Coming to terms with an undifferentiated diagnosis

Sometimes it can be very hard dealing with pain and sickness knowing that there isn't really a solution. I would imagine that with most people, unusual or new pains cause concern, worry, and a desire to Fix. Schedule an appointment with your doctor, search Dr. Google, ask a friend or relative, or even visit your local instacare or emergency department. Take this medication or that, undergo this testing, drink more water, stress less, exercise more; anything to let you know that if you do this thing, relief or even just reassurance can come.

My disease has not yet developed to the point where it can be distinguished as any one established disease, yet every day I feel as if my body is slowly weakening. New and strange pains arise, old issues resurface, and daily discomforts worsen. Repeat tests are ordered, labs drawn, new doctors, same doctors, all showing that, on paper, I am the same as when first diagnosed: I still do not meet the criteria for any matured and definitive disease.

As one can imagine, this can get frustrating. I often feel as if my pain is somehow invalidated by a vague diagnosis. However, I recently came to a realization that just because what my body is doing cannot be clearly defined or definitively treated does not mean that it isn't a real problem. Undifferentiated leukemia is still cancer, however uncertain or unfocused it may be. I need to start recognizing that my pain is validated, that it's not just myself being paranoid or hypochondriac: I do have a very real disease, and it does cause very real pain. My immune cells are attacking themselves and causing inflammation that can be very unpredictable, even for doctors who see this all the time, and for myself, even with daily monitoring and management of my symptoms. It's not the doctors' faults, and it's certainly not mine for having these complaints. My symptoms are real, my pain is real, and I'm doing the best I can managing it all with my lower quality of life.

Autoimmune diseases are poorly understood and recognized throughout the world. On more difficult days, it is helpful knowing that I am not alone in my fight and that I have not only a team of doctors, friends, coworkers, and family behind me, but a whole community of patients who have felt the same way at some point. I can continue my pain management, and continue to let my doctors know of all my new developments, but I should trust them to do what they feel is best, and trust myself to know my body.

"Undifferentiated connective tissue disease (UCTD) is a systemic autoimmune disease. This means the body’s natural immune system does not behave normally. Instead of serving to fight infections such as bacteria and viruses, the body’s own immune system attacks itself. In UCTD, autoimmunity may cause the immune system to attack specific parts of the body resulting in a variety of problems. The phrase “connective tissue disease” is used to describe the diseases of the immune system that are treated primarily by rheumatologists. These represent systemic autoimmune diseases that often involve the joints, cartilage, muscles, and skin. They can also involve any other organ system such as the eyes, heart, lungs, kidneys, gastrointestinal tract, bone marrow, nervous system, and blood vessels. Examples of connective tissue diseases include lupus, scleroderma, rheumatoid arthritis, Sjögren’s syndrome, myositis, and vasculitis. There are many people who have features of connective tissue disease; however, they do not fulfill the diagnostic criteria established for any one disease. In such circumstances, they are often considered to have “undifferentiated” connective tissue disease. Over time, people with UCTD may evolve into one of the more specific connective tissue diseases, such as lupus, Sjögren’s or scleroderma."  

SIBO!

I have been a very good student of my own health lately. Be prepared for a lot of heavily-researched medical terminology. I had a breath lactulose test on Wednesday to check for Small Intestinal Bacterial Overgrowth, and tested... *drumroll*... positive!

SIBO, as it's otherwise called, is defined as "a bacterial population in the small intestine exceeding 105–106 organisms/mL." For reference, a healthy person's small intestine contains around less than 103 organisms/mL, and most of these are the good bacteria. That's 1000, in non-mathematical terms, little bacterias swimming around in one milliliter of your average person's small intestine, and over 100,000 to 1 million per milliliter for someone who has tested positive for SIBO. (Ducowicz)

Surprisingly enough to remember, Dr. Amy Myers, who wrote The Autoimmune Solution I followed last year, also discusses SIBO in her book, as "disturbances in gut immune function... increases the likelihood of developing SIBO." Something interesting that she notes is that certain types of probiotics taken can actually exacerbate certain SIBO symptoms. I've been taking probiotics religiously for years, believing it would help my lactose intolerance... so this makes sense. I haven't taken any since before my EGD, and thinking back, I would accurately say that my symptoms (abdominally at least) have been slightly less agitated lately. I even ate cheese ravioli at Olive Garden the other day with no following pain! I have also been taking hyoscamine, an intestinal muscle relaxer, before meals I know might cause "stomach anger" (like the cheese ravioli) at the request of my GI doctor, and that seems to be helping as well.

Referring back to the gastritis findings from that EGD, the same source mentions that "bacterial overgrowth may induce an inflammatory response in the intestinal mucosa, further exacerbating the typical symptoms of SIBO." (Ducowicz)  Although the chronic inflammation was found in the gastric region (stomach) and not the intestines, this is one possible explanation for it. I was seen in the ER for an E. coli infection obtained from our cruise last month, where they also found some possible mesenteric adenitis--a fancy term for more inflammation, but this time in the mesentary, the tissue that attaches your GI tract to your abdominal wall. This wasn't very surprising, but it made me think that maybe all this inflammation is just happening everywhere, and wasn't the cause of my overall GI issues after all. The gastritis might have happened because of SIBO, or even vice-versa, as "small intestine dysmotility" (food either passes too slow or too fast or both) can create a great little atmosphere for all of the bad bacteria to grow out of control.

My GI doctor, when first discussing the SIBO test, mentioned that treatment for it is a lot like getting rid of overgrown weeds on your lawn. The best way to make sure it doesn't come back, or at least prolong their regrowth for as long as possible, is to rip out the whole layer of weeds and the grass, replant the grass, and feed it daily with a combination weed killer and grass food. He explained that for SIBO, you follow a similar pattern of treatment: kill all of the bacteria in the intestines (good and bad) with a strong antibiotic treatment, take specific probiotics to encourage the regrowth of the good bacteria, and follow a specific diet to make sure we keep the bad bacteria at bay. This diet is the one Dr. Myers outlines in portions of The Autoimmune Solution. I've started my course of antibiotics and should be moving along with new probiotics soon. 

Overall, what I've gained from all of this is just a general understanding that IBS (what my GI doctor was previously using as a diagnosis of exclusion) and SIBO have very overlapping symptoms. There are many differing studies and scientific opinions on whether one causes the other, or whether they are opposing diagnoses in patients with identical symptoms, with the differential factor being the outcome of the breath test results. I'll want to follow the anti-inflammatory diet as I tried to before (of course, for longer than three days this time), but also follow the SIBO guidelines that are included. My doctor also mentioned having me start the FODMAP diet, which I believe is rather similar in nature. FODMAP, or the Low F.O.D.M.A.P. Diet, simply implies the elimination of foods in the following groups: Fermentable (foods that are fermented in the colon), Oligosaccharides ("few sugar" makeup), Disaccharides ("two sugar molecule" makeup), Monosaccharides ("single sugar" molecules), And Polyols (sugar alcohols). Dr. Myers' book simply has a much more step-by-step (less scientific!) and holistic approach to the diet, but I believe it has the same general structure: get rid of carbs and sugars--the little breeding grounds for bacteria. However, something I will be keeping a very close eye on, and will discuss with my rheumatologist, is that SIBO and Scleroderma actually have a researched connection. My positive Scl-70 factor has been on and off over the last few years, but according to my latest research, it may be the cause of my intestinal issues as I originally suspected.

"Scleroderma (systemic sclerosis) is a chronic connective tissue disease that affects the gastrointestinal tract in more than 80% of patients. Severe small bowel involvement by scleroderma can present as SIBO. The reported prevalence of SIBO in scleroderma was 43% to 56%." (Bures)

My non-GI autoimmune symptoms have been worsening gradually since I last saw my rheumatologist as well; I think I'm finally starting to develop Raynaud's syndrome. It started in a single toe, around April-May, and has now spread to all my toes and occasionally the fingers on my left hand. I've been seeing a lot more spider-veins in my legs as well, and the hand pain is only worsening. Thankfully, my PCP gave me a topical anti-inflammatory that I've been using on my hands and wrists that works better than any cooling cream I've previously tried.

In all, I'm ready to start being serious about the connections between all of my symptoms. I originally thought that my autoimmune symptoms and GI symptoms must have a connection, and now I'm slowly starting to receive results confirming that suspicion.

I really appreciate all the encouragement I've received from friends and coworkers about my health condition. Hopefully all these new discoveries will lead to some positive results!


Sources


Bures, J., Cyrany, J., Kohoutova, D., Förstl, M., Rejchrt, S., Kvetina, J., … Kopacova, M. (2010). Small intestinal bacterial overgrowth syndrome. World Journal of Gastroenterology: WJG, 16(24), 2978–2990. doi.org/10.3748/wjg.v16.i24.2978

Dukowicz, A. C., Lacy, B. E., & Levine, G. M. (2007). Small Intestinal Bacterial Overgrowth: A Comprehensive Review. Gastroenterology & Hepatology, 3(2), 112–122.

www.amymyersmd.com/2018/04/10-signs-small-intestinal-bacterial-overgrowth-sibo/

Gastritis

For those of you who have been following my health journey, you may understand the reasoning behind my excitement when I say that finally, maybe, I have something going on with me. I met with the GI clinic’s PA about 2 weeks ago, a fantastic gentleman who was really helpful, considerate, and understanding. A week ago, at his suggestion, I had an EGD (the prep was so much better from this end), and I called today to see if the results were back. I couldn’t hear the receptionist too well when she gave me the results besides the word “negative”, but she said that the PA wanted me to schedule a follow-up appointment and some additional blood work, so I did.

Fast forward to 15 minutes later, when I checked the mail and—lo and behold—a letter from the clinic with my scoping and biopsy results. I actually read the first sentence of the letter wrong, and thought that once again, everything was negative—force of habit. After reading halfway through, however, I learned that they discovered chronic gastritis in my stomach mucosa (stomach lining).
It took me reading the sentence over a few times before I finally understood that it was not a negative result again. The biopsies showed that I am negative for H. pylori, so thankfully there’s no bacteria swimming around in there. There’s nothing going on in the section of the small intestine that they scoped either, so it’s all just in the gastric region. The letter outlines a couple of more tests that they need to do at my follow-up appointment as well, just to rule out bacterial stuff. It also mentioned that, although it was a long shot, I did not show positive signs of celiac either, so that’s good.

I did a little bit of research, but have decided that I will just wait to talk with Spencer, the PA, about treatment courses and such (probably a smart idea, since I sometimes end up researching a bit too deep and needlessly stress myself out). He mentioned at our appointment that we would likely end up building a new diet for me, to help with symptom control and now, I guess, inflammation as well. Even if this ends up being just part of the overall problem, I’m glad we finally have something to work with.

Stay tuned for more to come.

Bowel prep is the worst thing that has ever existed.

After a recent Emergency Room visit (at the ER I work in, no less) I ended up having my GI tract scoped again. This was preceded by the most horrific bowel prep imaginable. Last time around, it was not so bad—the previous clinic had me just use MiraLax . But this time, the prep consisted of a nasty, bitter, gag-inducing clear liquid that I was instructed to mix with water. If any of you have ever had a colonoscopy or EGD, you may understand. If not... consider yourself lucky. My innocent self did not have the good sense to try mixing the stuff with a flavored drink the first time around, and boy was that just a wretched experience.

As weird as it may sound, I was hoping and praying that maybe something might’ve been found. Immediately after the procedure, the doctor told me that they found random losses of vascularity throughout my bowel (in simple terms, the veins disappeared) and slight nodularies (or bumps) along with some varying redness. They took some biopsies and said they would call with the results.

I finally got ahold of the nurse today, who told me that my results were all negative. She mentioned something about hyperplasia, but she said that unless my condition worsens, I should be fine to continue my current course. Hyperplasia is defined as “the enlargement of an organ or tissue caused by an increase in the reproduction rate of its cells”, so naturally I am a bit anxious and still slightly confused, but all of the doctors I work with highly recommended the doctor who performed my procedure and received the results, so I will try not to worry too much.

So I suppose next on my list of self-health-care is to find a new primary care doctor up here in Ogden, since my previous one is now 60 minutes away. I see a new Rheumatologist at my hospital later this month, so hopefully that will all go smoothly as well. My hands and elbows have been stiff and hurting more than usual as of late, and I’m hoping it is just due to the current cold spell. 

Hopefully another update to come soon. Staying positive!

Please hold...

Well, I kind of feel like my health has been on hold for the last bit. I tried the Autoimmune Solution for 3 days, went and had an EGD and colonoscopy, and was told that there is not even a hint of inflammation in my GI tract. Even gave me pictures to prove it. So let’s just say I gave up on the “Anti-Inflammatory Diet”.
I’ve been continuing to see my new rheumatologist, and that’s been going okay. Just a lot of changing meds around. I did, however, start seeing a new pain doctor, after my rheumatologist told me that for now we’re just going to call this “fibromyalgia” pain for the purposes of diagnoses (we’re also calling my hand pain “arthritis”). The pain doctor took x-rays of my back and found out that I do have mild scoliosis, which may account for a bit of my back pain and recent SI joint locking.
So long story short, it’s been recommended that I see a chiropractor again (hopefully one that won’t make it worse this time) and another physical therapist. But of course, these are not covered very well by my new insurance (turns out you lose TriCare when you get married). So.... I guess I’m just on hold for now!

Tables are turning

I met an absolutely amazing woman yesterday who completely changed the course of my ongoing health journey. She is a older sister missionary who occasionally helps conduct a meeting that I attend, and prior to being called as a missionary she devoted herself to helping people with undiagnosed autoimmune diseases.

When I mentioned that I was currently going through the process of trying to receive a diagnosis for an autoimmune disease, we talked for a good half hour about symptoms and doctors and health plans and books and studies. For the first time ever, I received actual confirmation from a living human being that my plethora of symptoms actually mean something. I have never had someone tell me, medical professional or otherwise, that my abdominal pain and food issues are connected to my other symptoms. For years now, I have tried diets upon diets, meal plans for everything from Crohns to Celiac to IBS to lactose intolerance, and now someone has finally told me that yes, it actually is part of the autoimmune disorder. She gave me the name of Dr. Tracy Frech, a doctor she has seen for years who specializes in Scleroderma at the University of Utah, specifically focusing on diagnosing the "undiagnosable" or beginning-stage patients, with a huge system of clinical trials and treatment plans. Even with her 2-3 month waiting list, I called first thing this morning to get everything squared away to start seeing her as my new rheumetologist.

The sister missionary also told me about a book called "The Autoimmune Solution" by Dr. Amy Myers. She went on and on about how completely this book changed her life and how absolutely essential it had been to her recovery and treatment. You can only imagine the tears of joy that appeared as I wrote down every word she said about how she is now able to exercise for 40 minutes a day without pain, and how certain lesser-known changes in her lifestyle completely changed her quality of life. She said the book contains not only information about the diseases themselves, but details a step-by-step treatment plan based on your symptoms, focusing primarily on diet, supplements, and exercises. I ordered it on Amazon an hour after leaving our meeting, and I plan to follow it to a T. Even if it tells me to eat fish... at this point, having a plan and a timeline are the biggest blessings I have ever received! Dr. Myers not only published the book, but has an entire website - amymyersmd.com - with a whole detailed plan including grocery lists, recipe books, recorded interviews with other professionals, stress management tools, and just so many solutions that I never thought were possible.

This is the most hope I have felt since a year ago when my confounding symptoms began worsening. I've finally met a person who knows and understands and has information about the things I am experiencing. Sister Jenks was quite literally an answer to my desperate prayers.

A road not yet traveled...?

So I did a sleep study two weeks ago... you know the kind where you go to a hospital and sleep in a room with a crapton of monitors on your head and chest and legs and arms while they watch you through a camera all night? Surprisingly, it wasn't actually that bad. Unfortunately, I got the results back and nothing was abnormal enough to raise any red flags. So back to square one I guess, my fatigue problems are not apparently due to lack of quality sleep.

Something I have been thinking about bringing up with my doctor apparently is something down a totally different road that we (surprisingly) haven't even really addressed, and that's the possibility of a gluten intolerance. For any of you who have really ever met me, there's a very high chance that you know that my diet is rather limited. This, however, is not due to allergies as far as I know, and is mostly just a result of trial and error with different foods. For example, I haven't eaten potatoes in years because I know that they upset my stomach. I can only eat about 15 grapes at a time or a 1/4 cup of tomato sauce before my stomach starts getting angry at me. Grains though, I've always thought were never a problem. I mean, I can usually eat breads and pastas with no upset; in fact I practically live off pasta. But after searching all corners of possibilities with the symptoms I'm experiencing, most of them match up with the symptoms of a gluten intolerance. I don't usually get an upset stomach immediately after eating grains the same as I would with tomato sauces or juice or potatoes or corn, but at this point, my stomach basically hurts so often that it's hard to tell what caused it anymore. I'm getting little red dots on my chest and arms, there's the fatigue, joint pain, nausea, migraines, mouth ulcers, weight changes, inconsistent stools, vertigo, bloating... the list goes on.

I'm obviously not an expert on intolerances or sensitivities to food, but I'm just hoping to find some answers. When symptoms start to add up, I start looking at all possibilities. If this goes somewhere, I can't say I'll be relieved (due to my pasta habits), but at least I'll have an inkling of an idea what might be going on inside my body.