents and cry, saying I was afraid of dying. Reflecting back, I wonder now if they weren’t panic attacks but warning signs that my body was ingesting something it shouldn’t.
I first realized that I was having issues with anxiety when I started having panic attacks in 2010. My husband and I had just moved to California and I was working a job that required walking into businesses, most without appointments, to sell ad space. Normally, I wouldn’t have a problem with meeting new people. I worked in people-facing businesses my entire career-life, it shouldn’t have been hard for me, but it was.
The beginning was great, I landed a big sale and was told by my manager it was one of the best pitches she ever heard. Unfortunately, a good sales pitch wasn’t enough, especially when they couldn’t deliver on the promises I was instructed to make. I tried to do well but soon realized it wasn’t for me and after a few months, I started having minor anxiety attacks that started with my heart beating faster. After a little while, tears would come. Sometimes I would just be sitting there at a sales meeting and these choking tears would come out of nowhere. My chest would start heaving and I would feel like I couldn’t breathe. I would see stars and had this horrible feeling of wanting to crawl out of my skin. I would excuse myself, go into the bathroom and try to pull myself together, but once I was alone the tears would start and not stop. I would go back out with red eyes, hoping no one noticed, but people asked questions.
I chalked the attacks up to the increased stress of my job and ended up leaving the company – it wasn’t worth the panic attacks. After some research, I found that the thyroid medication I was on wasn’t doing enough. I was taking Synthroid daily, which replaces T4 in the body. Many doctors prescribe Synthroid because the body takes T4 and produces T3. What doctors don’t understand yet is that when you eradicate the thyroid by either radioactive iodine treatment (RAI), radiation or surgery, it doesn’t work properly, nor does the thyroid work well if you’re inflamed. In my case, I wasn’t making enough T3. I did some more research and switched to Nature-throid in 2010 and that helped so much. Getting out of the job helped a lot, too.
WELL, THAT HELPED
But things didn’t really get better after that. I felt a little better, but my anxiety got worse. I would cancel plans with new friends at the last minute because the thought of interacting with people got me so worked up that I couldn’t leave the house. And that made me feel worse, because I thought I would be considered flaky or unreliable.
Even though I wasn’t feeling well, I still functioned and after that job I began doing web and graphic design full-time, meaning my interaction with people on a regular basis was drastically reduced. During that time quite a bit happened. I broke my right ankle and then we had to move because the house we were renting was being foreclosed. We moved back to Philly and lived with family until our condo was available. We fixed up the condo to rent it out again and then I broke my left leg slipping down our spiral staircase. I had a spiral fracture and a broken ankle from that fall. I wore a cast for a couple months, but my leg never fully healed. We decided to sell the condo and moved again, this time back to California, where our west coast family was kind enough to house us until we both became employed.
I worked in web support for about 2 years, where I answered calls and helped people learn and use company software. My clients loved me, but my coworkers, not so much. I was at the height of feeling my worst, everything I ate seemed to cause me problems. I was moody, tired and in pain all the time. My stomach was making funny noises, I was bloated and gassy. Gas would sometimes escape that I seemed to have no control over. It was so embarrassing. I felt like my body was on fire, but on the inside, so I probably wasn’t the easiest person to work with (sorry guys!). After my celiac diagnosis, things got better and my short fuse settled down…some. It was a tough transition to a gluten-free diet, with several accidental poisonings and snafu’s, but we all came out stronger in the end. They coined my nickname: “Julie Sunshine.”
My anxiety attacks started up again, this time they would start while I was getting ready for work. I thought it might be the job, but I liked the people I worked with and was in a good position. And after I was at work for a little while, I would calm down, so it couldn’t be that. I realized it was my drive into work that was causing the panic attacks this time. It wasn’t a super-long drive, about 35 – 45 minutes, but I had to take the I-405 freeway to get there, which is 5 lanes of wall-to-wall traffic. I tried taking the surface streets a few times, but even with traffic the 405 is faster and I could never seem to leave early enough to take the long way. I chose the 6am – 3pm shift just so I could miss some of the traffic and spare a little sanity.
Eventually, the company was sold and I didn’t have to take the 405 at all, and my anxiety attacks stopped. I did find out something interesting though. One day when I was having one of the panic attacks, I took my B-complex vitamins when I got to work because I was really tired that day (I stopped drinking coffee) and needed a boost. When the B vitamins took effect, I felt an immediate calm come over my body and my head was crystal clear – I didn’t feel foggy at all.
This made me wonder…could it work?
Have you ever burned your fingers and they took forever to heal? That’s what’s going on with me this month. As Sebastian would say, “My nerves are shot!” I have nerve damage from celiac disease and boy does it feel weird and yet not feel at the same time. I feel the nerve tingling more at night, in my neck, back, hips and shoulders. Then there’s the forgetfulness and memory loss, forgetting things told to me or that I did recently and losing memory of past events. Dropping things when I know I have a good grip on them. It’s a real PITA.
I’m realizing that my high tolerance for pain is most likely due to nerve damage. I know part of my ability to handle the pain is because I’ve trained my mind to block it, but I think part of the pain is due to nerve damage.
I burned my fingers, bad, by pulling a dish out of the microwave and taking the top off. I’ve done this countless times before and have had issues with the skin on a couple of fingers on and off, but I never put it together. This time I paid more attention, that or it’s possible my memory is finally starting to get better, but the skin issues I’ve been having on my fingers are due to burning them on the ceramic. My fingers can’t feel how hot they are until it’s too late, so when I finally notice it’s too hot, my skin is already burned.
It’s so interesting, and it takes my skin about a month to finally heal. It does eventually heal, though, and then I have to reset my iPhone fingerprint. First world problems. Though I’ve had to do it 3 times now. At least I finally figured out what it was! Pot holders ALL. THE. WAY. These are the pot holders I use, and these are the next ones I’m interested in trying. “Oh honey bunch…”
I normally like to stay on top of posts and it’s been a while since I’ve written. I took the summer and fall to reflect and take a deeper look into myself. It’s been a tough year, losing our baby Max was devastating. It helped to write for a while but then I lost my inspiration. I wanted to write and wrote drafts, but everything I wrote sounded like a complaint, which isn’t normal for me. Then I realized, dealing with celiac disease is sort-of one large complaint, for those with the disease and everyone around them.
I used to be a happy-go-lucky, balls-in-the-air, multi-tasking maverick, but celiac disease has caused holes in my memory and no energy to do the everyday things. I got pregnant on our trip back East, we began work on a big project and launched a new website when we returned and those things kept me very busy. I couldn’t find time to work on my crafts and have a slew of unfinished projects in the works. My house is a mess, dishes pile up in the sink, laundry goes undone for weeks. I want my energy back!
Energy comes in short spurts and doesn’t last long, I have a few hours up or out and then I have trouble smiling through the pain. All that affects me with celiac also affects everyone around me, because it can be difficult to control my responses when I’m trying to manage the pain. There are highs and lows we celiacs go through, ups and downs like being on a constant roller coaster. Usually I’m an outgoing, fun, happy person but I have cycles where I’m negative, depressed and not able to socialize. We lose friends and close contact with loved ones, because the celiac changes you. The ones who do stick around will tell you to stop saying the word ‘sorry,’ as apologizing becomes a serial habit.
In my last topic, I wrote about not only accepting your celiac diagnosis, but fully surrendering to celiac disease. It’s a life-long battle, I constantly talk myself out of pitying my situation – especially at the grocery store. I said to my Hubbs the other night that it’s not like it’s the end of the world, but I REALLY miss good pizza, ice cream, soft pretzels and cheesesteaks. Not that it’s food that is particularly good for you, but once in a while it would be nice to indulge without serious consequences. He told me it might as well be the end of my world, never being able to eat my favorite foods ever again. And that’s how people feel, that it’s the end of the world. They’ve told me they would rather shoot themselves in the head or jump off a cliff than never eat gluten again. I thought that was a bit extreme – I mean come on, there are other foods out there and at least I got to enjoy them for a while, but it does kinda feel like a life-sentence. Celiac disease does make life difficult, but it’s slowly getting easier as more and more grocery stores and restaurants embrace gluten-free foods. Here’s hoping it only continues to get easier to safely eat food without worry of cross-contamination or getting seriously sick.
I touched on ‘acceptance’ being an integral part of healing from celiac disease, but it’s more than that. It’s not only accepting the fact that you can’t eat or do certain things anymore, it’s also surrendering yourself to healing. Now that you have a diagnosis of celiac, what are you going to do to make yourself heal? What lengths will you go to to feel better?
Researching ways to heal my body naturally has become an obsession for me. I pour through journal articles, medical studies and even blog posts to try to find the right cocktail of vitamins, minerals, herbs and foods I need to consume in order to feel better.
Sometimes I feel like I’m reading in circles. When I get to that point, I take a break for a while. I just want to understand the processes in the body, how they work together normally and what causes them to misfire to cause disease. I believe that means taking into account many different paths of medicine, natural, modern, eastern, Ayurvedic and more. I don’t believe any one way is more beneficial than another; it all depends on the doctor, their knowledge and experience. If you are lucky enough to find a doctor that will spend their time to work with you on finding ways to make you feel better, you’ve got it made!
I haven’t been so lucky. My whole life has been one misdiagnosis after another. Doctors have gotten exasperated with me and my requests, they make me feel like I’m crazy for wondering about some of the things I ask. Modern medical doctors have done me wrong numerous times: performed surgeries, given radioactive iodine, and been generally uneducated in the functions and processes of the body, and my body in particular, before they administer surgeries or drugs.
One can say that modern medicine hasn’t been around for that long so how can we truly understand the processes and malfunctions of the body until recently, and yes that is somewhat true. Functions of the body have been known for millennia, with scrolls depicting veins and inner systems of the human body. We can understand more now, but modern medicine seems to turn a blind eye to anything that wasn’t documented before 1910, even later on other things. Methods of keeping ourselves alive for thousands of years are discredited because there isn’t a ‘proper medical study’ done on a particular remedy. If modern medicine wasn’t funded by drug companies whose sole purpose is to replace natural treatments with synthetic versions that they can make money from, what would be the state of health in America?
On that note, I don’t quite understand why the drug companies need to make it synthetic to make money. Natural remedies work, they just don’t work very fast. Our society has become so fast-paced that taking the proper amount of time to heal yourself is frowned upon. Read that again folks…taking time to heal yourself is frowned upon by the companies we work for and society at large.
I’ve been trying to heal myself my whole life and all I’ve heard is that it’s either all in my head or to just keep pushing through the pain. So that’s what I’ve been doing, pushing through the pain. Put on a smile and spread some sunshine when my stomach and joints are burning, a headache is threatening, my muscles ache and spine hurts high and low. I bob back and forth on my ankles because they can’t hold me up straight and my feet and legs ache to no end. It’s exhausting and I try, but I’m not always the best at bringing the sunshine and happiness every day. I’m much better now than I was a couple years ago before my celiac diagnosis, as I’m sure some of my old coworkers can attest, but I did try.
It makes me sad because I’m usually a very happy-go-lucky person, a lover of life with a positive outlook towards everything and everyone. I feel like celiac and modern medicine have robbed me of my happiness and chance at a normal, healthy life. I’m still angry and I need to just surrender and let it be. There’s nothing I can do to change the past, so I have to figure out what to do to move forward and get as healthy as I can from here.
I’m at the point now where my feet and legs ache so badly, it’s all I can think about. My lower spine has been aching and swollen, along with the upper part of my spine in my neck. I can’t focus or get lost in my work or creative outlets because the pain is taking over my mind. I’m laying here outside now, it’s getting chillier and I’m getting cold, but I don’t want to get up because my ankles, lower legs and feet are throbbing. I’m trying to form a complete thought and post here, but it just runs to rambles because the pain is the focus. I’ve put off surgery on my feet long enough and I can’t put it off anymore. The house is almost set up, the backyard is just about finished. It’s time to fix my feet. I have to surrender my Type-A, go-go-go, Miss Independent lifestyle to Celiac, and let it be until my body heals. If I could lie in a pool and float for a few months, that’d be great, but then my skin would probably get funkier than it is now. Celiac…I surrender…to the pain, to the worry, to the stress and uncertainty…to the healing.
Your doctor broke the news: Celiac disease. Lucky you! Great. Now what? Your doctor probably told you to follow a gluten-free diet, maybe they recommended a vitamin or two, and sent you on your way, right? If that’s the case, check the list below for 9 things to do after being diagnosed with Celiac Disease.
1. Search the Internet for Gluten. Search the web for gluten and find out everything that contains gluten so you know what to avoid. You need to know what to avoid so you can choose the right foods. Make a list, it will help. This list will be long and it will probably intimidate you and may possibly cause a minor (or major) panic attack. Realize this ahead of time and tell yourself to chill when your heart starts racing or everything starts to close in – all will be ok.
2. Tell your Family and Friends. Tell your friends and family that you have Celiac disease. Let them know that the next few months are going to be very difficult for you as you figure out how to handle gluten and your new gluten-free diet. Be prepared with what you’ve learned about your disease. They will ask questions, and you will want to know how to answer them. Burying your head in your hands and crying “I don’t know what I’m gonna do!” should be reserved for your best and closest friend and only said once. Trust me, it won’t get you sympathy from anyone else. The Internet exists and your life depends on you figuring out what to do – see step 1.
3. Reminisce. Think back on all the times you had to ditch your family and friends and didn’t know why. Think about past sicknesses or health-related issues you’ve had in your life including bone breaks, anxiety, thyroid issues, surgeries, unexplained illnesses, etc. All of these things may very well be linked to your Celiac disease. In me, it’s shown in bone breaks, stress fractures, thyroid issues, anxiety, teeth problems & surgeries, restless legs, inflammation, dry mouth, adrenal issues and chronic pain. In my grandmother, it caused Parkinson’s, Restless Leg Syndrome, fractures, stumbling and fainting. Malnutrition from Celiac disease can cause many, many ailments, syndromes and other diseases of bodily functions and organs. It can even cause cancer.
4. Join Online Forums and Message Boards. Where you can share your symptoms and stories and talk to others who can relate to your celiac disease. I found so much help in reading through the forums. Search for celiac and gluten-free blogs, read and comment. Your family and friends won’t understand like they can, it’s a tough subject to grasp. The Celiac community wants to help you in your journey to understanding your disease and how to heal.
5. Now You’re Educated. Accept the Change. Acceptance is the key to your health. Until you accept that this disease and gluten has caused all these issues for you, you will never be able to fully move on from gluten and remove it from your life. Accept that you are special and unique. You are the 1%. Somewhere along the way your genes were modified to not tolerate gluten – maybe it’s bad for everyone and your body just evolved quicker than others. We don’t know yet, but for the sake of your long-term health, the gluten’s gotta go.
6. Time to Implement Change. Get regular tests to monitor your healing process. Try to get tests for vitamin and mineral deficiencies and food allergies. Learn about the intestines, a leaky gut, the damage that’s been done by Celiac disease and what you need to do to heal your intestinal lining so your body can repair the damage that’s been done.
7. Change your Diet. Implement a specific diet tailored to your needs. Remove any and all gluten, barley, rye and malt from your kitchen, bathroom and laundry room. Check soaps, shampoo, conditioner, lotions, creams, serums, detergents, etc. for gluten and replace with gluten-free versions. Check your medication ingredients for gluten. Buy new pots, pans, utensils, and bowls that will be designated gluten-free. To be on the safe side, replace everything if possible. This may be hard for those in your family who don’t have to change. Ask them to be supportive of you and this new diet as you get used to it, and maybe have them only eat gluten when out of the house until you get your gluten-free cooking mastered. I keep a separate pot, bowl, spoon, etc to make my husband his gluten, but most of our meals are gluten-free. Cook everything separately and be careful not to cross-contaminate. You will think you aren’t that sensitive, but trust me, you are. The Celiac body cannot handle any amount of gluten. Think about the body’s reaction to gluten this way – if you eat gluten, a fire erupts in your gut and slowly spreads around your body. It will not go out, no matter what you do to tame it. This fire spreads through your body for months, frying nerve endings and villi, causing inflammation and destruction everywhere it goes. Whether you feel it or not, this is what gluten does to your body and why it’s imperative to avoid gluten at all costs.
8. Keep a Food Journal. Write down new eating habits and how they make you feel. As a celiac, you have a tendency to forget things, like what a certain food did to you two months ago, or whether or not that restaurant you went to really understood your dietary needs. It’s important to write down what you eat and how it makes you feel so you can avoid the foods that cause you problems. Beginning on the celiac diet, you’ll need to remove a lot of foods as many will cause you sensitivities and impede on your healing process. The main ones are dairy (lactose), eggs, corn, and nuts. In the beginning this list may seem really long, but as you remove things and heal your stomach, you should be able to add those foods back in moderation, though it will take years for this to happen.
9. Don’t Worry, Be Happy. Your life will change. Eating out will not be as fun as it used to be, it can become a stressful situation. I recommend not eating out until you understand your disease and learn how to eat again. Please don’t let this get you down to the point that you can’t get up again. When I was diagnosed there weren’t many options available and I recall coming to tears in the grocery aisle as I searched for something I could eat, and that was only 2 years ago. I can’t imagine what people went through 10 years ago. Today, there are so many more options available and more restaurants are accepting the gluten allergy and being conscious of cross-contamination that it’s becoming easier, and tastier, to handle celiac disease. Things will get better and you will heal if you stay focused on your health.
Lately, the pain in my feet has been getting worse and worse. Yes, my feet…again. (Begin rant…) It stinks. I haven’t been able to play sports or do any real exercising in a long time. I miss playing tennis, basketball, going for walks and runs, hiking, volleyball, bike riding and just being active. I even miss the elliptical machine. I got a set of golf clubs 2 years ago and I haven’t even had a chance to use them! NOT COOL! Celiac is ruining my feet and ankles! (…end rant)
I have multiple stress fractures, talar dome lesions, tendonitis, swelling and other medical terms for bad things going on in my feet, ankles and legs. My tendons, ligaments and bones have been ravaged by a lifetime of playing hard and an intolerance to wheat (Celiac). Over the past 5 years I’ve broken numerous bones. When I was pregnant, I was still recovering from a broken ankle (six months later) and it was slowly getting better, but it did not heal completely. I had to give up on it after a few months of pregnancy because I couldn’t crutch anymore due to my wrists breaking down. It’s very frustrating, and my right foot is in worse shape than my left. Over the weekend I had some issues with my right foot locking up again, and when it does, it’s like any move I make will break it. I have to carefully bend and move it around until it pops back into place, which is very painful.
Back in 2005 a doctor told me a steroid shot would fix my right foot, but all it did was make it worse. It caused me to be on crutches for a week; my foot was swollen, bruised and painful to walk on for a couple weeks afterward. I’m not sure what’s in those injections they give you, but my body had a bad reaction to that one. I’m also not a great reactor to surgery. In 2002 I had my tonsils removed – the healing with that took FOR-EV-ER. A week after I had them removed my mom raced me to the hospital at 4 a.m. I was back in surgery having the wounds burned closed because they starting bleeding and wouldn’t stop. The percocets they prescribed made me so sick I couldn’t keep anything down and the anesthesia wearing off made my whole body tingle and hum. After a few days of yakking, which doesn’t exactly tickle after a tonsillectomy, they gave me Tylenol with codeine which took the pain away without causing the sickness. I haven’t taken strong medication since, and the last couple times I had lidocaine and novocaine injections, my heart started beating super fast and my whole body started jumping and twitching in the chair. I’m trying to heal my foot myself, hopefully without surgery, unless it’s absolutely necessary or not major.
All the doctors I see want to shoot steroids in my feet or cut me open for surgery. My body is so malnourished from celiac disease, it takes me 2 to 3 times longer than a healthy person to heal. I’m of the belief that the body can mostly heal itself given the proper treatment and time. The problem I’ve had so far isn’t the proper treatment, it’s the time. I’m horrible at staying off my feet. I like to go-go-go and do-do-do. Being in a cast and staying off my foot works for about a month. I use crutches, and now have a great knee walker and knee scooter to get around. They help so much, except for around the house, which is where most of my movement happens. I use the knee-walker if I’m going to be up a lot, but the up and down is more difficult because the latches aren’t exactly easy to get on and off. That’s where I really need to use the crutches. Being on crutches doesn’t bother me that much. It gives me a good workout and after a couple weeks my arms and shoulders look incredible! The only problem is that also after a couple weeks, my wrists start to break down, and within a month my joints hurt so bad, I can’t crutch or even hold myself up doing yoga poses. So I walk on it in the house, which ends up making it take longer to heal.
I’ve read in the next 10 – 15 years they might have a way to heal the bones naturally by injecting stem cells or some awesome crazy vitamin/mineral/antioxidant juice. Until then, it looks like I’ll be in and out of surgeries and in and out of casts. For now, I’m looking for someone who will fix both feet at the same time so I can heal all at once. I do not want pins drilled into my feet, from what I’ve read that only makes the situation worse. There has to be a better way… Do you have issues with your feet or ankles hurting or breaking often?