celiac disease Archives - A Troubled Gut

Have Toaster Will Travel

It has been a bit of an adjustment since my new diagnosis. I have been gluten, dairy, and egg-free for the most part for a handful of years now. I always thought though that I was being overly cautious regarding the gluten issue since my blood tests came back negative for celiac disease during that time. It was not until the recent test results confirming celiac disease (and refractory at that!) that I realized I had to make a few more changes around food. While I was always careful, I am now meticulous with ensuring I’m not ingesting gluten and doing what I can to avoid cross-contamination at home in the kitchen and while dining out too.

One of those changes at home is having a separate ‘gluten-free products only’ toaster for myself. And that change at home follows us on our travels too. I have now added ‘toaster’ to my packing list (not that I even have a packing list-it’s in my head somewhere). Friends that travel with us very kindly and quickly learn to ‘step away from the toaster’ if they’re looking to toast their gluten-ful foods.

We have recently returned home from a trip to the Atlantic Provinces (with toaster in tow). It was spectacular standing at Cape Spear – the easternmost point in North America, getting ‘Screeched In’ and becoming an honorary New Foundlander at Christian’s Pub in St. John’s, hiking the Middle Head and Skyline Trails, in Cape Breton, and walking the red sand beaches of PEI. Oh, and the Celtic music at the Old Triangle Irish Pub in Charlottetown, PEI was moving. A small slice of the wonderful memories made and experiences had during this trip with friends.

When we first began planning this trip, I was somewhat concerned that the eateries in smaller towns on the east coast would not provide gluten-free options. We were staying in AirBnbs throughout the trip, which was great. Having your own kitchen while travelling alleviates some of the food stress involved with eating away from home. In addition to the toaster, I diligently packed my gluten-free bread, snacks, and other favourites.

I’m pleased to say that for the most part, my worries were unwarranted with regards to dining out on the east coast. Yellow Belly Brewery in St. John’s offered gluten-free pizza crust and buns for their burgers along with non-dairy cheese. Coastal Restaurant in Ingonish, Nova Scotia had the most delicious gluten-free hamburger bun for their famous Ringer Burger in addition to having a gluten-free burger patty. They were so wonderful in changing up an appetizer for me too.

Pubs tend to not always have much selection for anyone with celiac as many things are battered and deep-fried so I was oh so pleasantly surprised at the Old Triangle Irish Pub in Charlottetown, PEI. There I was able to enjoy wings, fries, and even calamari since they had a separate fryer for all things gluten-free! Now I know that these aren’t the healthiest food choices, but I’m on vacation and was thrilled to be able to enjoy some pub grub!

There were definitely times though when finding appropriate items for me to eat while dining out proved to be challenging. It’s these moments when I felt like such a pain to everyone else. When I feel how much this disease affects all those close to me and I really hate that. I don’t like being a bother to others and I often feel that way in these situations. I know I shouldn’t, it’s not like I can help it, but I do.

We always have to check the menu before deciding to stay. No point in being somewhere I can’t eat. The choices aren’t always that great. Of course, most places will at least have salads of some sort but that’s not something that keeps me satiated and can often aggravate my insides. It’s occasions like these too that I experience food envy and can feel a bit sorry for myself. Everyone else gets to order and enjoy what they like or are craving whereas I must pick what won’t make me feel poopy – literally!

This on top of prednisone induced hunger, which doesn’t make ‘hangry’ but does leave me somewhat whiny (whinegry?) at times. Happy to say this doesn’t happen too often but, as I’ve mentioned before…

…I’m still adjusting…and apparently with my heels digging in every so often!

Don’t get me wrong, I am thankful that I am well enough to travel and really do have quite a diversity of foods that I am still able to eat. I’d be lying though if I said I don’t miss the freedoms of my previously healthy guts. We are all prone to taking our health for granted – those carefree days, you just don’t truly appreciate them til they’re gone.

The most difficult part of the trip, food-wise are the airports. You can’t always bring food with you and although it is becoming easier to find gluten, dairy and egg-free healthy snacks in the food establishments once you get through security, the offerings are quite limited and meals are hard to come by. One food oasis I found at an airport was Bistro Montreal-Trudeau where they offered roast chicken, grilled salmon, and veggies. I was also thankful to find a Freshii in St. John’s International Airport. I wasn’t even that hungry at the time (that’s rare!) but I ordered some food because I could! Besides, once you’re on the plane, gluten-free choices are minimal or as I have found a few times – sold out!

The culinary options are increasing and improving I’ve noticed over the last handful of years. Likely because more people are diagnosed with food allergies, sensitivities and other digestive disorders. I suspect the quantity and quality of food choices will continue to improve too making the dining out portion of travelling easier.

So despite an occasional food bump or biological emergency (which just goes with the territory of living with a chronic bowel disease), the trip was wonderful. My current health challenges are not enough to keep me from packing up my suitcase yet again and venturing off with Doug to explore another corner of this beautiful globe.

Along with the toaster of course!

Refractory Celiac Disease: A New Diagnosis

Recently I went through a few diagnostic procedures to see what the heck is going on in my guts since they have been quite tempestuous over the past year. Once again landing me in the hospital a number of times. Has something new developed? I had the usual colonoscopy and endoscopy in addition to a capsule endoscopy where you swallow a vitamin-size camera (a very large vitamin, I might add!). The camera spends the next several hours taking pictures as it moves through your intestinal tract. My nurse told me it takes roughly two pictures per second. That’s a lot of selfies!

The results were similar but different. Thankfully, the microscopic colitis is in remission – my colon looks healthy. The inflammation remains in the small intestine with the pathologist’s report results showing that I have refractory celiac disease – or refractory sprue and not collagenous sprue. The difference in part having to something to do with the thickness of the mucosal lining in the intestines.

What Is Refractory Celiac Disease?

So much has yet to be learned about all diseases of the bowels, but being so rare, even less is known about refractory celiac disease (RCD). You can read about some of the medical details and differences between refractory and collagenous sprue and celiac disease here at The Archives of Pathology and Laboratory Medicine but how I see it is that it’s celiac disease on overdrive.

It is a complicated autoimmune disorder, similar to celiac disease, but does not respond to a minimum of six months on a gluten-free diet. The villi in your intestines deteriorate (mine are apparently blunted) and are unable to absorb nutrients and fluids from food. Hence the malabsorption – aka: diarrhea. With RCD the small intestine does not repair and damage continues despite maintaining a gluten-free diet.

There are two types of RCD – Type 2 the more aggressive and difficult to manage can lead to enteropathy-associated T-Cell lymphoma. That sounds frightening – and it is – it does not have a good prognosis.

Somewhere along the line, I have gathered the information that some researchers consider RCD to be a complication of poorly controlled celiac disease and yet others find that the disorder has its own particular features. (I have recently read so many reports and cannot remember or am unable to find the source of said information so please do your own research too.) Research has also found that the bulk of onset of the disease is in your 50s and the incidence in women is higher than in men. Yay me! Not a criteria I really wanted to fit in to.

What next?

For me, the new diagnosis is a somewhat ‘six of this and half a dozen of the other’. The symptoms are the same, the prognosis is similar and the treatment is the same. The fact remains that I am not able to tolerate or am allergic to the therapies that are known to work. Other than Prednisone as I’ve mentioned in a previous post.

Still, I am not disheartened. Over the years my blood tests have always come back negative for celiac disease. Therefore, this new diagnosis of RCD did come as a bit of a surprise, but it may be a bit of a silver lining. Well, that’s how I choose to look at it anyway.

In searching for information on RCD, I came across a vaccine that has been developed and in clinical trials for the treatment of celiac disease – Nexvax2. The vaccine works for patients that carry the HLA-DQ2 gene which most celiac patients have. Beginning with small and then gradually increasing doses, the vaccine is meant to help the body build up a tolerance to gluten.

In this case, I’m happy to fit the criteria! Along with the aforementioned endoscopies and colonoscopy, I was tested to see if I carry the HLA-DQ2 gene and I do.

So for now, I’ll keep on as I am and excited and hopeful for new therapies in the future.

How Did I End Up Here?

Some Health Backstory

It wasn’t always this way. Things began to veer off course as I was approaching my 50^th birthday. Happily trucking along in life when my guts decided to make things messy – quite literally! Hot flashes and mood swings I had been mentally preparing myself for at this stage in life but chronic diarrhea?! No one warned me about this! At first, I thought it might have something to do with the hormonal changes that menopause brings but no. Turns out I had lymphocytic colitis, a not so common inflammatory bowel disease. ‘Colitis light’ I called it since the symptoms were not as devastating as Ulcerative Colitis or Crohn’s and it did not put me at a higher risk of colon cancer. I learned to manage it for the most part through dietary changes and over the counter medications. For some lucky people, lymphocytic or microscopic colitis somehow clears up on its own. I was sure I would be one of the lucky ones.

Skip ahead a couple of years and my guts became considerably more troublesome almost overnight after taking antibiotics. Relentless diarrhea that landed me in the hospital weak, dehydrated and with low electrolytes. Prednisone was prescribed until further tests, including a colonoscopy, could be done to determine what else was going on in there. Nothing conclusive was found.

Searching for other possible solutions, I began to work with a naturopath. Between taking various supplements and eliminating a number of foods which I had a sensitivity to, the diarrhea was under control and I was slowly reducing the prednisone. For three glorious weeks, I felt hopeful and better than I had in months. That feeling was short-lived. I had mussels at dinner one evening (which are not one of my food sensitivities, I might add!) and all progress was gone. Something must have been off with the mussels as I became violently ill that night and my bowels have not been the same since. At that point, not even the prednisone worked. I did whatever I could with anti-diarrheal medication from the doctors and supplements from the naturopath. All helped enough to get me through the day at work but after weeks of this, I was slowly becoming weaker and losing weight steadily.
It is strange but somehow you adapt to this new debilitated self and it becomes normal to you. Some days or moments, you even feel you might be getting better. Funny how the mind plays tricks and how we can rationalize our situation much to the chagrin of loved ones who are much more cognizant of our decline.

Eventually, I went to the hospital again overnight because I was so dehydrated – to get my fluids topped up so to speak. I also began another medication which I anticipated would calm my insides down. I was fine, I am managing this I felt and did not think that I needed to be admitted to hospital while we waited to see if the new meds would work. I was afraid that I would not come out again, of not being able to work anymore. I was afraid of this un-named disease truly not going away.

I was not fine, I tired easily, could barely walk up stairs and was losing weight drastically. A week or so after my last hospital visit my daughter suggested I visit the family doctor to see what options there might be other than going to emergency. He took one look at me and was calling emergency to get me in ASAP. Skip the line sort of thing. I had been coping, adjusting, and unknowingly become quite critical. My blood pressure was very low as was my potassium level and other electrolytes which put me at risk of ‘fatal heart arrhythmia’ as one nurse told me. I was placed on a heart monitor and I was to be put on Total Parenteral Nutrition (TPN). Despite eating, I was not absorbing many nutrients and slowly starving.

After a number of more diagnostic tests, finally, a diagnosis – collagenous sprue. A rare inflammatory bowel disease thought to be linked to Celiac Disease. ‘Collag-a-whaat?!” I thought. My gastroenterologist was thrilled to have a diagnosis at last; all I could think of was that he stop talking so I could go throw up.

So we began to learn about what this rare disease is. It was unnerving to first read one early documented case, a middle-aged female, in the early 1970s succumbed to the illness. A disorder that along with lymphocytic colitis, women in their 50s are more likely than others to be diagnosed with. Yay me! I won both rare prizes.

On the heels of this overwhelming diagnosis, I had a significant intestinal bleed the following night. Nearly losing consciousness, I required an immediate blood transfusion. It all seemed so unreal, this is not really happening to me, is it? I was afraid to go back to sleep, afraid I would not wake again. I am ever thankful to the nurses and doctor that took care of me that night.

I came home after two months in the hospital and the completion of training for Home TPN Program. I remained positive that the biologics therapy I was on would put the collagenous sprue into remission or at least make it manageable. After two infusions, things were not yet turning around. Over the following five weeks I was at home, the nausea and weakness increased and I experienced other medical complications due to months of malabsorption. Blood work showed that my liver and kidneys were not functioning well. It was back to the hospital for me.

Things were not looking good. It felt like my body was giving up. No one was sure that I was going to get through this. I made peace with my Maker really feeling that I would not be here for many more days. After a couple of weeks miraculously, it seemed, I began to feel marginally better each day and was well enough to come home three weeks later.

I was not giving up on the biologics yet since I had heard that it can take three to four infusions before you really begin to notice substantial improvement. I had the third infusion and began to feel even better roughly a week to ten days following. The nausea had completely subsided and I could finally eat more than a tablespoon or two of food. Many fewer trips to the toilet too.

My hopes were dashed again with the fourth infusion whereupon I had a severe allergic reaction. I tried and didn’t respond well either to other Anti-TNF blockers. Thankfully, at this point, I was off the Prednisone and aside from a daily antidiarrheal, I was holding steady. It seemed I was somewhat in remission for nearly three months until days before our wedding last June. This time it was my Father in the hospital. Worrying about him and thinking he might not make it to our wedding shook me up. Stress can certainly exacerbate IBD symptoms. But who knows, maybe I looked up instead of down or turned left instead of right. So, for now, it continues to be a juggle between dealing with this chronic disease, more hospital visits, hoping to find a therapy that works and getting on with all that is Life.

Thrilled to say that the wedding went off without a hitch – Well, Doug and I did get hitched! The day was beautiful and everyone was healthy and celebrating.