First post, of a long road ahead

[RJolly87]

Greetings all.

I start off apologizing in advance for the long winded nature of the post, but the last 2 months have been quite the journey. 

 

A bit about myself:

As of February 28th, I was a 6' 490lb 29 year old single male fatkid. You name it, I loved to eat it. Pizza, burgers, anything, at least for the most part. Fast food was a daily occurrence.  I have always been a kid at heart, and very level headed. Over the last couple of years however, I had been noticing something was wrong, and I could never put my finger on it. Chronic fatigue and brain fog were an almost daily occurrence. I was struggling on a daily basis to perform even the most mundane of tasks at my sedentary office job, fighting with all of my might to push forward, not knowing what was fighting me or what was dragging me down. Depression and anxiety had also become major factors as well, so much so that my will to live was waning, and I felt I was only one major setback away from ending it all. My only hope was the hope it would get better, that something would come about, something that would help me find life again. The whole time my coworkers were screaming at me to get medical help, they had been for years (I haven't been to a doctor in about 10 years) 

Soon after February 28th (it was the date of a social media post documenting 490lbs, and that I was uneasy about it being that close to 500lbs), I was slammed very hard with the fatigue and anxiety. Work was piled up 3 weeks deep, very easy work that had no reason to pile up like that, work that can easily be maintained in a 4 hour workday (I worked 8hrs/day, 40hrs/week). I set my nose down to the internet, and learned a few things. First, you start searching your symptoms, and you will find that just about everyone will find they share a symptom with just about every major disease and condition there is. Thankfully I am not a hypochondriac, and am pretty level headed about these things, so I take the internet with a grain of salt. 

One thing stuck out however, with enough evidence that I couldn't simply pass over it, fibromyalgia. 

The symptom list (with remarks):

Pain areas: in the muscles, abdomen, back, or neck (Well, now that I poke at them, they do hurt, and they shouldn't)

Pain types: can be chronic, diffuse, sharp, or severe (Chronic to slightly diffused)

Pain circumstances: can occur at night (mainly when I am tired)

Gastrointestinal: constipation, nausea, or passing excessive amounts of gas (happening a lot more lately)

Whole body: fatigue, feeling tired, or malaise (Bingo!)

Muscular: muscle tenderness, delayed onset muscle soreness, or muscle spasms (Tenderness and soreness, but no real spams)

Sensory: pins and needles, sensitivity to cold, or sensitivity to pain (I have been less tolerant of cold lately, thought I was just getting old, and a lot of men are big babies when it comes to pain, myself included, but there has been a lot of it lately)

Mood: anxiety, mood swings, or nervousness (All the above)

Cognitive: forgetfulness or lack of concentration (Bingo was his name-o!)

Hand: sensation of coldness or tingling (meh)

Also common: acute episodes, depression, difficulty falling asleep, headache, irritability, joint stiffness, painful menstruation, or tingling feet (about the only bullet I dodged was painful menstruation, thank goodness)

Consult a doctor for medical advice (Ugh, okay)

 

 

Even down to a list of foods to avoid:

 

1. NutraSweet, Equal (I already avoided these because they made me feel bad)

2. MSG (Fair enough, I am sure we could all use less of this in our lives)

3. Sugar, fructose and simple carbohydrates (High Fructose Corn Syrup makes me feel even worse than artificial stuff, and I am the only one of 4 immediate family members that hasn't been diagnosed diabetic. I guess I can give it a break for a bit to see what's what)

4. Caffeine (Already got that sorted out because it wasn't actually helping with anything, and I didn't seem to get anything out of it, except more fatigue afterwards)

5. Gluten (2 immediate family members have known gluten sensitivities, and while I knew this would be the hardest to give up, I was willing to try anything at this point, plus I had already recognized disagreements with me and breads, pizza, donuts, etc)

6. Dairy (I had already recognized I was lactose intolerant, really badly. Like, a bout of ice cream, or even poorly chosen soft cheeses would affect my entire body for 3 days. No love lost here)

7. Soy (Eh, okay, who was I to argue at this point)

8. Nightshade veggies (I already didn't get along with many of the foods in this category, whether it be preference, or actual food allergy, but I do like me some potatoes, but for the sake of science, fine)

 

In my research, it also stuck in my mind that Fibromyalgia is usually caused by something, and tends to be a catch all diagnosis, for lack of a better term. There is no real treatment beyond lifestyle changes, and pain management. Knowing that I hadn't seen seen a doctor in 10 years, and also knowing that I have had chronic throat discomfort, consistent with thyroid pain, and having 1 direct family member with known hypothyroidism, I decided to break my 10 year streak of not seeing a doctor. I scheduled, and switched to a whole food diet, avoiding the 'avoid' list for fibromyalgia, which was probably my first mistake (second, if you count the Googlez). I was immediately prescribed Lisinopril on account of my 150/110 blood pressure (it was chronically high, and I already knew it), and bloodwork was ordered. The doctor (RN actually) I saw was abrupt and dismissive, and didn't want to hear anything of the word 'fibromyalgia' that I discovered on the internet. I was frustrated at that point, and knew the answer I would need would be in the bloodwork, because I wasn't interested in trying medication that 'could possibly' help with the pain I was having, that wasn't really the main issue. 

 

Time went on, I eventually started the BP meds, which had no effect on blood pressure. 150/100 was status quo.

 

Then something happened about a week after the diet change that completely turned my world upside down. I 'woke up' for lack of a better term. Like, for years, someone else had been at the controls of my brain. I liken it to the 'fastforward' or 'autopilot' feeling from the Adam Sandler movie 'Click", only I could remember everything that had happened. For once, in my miserable existence, I felt great, I was grateful to be alive. It was life changing, the moment I had been hoping to find in my misery. In this euphoria, I was able to knock out about 80% of the 3 weeks of piled up work in 26 work hours (across 2 days). It was incredible. I then took some time off of work, and got the blood work done. The next day I started up a different brand of vitamins (another mistake in retrospect), and felt pretty poorly the entire time I was off of work. My internet journeys also brought up a recurring phrase, which caught my attention, something I was having trouble ignoring, 'Celiac Disease'...

 

About a week later the lab work came back, which also included a lupus bloodpanel at the request of the doctor. Most everything came back perfect. 5.4 A1C (made my family jealous), some liver oddities (I think they spotted fatty liver 10 years ago), high cholesterol (no surprise), T3 and T4 Thyroid levels within range, but a 7.x TSH level. The doctor started on Synthroid at that point (25mcg), and upped BP meds.

 

I have always suspected that the fibromyalgia symptoms were a side effect of something else, and sure enough, fibromyalgia is a possible side effect of Celiac Disease. I believe the radical diet change flushed out an aversion to Gluten. I started noticing that if I started feeling poorly, I could track it down pretty quickly. Sausage was one trigger, sure enough, I discover a lot of mass produced stuff uses wheat as a filler. The vitamins I referenced have gluten ingredients. Most of the stuff that messed with me the most pointed to Gluten. I would eliminate it, and then feel perfect again in about 2-3 days. The bloodpressure also seemed to follow this pattern too. It jumps 30 points when I suspect I have been affected by gluten. It has come down some, but the 30 point swing is still there, to the point that I have concern about it possibly swinging too low when I am gluten free. Unfortunately that's only a concern for a couple of days, because I soon discover something else that affects me, and spikes it once again. It seems like the further along I get, the more sensitive I become. Then sure enough, I google 'celiac disease' and something I have eaten recently, and my answer pops out. The latest one was limabeans. 

 

One isolated incident stands out in my mind however, one that scares me. I tried eating gluten free at Golden Corral. I had been free of symptoms for a couple of days at that point, and I went in and ate, armed with the 'Gluten Free' list. Half way through the salad with oil and vinegar, I already knew I was in trouble, with anxiety and pain, but I kept eating, just to see how it would all go down, keeping to the gluten free list. I describe the outcome in two words: "Got reKt"

 

The anxiety and body pained cleared up within a few hours, but about 24 hours in, I feel like my immune system openly declared war on my bowels, and the rest of me was along for the ride at that point. 36 hours in, the offender was passed with all the telltale symptoms, and the next 48 hours was my body settling back down to normal and recovering. It was agonizing, and cost me a day of work too. After that, my body again progressively advanced back to the euphoric stage, day by day, until I stumbled on something else that knocked me off pace, and left me feeling 'glutened' (for lack of a better term). Thankfully nothing has popped up again that has repeated the severity of this episode. 

 

Every fiber of my being believes that celiac disease is the problem, and I believe it was beginning to claim my thyroid as well. Whether I get diagnosed or not, I am just glad I caught this now, assuming I am right. What is scary though, is the third member of my family, that doesn't have a confirmed gluten sensitivity (my mother), also has hypothyroidism, fibromyalgia pain, migraines, diabetes, arthritis, and restless leg syndrome (among many others), and I am starting to pressure her to get get the doctor to look in to it. My father and sister are also diabetic, and sensitive to gluten (makes them feel eck), but I don't believe they have celiac disease. 

 

While I haven't broached it with my doctor (that I picked because my father and sister like him, but I haven't seen him yet, only the RN), I plan to on my next visit, but I am worried. To get truly diagnosed, according to my research, I need to intentionally consume gluten for 8-12 weeks, because I suspect that I have been off of it enough for long enough to skew any possible results. This scares me most of all, more than the bloodwork, more then the endoscopy. This condition almost cost me my life (there are other factors I didn't get into here), and I would rather remain undiagnosed then subject myself to hell for the next 2 months, giving up everything I have worked so hard to gain (or lose, like 30 lbs worth according to the scales), only to find out that I can't ever have gluten again for the rest of my life. 

 

I look forward to drawing off of everyone's experiences in this journey as I turn a new chapter in my life, and I hope that I may soon be able to share some experiences of my own. 

 

Oh, and that little fat kid I talked about at the beginning? He's still around, inside of me. He still gets excited at the sights and smells (and mention even) of cookies, cakes, pizza, fried chicken, everything. Even today, I took the biggest whiff of a pineapple upsidedown cake. It smelled like heaven on earth. Yet, I had no desire to stick it in my mouth, no desire to eat it. I know that I can make this work. It's just a matter of getting in to the new swing of things (and a good kitchen scrubbing) from the looks of it. I love the foods of old, but I love the 'new me' more, because the new me has a brain that works, a body that's not yet falling apart, and a heart that loves and cares. 

 

Thank you everyone, for all of your help, through all of the yesterdays, todays, and tomorrows. 

[SLLRunner]

Welcome, @RJolly87.