First, just want to say, I have not been diagnosed with Celiacs, but I believe there is a possibility (a small chance if anything) I may have it. I am posting here, because honestly I don't have much else to go off of. I'm looking for advice or perhaps input from others on this forum who may have gone through similar symptoms. I know I'm not crazy, I know there is something wrong. It may sound weird but I want it to be Celiacs. If that's the case I can get my life turned around and start feeling better. Anyways here it goes...
Here's a synopsis of me: 24 year old male, healthy my entire life (played sports in all my life, always very vibrant and active) up until around 21-22. Started experiencing severe muscle cramping that began in my calves while exercising (no biggie right?). This progressed over a few months, then I started to get tingling and numbness in my feet/calves, mostly in the evenings. At this point I was little worried so I went to my pcp who sent me to some orthopedic docs, thinking it was shin splints or compartment syndrome. They could never figure it out, and I was going to go through with the compartment syndrome test (they stick a pressure probe into your muscle!) but decided I didn't need to.
Eventually, after a few months of cramping and tingling, I got this weird eye twitch. It would not go away and persisted for several weeks. Then I got full blown muscle twitching everywhere in my body. It would remain dormant while I was active during the day at work but as soon as I got home in the evening it would flare up. At this same time I started having difficulty sleeping. I either couldn't fall asleep for several hours or I would wake up repeatedly during the night. I was prescribed Elavil 20mg to help me sleep, and it does work with few side affects, but I would wake up still feeling exhausted day-after-day.
The muscle twitching over time gave way to severe muscle stiffness. I always felt very tight, achy, and injury prone. I believe this is from the constant muscle activity/twitching. This entire time I would also get intermittent tingling and numbness in my feet. While exercise helped me feel a little better, it would also make me super sore and stiff for the next few days, even for weeks. I was always pulling muscles, straining stuff, I tore my pec just from lifting 80 lbs, so I just stopped exercising. My joints and bones were always in pain too, I felt at many points 40 years older than my age.
The fatigue and psychological issues were, and still are, the worst symptoms I have. There were days while I was working I had to call out just to remain sane. I was that stressed out. I was exhausted and tired and by the end of the day I could barely function. I would get severe bouts of depression and anxiety. I don't want to go into too many details but there were certain points where I was suicidal. I was a mess. I wouldn't hang out with friends because I was so tired. I would have severe mood swings, I was angry, irritable, sad. Little things would set me off. My fiance, God bless her, has stood by me this entire time consoling me and offering advice.
Some other symptoms I've experienced: very sensitive to cold in winter (I was always freezing- which is not normal for me), off-and-on heart palpitations, chest pain, headaches, and severe brain fog. In terms of GI symptoms, while these have never been on the top of my mind as being severe, I realize now my bowel movements are not healthy. I've always had bad gas my entire life (very,very bad-just ask my fiance haha), in the last few years I've had a lot of constipation, unhealthy stools, off-and-on diarrhea. My bowel movements fluctuate a lot! Most days I have several bowel movements, but they're hard to pass. Other times I have very loose stools. Rarely do I go for more than one day with anything like a normal bowel movement. I never paid too much attention to these things, in fact I've never even mentioned it to my doctor. But I"m starting to wonder if the gas I've been experiencing life-long, plus constant constipation/weird bowel movements means something more is going on.
Doctors and specialists I've seen in the last 3 years for all these issues: 3 neurologists (did nerve conduction and EMG- everything came back fine except some compressed nerves in neck and back), 2 Rheumatologists (did full work up checked for all sorts of things including Lymes, Sjogrens, and other auto-immune disorders- all came back normal), 3-4 Ortho docs for my legs and lower back. 2 Endocrinologists (my Testosterone is on the low end at 330 ng/dL due to taking steroids when I was 18- I've had symptoms of low testosterone since that time but those symptoms were very manageable compared to the last few years) all my other hormone levels came back A-okay. Saw a cardiologist for my heart palpitations and chest pain (she did an EKG and it came back fine). I've had MRI, X Rays, tons of bloodwork done over the last few years. I've had two pcp docs, I've seen them what seems like dozens of times and they never do anything besides put in referrals if I beg them or pull routine blood work.
One of the Rheum's told me I had fibromylagia and to basically just suck it up, there weren't any answers to how I was feeling, then sent me back to my pcp like I was someone else's problem to deal with. Another doc told me I had benign fascsiculation syndrome. Besides that I have not gotten any definitive diagnoses.
Now, here's the interesting part. I finally asked my pcp to do a sleep study. He was reluctant but went ahead. I go to the sleep doc and he tells me I don't have anything wrong but he'll go ahead and do the study. It turns out I have severe sleep apnea- very bad on the order of 90 events per hour on the Apnea-Hypopnea Index. This was back in February of 2015. I got my Bipap machine in mid March and have been using it ever since. I get my AHI down to below 1 every night- this is very good! I also started on Testosterone in March 2015 as well to see if my low testosterone was causing some of the problems as well. I've put on over 20 lbs in 4 months, my testosterone level is at a very healthy, youthful level around 900 now. Between the Testosterone and treating the sleep apnea I feel slightly better, my energy levels are little bit better, muscle twitching and stiffness has gone down some but will flare up for no reason. I still get some of the nerve sensations and my depression/anxiety still seems to stick around.
Because I was still feeling tired and exhausted despite being treated, I saw the nurse practitioner at the sleep study center and he pulled some labs. For the first time, my ferritin levels were pulled. They came at 18 ng/mL. My CBC panel came completely normal, hemoglobin, hematocrit, MCV, MCH, all normal. I know this isn't the lowest, as I've seen many others on this forum and others with much lower, but to me this might be a missing piece to the puzzle. Based on the research I've done, you can have all the symptoms of iron deficiency anemia with low ferritin. And I know it's one of the most common symptoms of Celiacs. So, am I crazy for thinking all this? Does my ferritin level warrant a referral to another specialist to be checked for Celiacs? I don't have blood in my stool, I've never had gastric surgery, I don't have hypothyroidism (which I know can cause low ferritin), I've never donated blood, I don't have Crohn's. All my research points to malabsorption issues as the key possible cause of my low iron stores, but I'm not sure :/ I know sleep apnea and low testosterone can cause some of the symptoms I've had, but I've never seen anyone with sleep apnea or low t in all the research I've done complaining of all the neurological symptoms I have.
Anyways sorry about the long post. I just want to start feeling better and maybe hear from others who have gone through something similar before being diagnosed.
Note: I've tried all sorts of things, from yoga to meditation to stretching for an hour a day. I've supplemented in the past with magnesium 500 mg daily, Vit D ( I got my Vit D from 19 to 80 by taking 20,000 IUs daily for 3 months but had no affect on any of my symptoms), liquid B12 1,000 mcg, COQ10. The only thing I think helps is the magnesium- when I take it I notice a calming affect on my anxiety but that's about it.