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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.

Stress and Anxiety

We all know, I think, by now that stress can have a negative impact on our health. The problem though can be not being fully aware of how much silent stress we carry in our lives.

In my efforts to figure out, “How Did End Up Here?” so that I can eventually find my way back to health, I have to look at another piece of the puzzle– stress.

We all know, I think, by now that stress can have a negative impact on our health. The quick rush of adrenaline that stress provides isn’t all bad – it helps us meet deadlines at work, prepare for exams at school or quickly avoid an accident while driving. The problem though can be not being fully aware of how much silent stress we carry in our lives. The chronic stress of the every day that we don’t consider.

In my case, being anxious and stressed was a regular state of being. It was my normal, how my motor ran, a regular state of affairs for most of my life. Well, I’ve learned you can’t run a car at top speed in first gear and expect it not to blow up at some point.

Without going into too much detail, I survived a difficult marriage, divorce, raised three teenage daughters alone, aided in the care of aging parents, switched careers in mid-life. (Choosing stress-filled real estate as that career – what was I thinking?!) You know, the stuff of Life!

Add to this having an anxious personality and an attitude, positive though it may seem, that I can get through this. I didn’t want to burden friends and family by asking for help. Asking for help was difficult.

There were many upsets, painful moments, and tears but I rationalized and minimized what I was going through for many years, looking on the bright side of things. It was my way of coping. The burden of responsibility was often overwhelming, but what can you do but hang in there? I didn’t want to let anyone down. One of my favourite quotes at the time was ‘When you reach the end of your rope, tie a knot in it and hang on.’ By Franklin D. Roosevelt.

When I first came across that quote, I began to laugh hysterically. That reaction should have given me some insight into my emotional state of affairs. Nope, I counted my blessings, was thankful I could laugh at the way things were (that was another one of my favourite sayings, ‘If all else fails, laugh!’) and continued in usual fashion.

Though I was well aware that stress affects our well being, the degree to which this chronic and ‘normalized’ stressful way of life can have on your health did not hit home for me until reading “When the Body Says No: The Cost of Hidden Stress” by Gabor Mate, a book my youngest daughter gifted me earlier this year.

There is so much information on the mind-body connection here. It led me to learn a thing or two about myself and how certain attributes of my personality and ways of coping (or not) have likely contributed to my current state of health.

“A major contributor to the genesis of many diseases-… is an overload of stress induced by unconscious beliefs.”
Gabor Mate

You likely have heard of the Type A and Type B personality. Apparently, there is also a Type C, which I knew nothing about until now.

Let me fill you in on who these personalities are. They are cooperative and patient to a fault, passive, not too assertive and overly accepting. Unlike Type B personalities that are easygoing but comfortable with expressing emotions, Type C people have difficulty expressing negative emotions, especially anger, avoid disagreements, and make every effort to upkeep a strong and happy façade. They are often overly responsible perfectionists and feel they need to be strong and independent. Guilty as charged.

As you might guess, these Type C’s are more prone to chronic disease and illness.

Then there is that ‘being positive’ thing. Mostly good and I don’t intend to change my sunny outlook on life. I must admit though the comfort I felt upon reading the title of the eighteenth chapter in the book – ‘The Power of Negative Thinking’. It was as if a massive weight was lifted – relief. You mean I don’t need to be persistently positive? Joy!!!

“In order to heal, it is essential to gather the strength to think negatively. Negative thinking is not a doleful, pessimistic view that masquerades as ‘realism.’ Rather, it is a willingness to consider what is not working. What is not in balance? What have I ignored? What is my body saying no to? Without these questions, the stresses responsible for our lack of balance will remain hidden.

Even more fundamentally, not posing those questions is itself a source of stress. First, ‘positive thinking’ is based on an unconscious belief that we are not strong enough to handle reality…”
Gabor Mate

Looking back, I feel if I didn’t keep thinking positively, it just all might fall apart. That’s a lot of pressure – and stress, – which led to things falling apart anyway.

And now, even though at times I feel like I am closing the stable door after the horse has bolted, I am striving to master new ways in handling all that life sends my way. Understanding the impact of subconscious stress on our well being has made me more mindful of how I react to and deal with it.

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Corticosteriods: They Giveth and They Taketh Away

I have a love/hate relationship with this medication. Like so many things in life, Prednisone has its good aspects and then there’s the not so good. I have had to learn to live with them both since, at this point, I cannot tolerate other medications known to be effective with my particular type of inflammatory bowel disease, or the medications simply don’t work.

Let’s begin with the giving part of it and my favourite. It’s keeping me alive! That’s a big one.

I held off trying Prednisone for a number of years after my lymphocytic colitis diagnosis, being concerned about all the side effects. Instead, I began making changes to my diet, hoping to heal with food. Results with this were minimal but more on that another time. Loperamide was my go-to for getting my gut to behave (relatively speaking) during these years. It was not until diarrhea suddenly became acute; uncontrollable and lasted for weeks landing me in the hospital that I agreed to the Prednisone.

Once I started, I wondered why I had held off for so long. The first days, even weeks, were very giving and wonderful. I felt downright euphoric at times and was given a surge in focus and energy like I never have before. Oh, what I felt I could accomplish in those days! The energy boost is great especially on the tail end of being drained from weeks of literally being drained but it can make you at times, manic.

On the flip side or ‘taketh away’ of all this energy is not being able to sleep. Insomnia is a chronic problem for me even now after my body has adjusted to the drug. The first few days are always the worst. I sometimes slept as little as 15 mins in a night and couldn’t nap during the day either. You are left feeling wired and tired.

The sleep disruption I’m sure adds to another ‘giving’ nature of corticosteroids; mood swings. So much fun, not only for yourself but those around you. Some people can also become quite aggressive. I’m generally easy going but I have noticed I’m a little less patient in traffic. Ok, ok, there was that one time where my hand stayed on the horn a little longer than it should have. Oops, sorry.

Corticosteroids can give in so many other ways too. There are the puffy hands, feet and the ever wonderful, puffy ‘moonface’. You can also be given a puffy stomach that has entirely nothing to do with weight gain and one heckuva a voracious appetite, which has everything to do with weight gain. Oh my, the appetite! It is endless at times it seems, and the foods you crave tend to be on the sweet side. Not a good combination.

It can also give you thinner skin and even cataracts too! I’m already up against both of those given my middle age. This is not helping the situation.

Taking away, Prednisone depletes your calcium and your potassium that leads to osteoporosis. My bone density has decreased and I am one inch shorter than I was before all this began. Not to give steroids all the glory, since bone loss is also a result of the malabsorption caused by collagenous sprue or any other malabsorption disorder.

The strength in your muscles decreases as well. With long term daily use your muscles can waste away. Basically, with the puffy face, feet, hands, tummy and diminished muscles, I will look like the stick figures I used to draw as a child. Wait… I still draw like that!

There was something else it takes away, just can’t quite place it… Ah yes, memory loss.

That’s about it, I guess with regards to the giving and taking nature of corticosteroids for me personally. Although I am sure there is more than I am aware of.

The effects of inflammatory bowel disease have taken quite a toll on my body and I am very much aware of how the drug that is currently helping me stay alive is taking its own toll. It is a stopgap measure and only one aspect of a holistic approach I am taking towards improving my digestive health.

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.