Tag Archives: newly diagnosed with celiac disease

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Guest Post: Diary of a Newly Diagnosed Celiac

My name is Shannon. I was diagnosed with Celiac Disease in November of 2013 at the age of 51. I cannot tell you how long that I had Celiac prior to being diagnosed except that it was for many, many years. At this time, I am the only one in my family who has been diagnosed or tested. I have been a nurse since 1993. At that time, Celiac Disease was taught to be a very rare finding in “failure to thrive” children. I returned to school in 1997 to become a Nurse Practitioner. Again, Celiac Disease was a very rare finding and was to be considered in the “failure to thrive” child. I do not even recall learning about this in classes, simply reading a paragraph about this in a textbook at the most. I have had tummy issues since I was a teenager, poor dentition despite very good oral hygiene, multiple canker sores for as long as I can remember, strange illnesses, food intolerances, allergies, intermittent dizziness, anxiety, bouts of depression, herniated disks in my lower back, low vitamin D level, premature ovarian failure, and migraines. I have always felt as if I was treated as a hypochondriac and wasn’t tough enough to handle the “little things” that came my way. I have been to multiple doctors over the years trying to find out what was wrong with me only to walk away feeling like it was all in my head. Since my diagnosis, I have contacted some of my prior physicians to try to educate them as to what was really wrong with me. Some have been receptive and thanked me – others not so much. I am currently not practicing as a Nurse Practitioner for many reasons. I am teaching nursing students at a local college and recently started volunteering in the GI Department at Mayo Clinic in Scottsdale with an emphasis on Celiac Disease research. I am married to the most wonderful man who has been by my side through all of this. The ironies in life…. He owns a commercial bakery. He cannot go 100% gluten free because of his job but we have a gluten free household so that I always have a safe place. My extended family tries hard to understand my disease and what it means when we are all together. No one else has been tested as of yet and I am not sure if they will. I have learned over the past year that it is their journey, not mine. My escape in the past year has been gaining the most knowledge that I can regarding my disease and trying to educate other healthcare providers so that we can stop the years of suffering before someone is given the right diagnosis. Photography has been my other escape. When I am looking through the lens of a camera, the rest of the world disappears and I am by myself exploring the beauty in front of me. The diary that I have submitted is some of my thoughts from the first few months after I was diagnosed. I hope that it helps someone to realize that they are not alone in their struggles. I did not believe it when I heard it at the beginning but “it does get easier”.

It all started with looking up my labs on the patient portal on a Saturday evening, November 2, 2013 at 8:14pm. I had seen my doctor earlier in the week and told her that I was not feeling myself (in fact I told her that I felt like I was dying – that I was an 80 year old in a 50 year old body)…. Extremely tired, not able to think or come up with words, I felt like my eyes were moving all of the time, increased headaches, hard to even drive a car but mostly just exhausted beyond words. I was exhausted just taking a shower. My arm was tired just drying my hair. I would get ready for work in the morning and want to crawl back into bed. I would go to work and come home and take a nap just to get through dinner. My initial labs came back with a Ferritin of 10 and a low zinc (hello?? The reason for my sore tongue that my dentist had ignored and told me was hormonal). My doctor was concerned that I was bleeding internally so emergently scheduled a colonoscopy. Nope, I KNOW that is not the case…. It is something else. So I started eating high iron foods and vitamin enriched WHOLE GRAIN cereals and felt worse. My tongue was a mess, apthous ulcers, so sore that it was difficult to speak at times, my eyes were not focusing and still felt like they were always moving….. and then….. texting my doctor…..

“Dr. Internal Medicine, I just looked up the celiac bloodwork that you added. Have you seen it?”

“No haven’t seen it yet, what’s up?”

“Very high, all three celiac labs are back.”

“Ok will look when I get home, am out to dinner with no access to clinic labs. If so, we have our answer”

“Ironic that my husband is a baker, Have a nice dinner”

“Just looked at your labs. Yes antibodies are up. Tell Dr. Gastroenterologist  so that she can obtain duodenal biopsy specimens along with your scheduled colonoscopy. You may need a gluten free diet with retesting later. We will wait for biopsies to confirm.”

And so it began….YEARS of being sick, YEARS of being a hypochondriac, YEARS of only seeing parts of the puzzle and a text message gave me the answer.

November 3rd what in the hell can I eat? Gluten free…… what in the world does that really mean?

November 4th appointment with Dr. Gastroenterologist, yes, it looks like I have celiac from my labs alone. Your husband may leave for South Africa as originally scheduled and it is ok to delay colonoscopy as you are probably not bleeding internally after all, I will add an EGD for duodenal biopsies for conformational diagnosis of Celiac.

November 5th Jonathan leaves for SA and I have no idea what to do with myself. I have never cried so much, felt so awful, heart pounding, exhausted yet cannot sleep. I think of peach pie and I cry. I think of macaroni and cheese and I cry. I cry. I think. I cry.

November 6th celiac support group meeting by myself. I meet people who have had celiac for years. I meet a lady in 5 inch heals that told me that she was disabled with ataxia – excuse me? Why are you in 5 inch heels then? Food everywhere and supposedly all safe. I tried foods and they all tasted foreign and terrible. How am I going to do this? I miss Jonathan. I miss normal. What is normal? Everyone in the room has an absorption issue and they are all eating a bunch of junk food. Isn’t there something wrong with this picture? Talk of safe restaurants, websites to buy junk food, phone apps, reassurance that it gets easier, talk of the holidays, bread all awful except if toasted – why eat it then?? OMG I can never eat anything from Jonathan’s bakery again. Get that thought out of your head! Too late, more tears. Everyone seems too excited to have a new member to this unique group. I am not excited at all and will need to rethink this. I leave completely overwhelmed. I cry all of the way home and I am not even sure why I am crying.

November 7th I am slowly starving, (and now realize that I have been starving for years). I need to go to the grocery store. Too tired to care at the moment. Meat and potatoes and rice and veggies and fruit right?? I throw some things in my cart and go to check out. My favorite cookies are at the check out. I start to cry, I can never eat them again. I am crying over food again. Really? Nothing feels safe. Wake up! It’s just a bad dream. Everyone and everything is different all of the sudden and I am beginning to realize that it will never be the same again.

Appointment with the nutritionist. Mom comes along as she wants to support me. Let me get this straight? I meet with you for an hour and I already know as much as you? Really? All you can do is give me handouts that you read from. Really? She tells me that I should not visit the bakery because of the flour dust. So the bakery is a nuclear war zone to me now. Gluten is nuclear waste. Thoughts of Thanksgiving creep in to my head. Stop! I cannot go there yet. I hold back more tears. Email to Dr. Internal Medicine – “I need a role model please”. Strange experience at the support group and inadequate help from nutritionist. I need to meet someone who has a healthy attitude about this. I feel like I am treading water and want more than my nostrils above water please. A telephone call reply. Get your act together Shannon. If anyone can do this, you can. She shares that her daughter has a peanut allergy so it could always be worse. I am sorry to hear that but at this point, I really don’t care, sorry. She feels that I need help. No kidding! I asked for help. Referral to a Psychiatrist. Fine, Psych it is…. Because I am going crazy right? No! All of these years that I thought that I was crazy, because everyone made me feel like I was crazy, I was actually sick!

Lunch at moms today. Gluten free pasta. She went out and bought a dedicated pasta strainer for me and it is even labeled gluten free. First bite…. Wow, not so bad. Second bite and I smile. I can still eat “pasta”. My step-father begrudgingly joined us and actually finished his plate. Maybe we can all co-exist as a family during a meal after all.

Jonathan comes home from South Africa to a gluten free house. I have spent hours cleaning crevices in the kitchen, washing down everything, piles of gluten waste to be given away. My friend vacuumed the pantry for me and moved all of my “forbiddens” into the other room so that I did not have to look at them when I am hungry and trying to figure out what in the world I was going to eat.  My mother declares the frosted mini wheat box hers. My favorite breakfast…. Goodbye. So many goodbyes to food. It is so strange that a goodbye to an inert food item is so emotionally painful. SO let me get this straight…. Every time I did not feel well and ate crackers, I was making myself sick. Chicken noodle soup? Sick. Comfort foods like macaroni and cheese? Sick. My favorite birthday meal of beef stroganoff? Sick.

Still making it through clinical with nursing students. I am so thankful to be working part time right now although it feels like a 40 hour work week every day. Heart still pounding, still feel like awful from emotional standpoint and out of breath with one flight of stairs. Slowly realizing that my stomach doesn’t hurt as much. No heartburn. No pinching feeling. What is normal anymore? So my normal wasn’t normal?

Appointment with nutritionist at Mayo – what a breath of fresh air. Jonathan came along and I have begun to realize that he really cares and will be there for me. Great examples given, great discussion. Banning bakery visits is overkill. BTW, brush and floss before kissing if my husband eats gluten. BTW wax coating on veggies and fruits might contain wheat. BTW the vitamin D that you are taking is made in a place where they process products with wheat so not gluten free even though gluten free. Try another form of iron. True, you are not absorbing but try it anyways. Huh?

Bowel prep time for colonoscopy. Always nervous with new medications. Horror stories from friends and family about prep. Not so bad. Kept waiting for more that never came. Biggest problem is that I was already starving, now I can barely walk I am so hungry.

In for colonoscopy and EGD. I tell anesthesia that I am an intermediate metabolizer. His look said, I don’t care. I am very familiar with that facial expression from years of telling physicians all of my symptoms which they ignored. I sense an undercurrent of anger emerging within me. My psychiatrist tells me that I have medical post traumatic stress syndrome, I am beginning to agree with her.

Woke up and I was told that they were unable to do colonoscopy. Dr. Gastroenterologist seemed shocked by this. I had told her about my complications from prior surgeries (Celiac related? Who knows!) Jaw is incredibly sore, did I fight? Was I masked? Don’t care to know the answer. Now wait for results.

Call from RN on day before Thanksgiving. I have Celiac. Marsh IIIC. Gastritis. Take PPI. Nope, don’t want to. I already do not absorb and you want me to not absorb?? Will call me back. Once again, I sense that I am considered the “non-compliant” patient. Ok, hang up phone and go back to picnic. Picnic!! Really?? Is there nothing that is not related to food somehow

Somehow make it through Thanksgiving although we realize that our house must be 100% gluten free. Cheesecake that Josh begged to bring is on table, fridge, floor etc. Thank goodness he put red food coloring in it, makes it much easier to see everywhere that it was dropped, wiped on, etc. I cannot keep any of the leftovers…. Stuffing anyone?

I finish the semester with students and I notice that I look a little less translucent and the circles under my eyes are a little less dark blue when I look in the mirror. My heart isn’t pounding to the same degree when I walk up a flight of steps. There is nothing to eat at the hospital cafeteria so I now pack my lunch. The nurse’s lounge is like a nuclear waste zone with the gluten everywhere. The microwave has not been cleaned in years, half eaten cookies on the table. I am afraid to eat – cross contamination is a risk everywhere that I look.

My experiences with Celiac are all starting to blur together, does that mean that I am getting this down?

Christmas is heading our way. Is this gluten free, is that gluten free? So tired of those two words and I have a lifetime ahead with those words….. Need to find gluten free candy canes. Is there an app for that? I now have an entire page of apps for celiac. Who knew? Last report is that the candy canes were gluten free BUT now they are made in Mexico. Does that change anything? Peppermint stick ice cream – not this year, too tired to try and find the one that I can eat. Christmas cookies? Can’t go there. Telephone calls and emails to corporate headquarters. It is never ending.

Christmas morning breakfast. For years we have had Pillsbury orange danish. It is one of our holiday rituals. We never eat them except on this day. OMG. Never again! OMG they smell incredible. Stepdad is in charge of the eggs for me. Separate pan? Check! Separate butter? Oops! Too late, start over. Wash the pan, get new knife, get new butter. All for one egg! Almost not worth it. Plates? In the warming drawer with the orange danish and the English muffins. SO how much nuclear waste do you think is on my plate sitting below these? I get a cold plate from the shelf.

We bought a new toaster….. can’t stand gluten free bread. Ironic don’t you think?

Signed up for a macaroon class – the kitchen at Sur la Table is a nuclear waste zone for gluten. I can bake it, it is “gluten free” but I cannot eat it. Even the almond flour that they used is produced in a place that also produces wheat.

Went out to lunch with Jonathan to TruFoods. I thought they would be safe. They are not even though they insist that they are. I have to laugh as it reminds me of being a teenager “don’t worry I won’t get you pregnant” – “don’t worry I wont give you gluten”. Weird to think that way – maybe I can blame the gliadin antibodies (I use that excuse a lot lately). I explain to the waitress that I have the real thing. Not a fad. Not for show. I am surprised by the amount of vulnerability that I feel. She claims that she gets it and then brings gf pita with regular pita. Excuse me, which one is which? I inspect the gf pita as I have read to do. Avocado smeared on it. Did the person change gloves to plate my pita? Doubting it now. Have to send it back. Any safer with next round of pita?? Just because a restaurant is good for you, it does not mean that the restaurant is good for you.

Starting to plan for our trip to Yellowstone. How in the world am I going to do this? Calls to snowmobile tour office. “No problem, we will use gluten free bread for you” “What do you mean you can’t eat some of the chips?” “Which brands?” What do you mean we have to prepare your sandwich separately”? “what do you mean you cannot have croutons on the salad?” I realize that I will be packing a lot of food for this trip.

I have been nominated to find all of the restaurants and make reservations for New Years Eve and New Years Day so that I can go to dinner with everyone. No other family members have been tested and I am beginning to doubt that they ever will be – both by ignorance of the medical profession and denial by my family. I send out sample menus. I can tell that my stepfather has reservations (get it?) about some of my choices. Reservations made.

So Yellowstone in the winter is probably not the most celiac aware place to try out my new wings of being a celiac. I have reservations about going, I have reservations for dinner. Breakfast I suspect will be iffy no matter where we are. I get short of breath climbing a flight of steps, want to sleep by 8pm and I am going on 100 mile per day snow mobile trip for three days in zero degree weather in 7000 feet above sea level. I said yes why? Oh yeah, it was all in my head when we decided to take this trip. I just had tummy trouble and migraines when we decided to take this trip. I was just tired, burnt out from my job, stressed from being a stepmother of three teens. I had seen neurologists, internal medicine doctors, GI Specialists, dentists, eye doctors and it was always just me complaining about something weird when I decided to take this trip.

The plan was to meet at the airport for breakfast. I knew better and ate at home.  I may be new to this but I have already figured out that they do not really offer gluten free options the last that I looked.

So we take off for Yellowstone. First flight and I am offered a cookie that I used to hoard on flights – Bischoff cookies. I suspect that they are not gluten free. Actually I know that they are not gluten free because they were one of my favorite cookies. I explain to the flight attendant that I cannot have them. I am offered pretzels, nope not those either. I will take a coke and get something from my purse. Do I need a larger travel purse? Hmmm… good excuse to visit Coach. I wonder if it is considered  tax deductible?

We land in Jackson and where to go for lunch?  There is already talk of what to have for New Years when we all get together after dinner. Everything revolves around the meal that you are on or the next time that we are all going to be eating together. Dinner is at an organic and gluten free restaurant. Some of my family is already a little nervous with words like this being used so freely. My first dinner traveling went ok for the most part. 8 out of 9 were happy with the meal and I have to give my family credit, I know that it is because they love me that we were sitting at this table in this restaurant on New Years Eve. Why does a disease have to show you who loves you in life? Shouldn’t you already know these things? Can I yell do over? Didn’t think so.

Three days in zero degree weather with no one besides my family knowing what Celiac is. Still exhausted…. But I did realize that I never had tummy issues. I returned from this trip knowing that I can survive and learned how to just ask for my food to be “naked”. I survived. I know that I have survived much worse now…. I survived living with an undiagnosed disease for years, I can certainly survive now that I know what is wrong with me.

First visit at the periodontist for a cleaning since my diagnosis. I get my teeth cleaned every three months because no one believes me that I floss and brush all of the time. Now we know the real reason that I have had so many dental issues. I saw him briefly in December and told him that I had celiac. He shared with me that his 27 year old daughter had recently tested positive as well. I gave him an article about how dentists should be more aware of celiac and refer accordingly if they see a patient with apthous ulcers, dental carries despite good hygiene, geographic tongue, tonsilar stones, etc. So cleaning went well and pocket has improved. Hmmm… celiac caused some of my gum pockets? How many thousands of dollars of dental work have I had that I might not have needed if I would have been diagnosed 10 to 15 years ago. Time for the polish and she starts to polish my teeth… I stop her and say “this polish is gluten free right?” She stops and says let me check. Let me check?? Really??? Let’s review: I have celiac, cannot have gluten. She comes back with a different polish that she KNOWS is gluten free. Hmm does that mean the other one was not? Where in the world am I supposed to feel safe?

I wake up the next morning and all of my gums hurt. I have a migraine and feel like crap. Is this what glutened is all about? As the day progresses, I am feeling worse. Exhausted and good ole trigger points are back reminding me of how I used to feel every day. Day #2 post gluten – wake up with a headache and trigger points still in full force. My gums are now peeling so I call the office to tell them and to make sure that I never have that polish again. Apologies given, but too late. Again, there is a compounded mistrust of those who should be taking care of me are the ones that have harmed me.

Visit to the store this evening. Walking through Biltmore Mall it is a Friday evening and everyone is on the patios eating and drinking and looking like they do not have a care in the world. Clinking of beer glasses. The smell of spaghetti. A fully loaded gourmet burger on a brioche bun. A group sharing a pizza. All forbidden. A life sentence.

I have always loved my quiet time alone…. Now I feel like I am always alone. Even when I am with others, I am alone. This is a very isolating disease. I spent almost half of a day typing in the words is…… gluten free? Or speaking with customer service reps and inquiring if their product is gluten free. Ok, so it is gluten free but how is it manufactured? Why do I feel worse instead of better the past few weeks? It makes hope such an unattainable word at times. Be hopeful…. 5 months is a long time to keep hoping that tomorrow I will feel better yet there are people who get chemo for a year. They say that if you threw your problems into a bowl and then saw everyone else’s that you would pull your own back out… would I do that?

I need to look up chronic pain and see how common it is in celiac. I just put on my smile and keep going but I am SO tired of having pain every single day of my life. SO tired of it. I used to say, “just give me one day without pain” but now I do not even know if I want that because then I would want it every day.

I know that what I have is not that bad in the grand scheme of things…. I know that with every fiber of my being. It is what comes with the disease that I am having a hard time adjusting to. Jonathan is an explorer and I already felt like I hindered that… now I feel like I have totally blown out the candle. I will become more brave with time I am sure.

A positive thought… I can now do a day of clinical without feeling like I am going to fall asleep driving home. I can go up and down the steps between two floors without feeling like my heart is going to pound out of my chest. I can go home and do housework after clinical or stop and get gas in the car without feeling like I am going to break down and cry because I am so tired.

******I stopped writing this at around 6 months. In retrospect I stopped because that was about the time of a turning point for me. I could actually run more than one errand in a day and not have to take a nap. I no longer wanted to cry if I had to stop and fill up the car with gas. My eyes quit involuntarily moving, my toes were not longer numb and I actually had days with no joint pain. Sure, I have struggled with a road trip and a vacation since then but made it to the other side and I am stronger for it. My family has still not been tested and I am not sure if they ever will. I no longer will push them as they know how I feel and that is all that I can do. I returned to a temporary job this summer working 3 or 4 days per week which is the most that I have worked in over 4 years. I never called in sick which is a new thing as well. I look in the mirror now and see a more rested person, a more content and centered person. I am no longer on-edge and agitated. I have found foods to replace the ones that I miss and I am ok with being alone or eating before I go somewhere. There is positive reinforcement because I finally feel better – both mentally and physically.